unexpected photography project

An Unexpected Photography Project!

Mandy Photography Projects 1048 Comments

My Glomus Jugulare Tumour

I had a very interesting start to 2009. On 7th January I went into hospital to have a Glomus Jugulare Tumour removed from behind my right ear. Obviously when you hear something like that about yourself then it’s a worrying time. And I have to admit that I was really nervous about having the operation. But it would have become life threatening so I had no choice. Never one to waste an opportunity though, I thought I would share my experiences. And of course being a photographer I thought I would document it with a couple of self portraits, so to speak. It is definitely my most unexpected photography project. I took them once I came out of hospital and I’ve added some of them below. They show my scar nicely (which I’m quite proud of).

Angiogram and Embolisation

So first I had to have an angiogram and embolisation to cut off the blood supply to my tumour. Which has got to be the single weirdest thing I have ever had done to me. Briefly, while under x-ray they sent a small tube (in my hip) around my body it seemed. Eventually ending up at my ear where they fired (yes fired) tiny balls at the tumour blocking the blood vessels that were supplying it. I could see myself as an x-ray on 6 screens – very surreal. Anyway the images were put on disc for the surgeon for the next day…

The Operation

scarI’m convinced to help settle my nerves the nurses gave me surgical stockings to put on. Which have got to be the single most annoying, how do these help anyway, impossible things to put on. By the time I got them on I was shattered.

This photograph on the right was taken just before the stitches started coming out. My husband took this one – quickly because I couldn’t keep my arm up for long. I do quite a good Frankenstein impression, don’t you think?

It was funny how my mind and body reacted to the general anaesthetic, the operation took 9 hours from 9am to 6pm (yep you read that right – 9). Which the surgeon was pretty excited about telling me as I woke up, along with how well it had gone. I was a little surprised by how long it had taken, I’d been told about 4 hours. But for some reason the only thing that concerned me at the time, was whether the surgeons had had any lunch! They thought this a strange question too, apparently not a lot of people ask that. Now as I said at the time, if somebody’s messing around in my head with a scalpel then I want to make sure they’re paying attention. And not thinking about lunch…that seemed to amuse them.

arm after operationTop Tip –

Beware of long hair when having surgery around the head area. Bad mistake, cut it off, go short for a while or at least don’t have it really long. My hair ended up in a horrible matted mess (blood from op) that stayed up on it’s own and nobody wanted to touch because of the post operative swelling!

I didn’t make it easy for myself with this photograph. It was taken about a week after the operation because it had been too painful to hold my camera before then. Yes you could say a tripod might have been in order. But thinking clearly was not my forte at the time! Oh and this was better you should have seen my arm the week before, all of it was purple.

And then the recovery starts…

Is ignorance bliss? I think knowledge is a two-edged sword, too much of it can be a bad thing but not enough can also have it’s problems. I had no concept of how bad the operation was going to be, and how long it would take to feel anywhere near right again. The 9 hour operation definitely took it’s toll on my body. It was a steep learning curve with everything from post operative swelling in my neck, to taking 6 days to get all 35 stitches out. It has been an experience that I wont soon forget.

scar healing nicelyI am not the worlds most patient person so I’ve found my recovery hard, not least because it’s been painful to hold my camera to take shots of anything, let alone my head. I never realised how much I use my neck muscles for simple tasks. And although I’m still in some pain with my neck and ear (it’s still perforated, the ear drum that is). I’m improving all the time and slowing getting back to normal, phew! This is a more recent shot and you can see that my scar is healing nicely and my hair is growing back really quickly. Now all the stitches are out and the scabs have come off I might be able to get my hair cut!

I did put my life in the hands of the surgeons and medical staff and that was scary. But I do thank all of the team that looked after me and for everything that they did for me.

Mandy

Comments 1,048

  1. wow, first of all, congratulation for getting through all that. that must not been so easy on you and your family, but you made it!

    you even transform this turmoil into a photography project! haha. so how are u feeling now?

    are u able to walk out and take photos?

  2. I’m feeling a lot better now thanks Victor, and yes I have started to get out and take photos, last Saturday in fact!

    I’ll be uploading them soon to Flickr…

    1. hi Mandy I can share the same kind of story in 1994-95 I have hoarse voice, swallowing issues, and lost my voice– after 6 months seeing an ENT a firend referred me to a wonder ENT who diagnosed my glomus vagaale tumor and did numerous tests and attempted to shut of blood supply to tumor with small pieces of plastic injected into my blood stream. they then did surgery a few days later to remove the tumor– I had damage to cranial nerves 10-12 from the tumor. Ihave paralyzed right vocal cord, hearing loss in right ear, and major swallowing and aspiration issues. I recently had a cat scan to find the tumor is back. I am in Missouri and am looking for a head and neck surgeon to help me with this. I also am needing to have some work on my vocal cords so I can eat better and put off getting a feeding tube as long as I can. is anyone on here in the united states? would love to talk to others with same tumor

      1. Paul,
        Sorry to hear news about the recurrence. I’m 11 months post surgery for glomus jugulare tumor, and have experienced all the same things you listed, but on the left side.

        I’d be glad to share information with you (privately if possible). For now I can tell you that I’m enjoying a remarkable recovery, although it’s seemed like a tough journey and at times seemed hopeless. I can now swallow without risk of aspiration, voice has improved dramatically in quality, although endurance is still an issue, left-side hearing remains at 15-20 percent, but is helped somewhat with a single hearing aid. I’ve had a lot of work done on the left paralyzed vocal cord and throat tissues, along with lots of voice/swallowing therapy. Basically I’m not the same as I used to be, but life has returned to being good — I have a “new normal” and it isn’t bad.

        I’m just north of you — Iowa. I feel very lucky to have been sent to the University of Iowa Hospitals and Clinics in Iowa City, Iowa. The otolyrangology department there is phenomenal. My surgeons and doctors were beyond awesome: Drs. Hansen, Hoffman and Kacmarynski.

        I’m new to forums so I don’t know how to contact you or others, but if we can figure out how to do that I’m very glad to share my experiences. My email is kamrakid@gmail.com .

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  4. Hi Mandy, this is a genuine enquiry, I found you searching about your type of tumour, bizarrely enough! So sorry, this has nothing to do with photography! I have a similar tumour and am probably facing an operation early 2010 and because it is rare (as you know!), I am trying to get in touch with anyone who has suffered and survived the whole experience, like yourself. If you would consider being in touch with me please let me know.
    Many thanks, Ali.

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      Author
      1. Hi Mandy. i found out about my tumor 2 days ago. to be frank, your post scares the living hell out of me. was the recovery painful? its been 5 years for you now, what symptoms do you still have after the surgery? i am a medical rep, and as a result i need my voice and face to work, otherwise this surgery will have a much larger impact than i ever anticipated. could you please give me any pointers or anything to help me prepare mentally and physically for this!

        thank you very very much!

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          Author

          Hi Francois, Sorry I didn’t mean to scare you. For me the recovery was about a year but everyone is different. And that was mostly physical and fatigue. I’m very lucky that my face and voice are fine, I get a lot of ear infections though and have no ear drum (that can’t be fixed) but I’ve learnt to live with it, and around it!

          The one thing I vastly underestimated was the recovery, I felt like I had been hit by a bus. I wish I had just given in to my body and slept for 2 months, because trying to carry on made my recovery longer… listen to your body and do what it wants you to do! Hope that helps

  5. Wow! I wish someone had this information on the web in Jan. 2008. That is when I had my glomus jugulare surgery. Your experience sounds exactly like mine! I hope you are doing well. I just went for my 2 year follow up last week. The MRI shows that some of my tumor is still there but is small and not growing at the time.
    Dawn

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    Author

    Hi Dawn,

    Glad to hear your tumour is under control! I’ve just had my one year MRI scan and I’m waiting for the results, then they’ll decide when to patch my ear drum up – it’s still perforated…

    …otherwise I’m doing well, thanks

  7. hi you all, i have had the same operation done except my cut was not as long and i recovered pretty quick 6 days after surgery i was home,took it easy for a few wekks like they suggested but i had plenty of energy..and now i’m on my 4th week and spring cleaning,,i feel like a new women…p.s…my tumor was secreting a chemical like adrenalyn so it affected my b,p. heart rate..so now it’s all gone,,i feel like a million bucks..if you wish to know more .you may email me i would love to share my story!!

    1. 12/13/2015
      Hi Paul,
      I also live in Missouri and just recently was diagnosed with a glomus jugulare tumor.

      About 18 months ago I started going to doctors telling them I had a heart beat in my ear.
      I was told I had allergies and given ear drops and clareden-d which did not help.

      Finally after being persistent I saw Dr. Goeble at Barnes did the scans and as he suspected it was a glomus jugulare tumor inside the top of my jugulare vien.

      I am seeing Dr Richard Chole at Barnes Jewish Hospital. However, at this time I do not have a
      treatment plan, but he does not seem to want to do surgery due to my age. I am 64 years
      young, feel great exercise a lot and take no medications. The first time I saw him he recommended the gamma knife or radiation of some kind. At this appointment they could not get the scans up on the computer. So I have to go back and see him again for my treatment plan.

      Maybe he can help you too.
      God bless you, hope all is well.

      Rose

    2. I sandy,

      my name is Alice. i diagnose with this tumour since 2012 but i was put under monitoring. now they have decided to have it done but my main scary aspect of it is the post operation. im age 51. im not sure if age anything to do with the recovery. please share some light if you dont mind.

      1. Hi, Alice, every statement of your story is same as mine and we are of the same age. I was diagnosed in 2012 and under monitoring since then, hopefully, I am going for surgery in September or earlier according to the medical team. I live in the UK. Panic attack is killing me presently and I’m very emotional every now and then

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    @Sandy, I’d love to hear your story!

    @Sereneity, the best thing is that they’ve found your tumour and can now do something about it. That’s the first major hurdle, it took 3 years for mine to be diagnosed. Now it’s a case of trusting your medical team and finding the answers and reassurance that you need to feel better about it. If you have any questions feel free to contact me?

  9. I have lots of questions, I’m just not even sure where to start. My ENT kinda threw me for a loop when I saw him last week. I initially went in because I knew i had a growth on my left ear drum. It’s been pretty painful, like a migraine in my ear. I’ve had it for nearly 9 years. My husband used to work making hearing aids and doing hearing tests. He saw it when it first started. I went to a regular dr and he couldn’t see it. So I just kind of ignored the pain, then we didn’t have insurance while my hubby finished school. I had finally decided to go to the dr again a few months ago and skip a regular dr since my insurance doesn’t require a referral for a specialist. So the ENT saw the growth and said he thought it was a bony growth and ordered a cat scan to see how far back in the ear it went. His nurse called to tell me about the tumor. I thought the growth was the tumor, it’s not. WHen they did the cat scan for the growth in my left ear they found the tumor in my right ear. So I now have two separate issues. I have a MRI and MRA this week, to positively identify it as a glomus jugulare tumor. He said there is a tiny chance it’s just a high jugular bulb, but he doesn’t think so. I did do some checking and found the neurosurgeons the nurses would use for their families, so that’s who I will use. I’m just so nervous. I’ve never had surgery before. And super stressed, since my seven year old needs surgery, too. I wanted to get his done before mine, but I’m not so sure that’s going to be possible and I really wanted to be at 100% to take care of him. Sorry, I didn’t mean for this to be so long.

  10. hi mandy 3 weeks i was told i have a glomus jugulare tumor.waiting on a appointment to go to addenbrookes hospital.im very frighten ive read your story saying that all went ok and that you were only in there for 6 days made me feel alot better.ive put your story on my favorites ive read it a few times to try and make me feel better about it.

  11. I had an 11 hour operation to remove glomus jugulare tumour on 1st September 2009 at St Vincents Hospital Sydney. The operation gave a great outcome despite permanent LHS deafness and I have made a full recovery. I am happy to talk to anyone of my experience in any level of detail.

  12. Tenho tumor glomico na jugular e estou esperando o médico montar uma equipe para me operar. Estou com muito medo! Descobri o ano passado e só agora consegui “conhecer” alguém que já fez essa cirurgia. Tenho algumas dúvidas e curiosidades, você poderia me ajudar? Gostaria de saber quanto tempo demorou a recuperação, se você sentiu dor. No seu relato você fala sobre a musculatura do pescoço, o que aconteceu? O médico falou de sequelas , você ficou com alguma? Vou esperar… Obrigada Edirene

  13. Hello! I was thrilled to find others out there who have been through this! Well, you know what I mean. I was also diagnosed july of 2009. My G.J. tumor had gotton so large I had lost my hearing, and voice. I had been going to Drs. for years, insisting there was something in my head and basically was told I was nuts. Unfortunately, by the time a ENT finally found it, it had grown and taken over my brain stem, my ear drum, trachea and vocal cord. It was a 3 hour embolism surgery followed the next day by a 18 hour, yes 18, surgery they took my ear drum and bone from the side of my head and then took fat from my stomach and stuffed my head with it. Do others go through this? That was the best part, a free liposuction! It’s a bit caved in behind my ear, but my hair is long enough to hide it now,followed by 3 weeks in the hospital. Blood clots and stuff. I knew mine had to of been pretty bad because other people on my floor were going home within 4-5 days. It has been a year and I still struggle with swallowing, breathing, coughing, voice loss, not to mention the hearing loss and nerve damage to my left, arm, neck and shoulder. But you know I can almost handle the physical stuff, it’s the whole having to reinvent myself thing. I mean what do I do now? I can’t go back to my work, which was in theater and voice work. And who wants to hire a chick that sounds like a horse Elmer Fudd? I can’t lie, it was hell, it hurt, and there were days I wanted to give up, BUT I ‘m alive and doing quite well considering. You really do find out who’s there for you and who’s not when going through something like this and believe it or not so many blessings are layed in front of you too, or maybe you just start seeing them.? Thanks for letting me sound off. Hopefully I’ll figure out this new me soon!

  14. hi got my appointment for 27th august this friday at addenbrookes to tell me what they are going to do.got a tumour high up in my head, like yours ,

  15. Mandy
    My wife just had this operation done on Sept. 25, 2010. Did you have any parilization in your face while recovering. My wife’s right eye will n0t close all the way and she can not smile on the righht side. The Dr. said this is do to the swelling and that it should return to normal after the swelling goes down.

  16. Hi Mandy, i have just been diagnosed with a glomus jugulare tumour, doctors are telling me its best to leave it there and not operate due to risks of loosing my hearing, paralysis of the face, my sense of swollawing and a difference in the sound of my voice. Im enquiring wether yours was in the same position as mine and if you were warned of these risks happening to you too. Do you hav any side effects after your surgery or did any of these things happen to you?

    regards Stephanie

  17. An update! I just realized I never came back and updated! I did not have a tumor! When the dr first told me he thought I did, he said there were two possibilities, one very unlikely. I have the unlikely one. The end of my jugular vein, jugular bulb, ends in my ear, not in my neck. All that worry for nothing! Thanks for being there when I needed it!

  18. Hi Mandy I know this is about a year from your surgery
    date, but I found this site looking for people with the same tumor
    like me. This site has been so helpful. I have read every comment
    on here and some of these stories sound so mirrored to mine. I was
    diagnosed with a glomus jugular tumor in may after being told
    several times that I just had a real bad ear ache I went through
    about a year 1/2 of symptoms, hearing loss, trouble swallowing and
    vocal loss then finally when I was diagnosed the surgery was
    shortly scheduled. I had surgery Nov 2 2010 and went home about two
    weeks later my third day at home I started to leak csf fluid out my
    ear and was readmitted back to the hospital for a week with a
    lumbar drain once I was released I went home for another week and
    went to the doctor the following monday right before I was about to
    walk out the office csf fluid started to leak again from my ear, So
    immediately the surgeon wanted to schedule to go back in where the
    initial cut was and patch up the leak, this was done Dec 6. It has
    now been a month since my last surgery and my recovery process is
    slow. Everything feels really weird on my left side I have pain
    here and there like sharp pains my ear canal was closed and my
    balance is off when I walk. I just need encouragement that things
    will get back to normal I washed my hair for the first time last
    friday and I was so scared it felt so weird. My biggest concern is
    when did most of you start to feel normal again because I feel so
    left behind and I want to feel a piece of me again. I would love to
    hear anyones recovery story. Thanks again Mandy for sharing you
    experience with us.

  19. I am glad to have found your story. I found that I had a
    glomus jungular tumor in my right ear in March of 2009, ripped my
    life apart. I had thought that being sent to the specialist for
    reocurring ear infection and a continual pulsing noice in my ear
    would not end up with the answer that I got that day. The doctor
    had told me the paralization of my tongue, and the nosie should
    have been a clear sign that something was wrong. I had been told
    ten years earlier that my ear was really red inside, but it wasn’t
    infected so nothing needed to be done. The specialist tried to get
    me into a specialist in Calgary, and Victoria. The specialist in
    Victoria would not touch me because he said the surgery was too
    dangerous. So after a few months of fighting with doctors, I
    insisted on them doing something. I was then sent to Winnipeg for
    gamma knife surgery(high concentrated dose of radiation). It was
    not to shrink the tumour, but to kill the tumour and cut off the
    blood supply to the tumour. I year and half later my symptoms are
    back and they got me into a specialist in Calgary in a couple days
    notice. The tumour has found a new source of blood supply and is
    becoming active again. I was told the constant pain in my shoulder,
    pain in my head after sneezing, coughing and bending over are all
    side effects of this tumour pushing on nerves in my head and
    putting pressure on my brain.Surgery is my course of treatment in
    the next few months. Alot of hurdles to cross first, must have a
    full body scan done to make sure that there are no more tumours
    anywhere else in the body. This is not available in our province so
    must go elsewhere for that, also have to have an extensive set of
    blood work done, to check for chemicals that might me given off by
    this tumour. Doctor also suggested donating my own blood for
    surgery, because of the blood lost during this procedure. Here it
    is three weeks since I was out to see the specialist in Calgary and
    still no word of any arrangements. Good old medical system. If
    giving advice for someone with a medical situation, gather up and
    keep all of your own mri’s and ct scans, and all of your own
    medical reports, because no body helps you or looks out for you,
    there is no communication back and forth between doctors, you must
    do everything yourself, and look out for yourself. I am terrified
    of what is to come in the next few months.

  20. Post
    Author

    @ Jennifer – that’s some journey so far, and I hope it continues to challenge you and teach you new things, in a good way!

    @ Wayne & Lisa – I didn’t have any problems with my face, but I had no feeling on my head behind my ear which has come back with time. Once the swellings went down the pressure on my nerves also went.

    @ Stephanie – my tumouer was on my jugulare bulb behind my right ear. I have very little hearing in my right ear at the moment due to my ear drum being damamged and I have occasional trouble with swallowing. I was warned about all of this before the operation and more! And I’d do it all again because my understanding is that Glomus Tumours just keep on growing, so leaving it would have caused much worse problems than those mentioned. You can see from what other people have said that side effects are real, but at the end of the day we’re alive and can live with them…hope that helps?

    @ Arlesia – Thanks for sharing your story. I know what you mean about not feeling yourself. A friend used to always say to me “you’ve not just had toothache you know!”. Sounds obvious but I wanted to feel normal again as soon as possible, at the end of the day it took me a good year to feel like that. You’ve been through a lot and the best advice I can give you is don’t try and rush it, take your time and more importantly give your body time to recover, and you will get there. ‘Time is a great healer’ and that’s sooo true!

    @ Debbie – That is so true, you know yourself better than anyone else, I had to fight to be referred I was told I was just tired from having a baby but she was 3 when I was diagnosed (to give the Drs their due it’s very hard to diagnose a Glomus Tumour). Imagine if I had given up? You have to fight your own corner, it’s your life after all!

  21. Dear Mandy and others. I am now 10 months since surgery for my glomus jugulare – 9 hour operation in London, 12 nights in hospital but generally quite good outcome even in the early days. I had no effect on hearing/balance and in fact my voice which had been affected prior to surgery, improved! my swallowing was also slightly better but I had generally ‘accommodated’ the nerve deficit through my tongue. I also had bone removed from behind my ear which looks caved in but my hair hides it. The nerve through my shoulder had been damaged before surgery but luckily I don’t notice any weakness here at all. The only side effect I wasn’t expecting was First Bite Syndrome and I wasn’t consented for this as it was unusual to get this with where my tumour was lying. This side effect was v.unpleasant for a few months – sharp pain at the back LH side of mouth on eating – for first few mouthfuls at any rate – I was on carbamazapine to help with the pain for around 8-9 months but decided to drop the drug as I was feeling it was making me tired and I was coping with the pain quite well – its amazing what you get used to. I had gamma-knife surgery around 6 months after the main surgery and this was because they hadnt managed to get all the tumour out. The gamma-knife (high-dosage radiotherapy) set me back around 3 months – mainly tiredness but in Nov 09 I started to feel my energies improving.
    Currently apart from tiredness – (but I am also43 with a 5 & a 3 year old which keep me out of mischief !), I am doing really well. I came off all painkillers last November and do not get any pain, only mild headaches/neckache but usually when I do too much. Even back to exercise. I have an MRI mid Feb and don’t expect much will show as have been told its early days – in fact will maybe need to wait 1-2 years after surgery before they can tell anything. But have been told generally people fair well after a mix of surgery and gamma-knife.
    Am happy to be in contact with anyone. It was a life-changing experience for me and a really tough one at that, but feel I am lucky that the tumour didn’t cause any more damage than it did and that it was discovered in time.

  22. Finally – It is with great interest that I read the
    postings / comments here – it helps to know that others are
    experiencing similar issues. I was diagnosed a year ago (Jan 2010)
    with a large right skull based glomus jugulare tumour. Early
    symptoms were progressive hearing loss, some vertigo and a listing
    to the left. Finally, a deviated tongue and facial palsy in Dec
    2009 led to a biopsy and diagnosis in Jan. Fortunately I live near
    a city with an excellent level of health care. What sticks in my
    mind are the personal phone calls from the specialists (knew it was
    bad as the doctors were calling me personally) and the words, from
    several key doctors – ‘we are so sorry’. Doctors would not operate
    due to size and vascular nature of the tumour so instead I
    underwent a 5 week course of radiation last March in an attempt to
    stop the growth. Recovery has been slow (slow growing tumour = slow
    recovery). Still trying to get used to the ‘new normal’ and trying
    to rebuild my body and energy. Can’t believe that it’s been a whole
    year plus! I have been off work since the diagnosis and treatment –
    and not sure when the doctors will let me return. Think that things
    are under control for now as some symptoms have lessened but there
    are numerous small changes, most on the right side (reduced eye
    blink / movement, swallow issues, constant feeling in mouth like
    I’ve just had a filling, total right sided hearing loss, headaches
    and pain localized to the tumour site, and slight balance issues).
    There is a constant reminder that there is something foreign in my
    head! Will have my next MRI in June to determine how the tumour has
    reacted to the radiation – by that time swelling from radiation
    should be gone. Get by by taking it one day at a time and focusing
    on the positives, no matter how bad I feel I know that it could be
    worse! But enough of my rambles. All the best to those who are
    dealing with this tumour.

  23. Wow guys! I am glad most of you are on the way to recovery. I wish you all the best. I can’t seemed to get started with this. Here is my horror story: I have “fired” so many doctors due to being misdiagnosed with this. I had a small one 12 years ago that was removed from the left ear and now I have a very large one in the same ear. This current doctor that I am contemplating firing as well first said it was Cholesteatoma even though an older doctor friend of mine said it wasn’t cholesteatoma.

    So I went for surgery for this c-toma and surprise–they found a very large glomus tumor when they opened me up. The tumor hasn’t been removed but yet I have the c-toma scars behind the ear. Plus I had quite the horrible post op experience with the staff who was PO’d with me because I was last case on a Friday night during the Holiday Season and vividly remember one young lady treating me like crap. I also came home with bruising on my body from thumb and index finger to my chest and broken blood vessels in my eyes. I have passed around like a joint at a party. I have been shuffled from neurosurgeon to neurosurgeon and now have been shuffled to yet another doctor an oncologist. Meanwhile there are days where the pain is unbearable and the vertigo is like having your very own amusement park ride but you can’t tell the operator when to get off.

    The neurosurgeon said that there was no major artery feeding the tumor so the ortholaryngologist should be able to remove it with no problem. Just an extensive surgery. Now the ortholaryngologist is saying that the carotid artery is feeding it and they can’t remove it. The only option is radiation. I feel like a pin ball in a pin ball machine being tossed around. On my two hour journey back home after this news I must have cried all the way home. Plus now the pain and vertigo hit me big time because I was so upset. A common stranger on the street was more caring and spent more time with me than my ortholaryngologist did today. I clocked this doctor today and it was a total of 5 minutes she spent with me. I jumped in and said I came 2 hours here one way but that didn’t help me at all. So I believe that she will be “fired” like the rest of them. I have questions but I can’t get any answers from anyone in that hospital. What is frustrating is starting from square one again.. New doctor, new city which will be further away, long wait for the first appointment, me building trust, probably more test, and hopefully some answers. I have complained about this for 3 1/2 years now and if I follow what this doctor wants me to do it will be almost 5 years dealing with this tumor. All I got is this lousy large hospital bill for a surgery for something I didn’t have.

    Luckily, this is where my dysfunctional family comes into play. We put the “D” in dysfunctional but when the parents say “Circle the Wagons” we will circle the wagons. We are polling friends, acquaintances, and anyone whom we may have come in contact with to see if we can find someone who can help me or if someone knows of someone who can help me. They set up phones at the kitchen table and it looks like a low rate telethon call center. Plus we will reach out to my doctor friend pick his brain for more suggestions(he is in his seventies and if he could I know he would operate on me). My Mom told me it was like we lost your spirit today. But, ever the entrepreneur she suggests me to write a script to sell to Grey’s Anatomy to help with medical costs.(She wants to meet that McDreamy fellow badly) Everyone commended me for being so strong but I have fallen apart piece by piece over the last four weeks and it shows. All I can say is stay on top of these doctors and learn that you can “fire” them just like your mechanic. I know my body and I knew something was wrong. It wasn’t TMJ, I wasn’t crazy, I didn’t have chronic ear infections that I refused to take my meds for, and I certainly didn’t have cholesteatoma. My next question for the next doctor will be what happens if I don’t remove it? No one either seems unable or unwilling to remove it.

  24. Hi Mandi
    Thanks so much for doing this – I work in photography too with my husband in Cyprus.
    I was diagnosed January 2010 with a glomus jugulare tumor following ear surgery to remove what they thought was a polyps.
    I had had ear problems for around 6 years from when I lived in the UK. Lots of dizziness, vertigo, hearing loss, ear infections, tinnitus. The dizziness continued since my moved to Cyprus in 2006. I got an ear infection in Oct 2009 and when to an ENT specialist. He couldn’t clean the ear, so sent me for a CT scan which showed what they thought was a polyps which led to my operation in Jan last year to clean my ear and remove the polyps. During the operation they started to remove the tumor as they thought it was a polyps, the bleeding was too much and they halted the operation. After the op my hearing was nearly fully restored, my dizziness hardly noticable and I felt fantastic following the operation in January. But in March I started to feel slightly dizzy again and was given tablets etc. I carried on ok and then in Oct 2010 I went for my regular visit to ENT and he decided to give me a CT scan. It revealed the tumor was still growing and I would need surgery in the next year or so. It cannot be done in Cyprus as there isn’t anyone qualified, so it looks like it will be the UK. I now have to find a good surgeon (they mentioned it might need to be 3 different surgeons. My symptons now are a slightly blocked ear, some light headedness and I feel tired a lot of the time. I am very uncertain about having surgery as I haven’t found a surgeon I feel confident of. As this is a rare tumor it worries me the operations are not performed very often. I am worried about the recovery time and whether my symptons will be worse than they are now after an operation. Can anyone recommend a surgeon I could go and see in the United Kingdom? I would be grateful for any help anyone can give me.
    Thanks for listending

  25. For Karen and others
    I live in Northern Ireland…..can’t believe I have ‘accidently’ found this site after 3 years of researching !!
    My experience of my glomus jugulare tumour started back in 2005…I had been having migraines and weird disturbed vision, as if one eye was taking longer to catch up with the other one when I looked to one side( when driving especially at junctions) . I was referred to a neuro surgeon by my GP and he took a full history and decided to do an MRI scan of my head. Now although I also suffer from Fibromyalgia I didn’t think the two were connected….Anyhow, the neuro surgeon called me back after scan and said that all was fine….scan was completely clear and radiologist had reported nothing untoward. I will go as far as to say that I was sent home with my tail between my legs for having what he said was probably a bit of stress connected to my fibromyalgia.
    So, 2 years on after trying various stress relief programs and medication for migraines etc, I still was in the same position. Coincidently my husband had a minor ENT op and after me starting to complain about a weird ‘fullness’ in my ear sensation and a pulsatile tinnitus, he suggested I go see his ENT surgeon in Belfast. He looked in my ears and asked had I been poking in the right one as it was a bit red. Sooooo after a closer inspection he sent me for ct scan and the radiologist suggested a further MRI scan as he thought he saw something that could be a small bulb type glomus. At this stage he (ENT) wasn’t terribly concerned and said that he could remove the bulb and all would be back to normal. However a couple of days after the scan the ENT surgeon phoned me to home in the evening and like someone else says in the posts….you know thats not good news.
    So the MRI identified a large tumour that had started (they think) on the carotid artery and eventually grew (slowly) up into the base of my skull and just penetrated the brain and into the right ear. ( what the ENT doc had seen in my ear was the tumour where it had broken through and started growing into my ear). Next news was about the complete rarity of the tumour, something like 1 in 1.2 million per year (dont quote me though) and because of this, there were no surgeons in Ireland who could deal with it…..However my ( totally fantastic) ENT doc knew of one of the most experienced and fantastic otolaryngologists in the world ( a pioneer in cochlear implants also) and he worked in Manchester. So for Karen above this man is Professor Richard Ramsden and he is literally the man who saved my life !!! I cannot say enough about how fantastic this man is !
    So then I met the prof and he told me straight that if I didn’t have the tumour removed it would eventually kill me, which I got the impression wasn’t a long way off. He asked about any strange sensations in my voice,hearing or choking etc. He explained that to get the tumour out he would have to remove all parts of my right ear (internally) and possibly sever my facial nerve, or at least bend it out of the way to get to tumour.Also my vocal chord would be affected. Because it was also penetrating the brain, he would work in the surgery with a neurosurgeon who could ‘remove the brain part of tumour). Basically he said it was about as big an operation as you could get. There was a chance of death, stroke etc but it was too big for radiation and as it was attached to the carotid artery the blood supply to the tumour was only going to get worse.
    First op was embolisation to stem some of the blood flow to the tumour as its highly vascular. That took about 3 hrs and I had a reaction that caused 1 eye to not move and I stayed in intensive care for a few days. Then the op took place and lasted aprox 12/13 hours.
    I wont say much other than I fealt that death was preferable to the way I felt after surgery. I was in hosp for about 3 weeks and begged to get home as I knew I would recover better at home. So, initially I couldn’t swallow and had a feeding tube through the nose. ( yuck) My voice was changed for good.One vocal chord and r side of face was paralysed. I was deaf in r ear and had nerve damage to my r shoulder and neck. Part of the tumour had to be left as it was attached to carotid artery and was too dangerous to remove. Fat was taken from my stomach to fill the gap where the tumour had been. My r eye wouldnt close for a while…..there was more but I am remembering as much as I can ( sorry this is so long but want to be honest and it’s sooooo good to get it off my chest ! I felt like a freak and I didn’t cope well. I had various physio, electro therapy to face, speech therapy etc
    So now 3 years on my facial paralysis is a lot better but in no way where I would want it.I can’t smile and that bothers me most. I learned ways to help swallowing. I still choke frequently and must drink with food to make it go down. My eye closes much better now. I cough constantly and the pain in my shoulder gets me down. Emotionally, I am still not right but hey I’m alive !! Physically, I am due to get a BAHA, I’ve had voice box surgery to improve the strength of my voice.
    My surgery was horrendous and I will never be the same again…..I get yearly scans to check on the re growth and bit still on my carotid artery. I may need gamma knife surgery at some point in the future ….However, I am 41 now and I have 2 kids that I live for !! If it weren’t for the prof and Neuro surgeon, I wouldn’t be here and I have nothing but praise for them. There are good days and bad days but as long as I’m still here then I am one LUCKY lady !! Do not accept sub standard medical care…..research if you have to but find someone who knows what they’re doing !
    Thank you so much Mandy, I cannot believe how lucky I have been to stumble upon this site xx
    Again, really sorry about the length of this but it actually helps to get it out of your system.

    1. Thank you for sharing your story. I have also been diagnosed with a Glomus Jugulare Tumor.
      They tell me mine is too large to operate on or remove. I have completed 28 days of radiation.
      I am waiting for the effects of the radiation to ware off so I can better judge how the tumor is doing. I still feel the pulsating in my ear. I still have the left shoulder pain. The facial pain has stopped. I do have issues with swallowing and I have painful gums. I am not sure of what my future prognosis is but it is helpful to read all of these posts.

  26. Hi all
    Doctors found glomus jugulare in my ear just smaller than size of golf ball in April 2010. They wanted to operate in December however, my son is getting married in May 2011 decided to hold on until July 2011 . Not well at all however, been treated by friends, family and husband as if I am fit as a fiddle. I am good at hiding how I really feel. Nova adrenaline is doing my xxxxxxx xxxx in. Not sure what else I can say.

    All the best to all xxxxxxxxc

  27. HI EVERY body
    how are u mandy ?
    i want also sher with by my mother story she also have glomus jugulare
    but she was do the operation in sept after the operate she have problem in
    Swallowing and she take her food bu G tube coz she have aspiration when she eat or drink water the tube still in her may be for 1year and 5month then she remove it but she still drink water with substance called thinker what about u mandy ??
    she also have problem in her vocal cards,Seventh nerve palsy
    and loss hearing this problem still
    I hope from ALLAH the safety for all

  28. Mandy,
    Just a qucik note to let you know been there done that unfortunately 2 times the first time is was a piece of cake. back at work in 6 weeks. the second time my Dr. could not do the surgery We tried radiation but this stubborn thing kept right on growing. My Dr. sent me to Tn to have my second surgery. Embolization took 5 hours, surgery took 18 hours. I have paralysis and an emplant in my throat to speak but I consider myself blessed. Only 1 hitch to my story is the fact the the tumor is back for the 3rd time. No new treatments that I can find because I can not have surgery again too dangerous. I don’t know where they get the old and slow growing information about this thing because I was only 35 when I had my first one that was in 1997. The only left for me without new procedures is to monitor its growth.

    Hope you do well and to let you know that some of the paralysis will heal.

    best wishes and prayers

  29. Mandy & others,
    I want to thank all of you first off for sharing your stories and also say that I am so glad to hear the success that you achieved during your struggle with this.
    My girlfriend was diagnosed with G.J. about a week ago. We have met with a couple different doctors and there is definitely some difference in opinions between the two. We have so many questions and are so nervous, scared and worried.
    First of all we met with a doctor that told us that this tumor is a large tumor (2 inches) and we were wondering is that a common size for these tumors or are they normally bigger or smaller? He told us that his first step is consulting his team about the tumor and seeing what they as a group feel the best approach is. He is telling us that more then likely it will be surgery in May. He told us of the risks with the surgery which are exactly the same most of you have listed. He told us that because of the location (lying on the sensory nerves and pushing on the brain stem and cerrebellum) that all of the tumor will not be able to be removed. He said that surgery would be performed to remove as much as possible and then radiation afterwards to try and get rid of the rest of the tumor.
    The second doctor we spoke to said that he does not want to do surgery right off. He prefers trying every option before surgery because of the risks of surgery. He mentioned that there is a risk that she may have to have feeding tub for a while maybe even forever (is this common?) and also the other risks that the first doctor mentioned.
    We have so many questions and would love to hear some more about each of your stories (if you don’t mind sharing) and some opinions from you, and any advice that you would have.

    Once again thank you for sharing and I hope that you all continue to have success in your future.

    Best wishes to each and everyone of you!

  30. When reading about these tumors they state they are found 1 in 1.3 million….sounds more common than that to me.

    I am 34 and was just diagnosed 2 weeks ago with a very small glomus jugulare tumor. (what is really small? I don’t know.) It was found early, though, as my only symtom is the pulsate tinnitus. I am now waiting on my referral to go through so I can meet with the neurosurgeon. Needless to say, I am very nervous….and can I also say that while I am glad to read your story, your pictures have me in tears. I sing, and I am most nervous about loosing that ability….as well as any facial paralysis…..or maybe I am just scared. :{ I didn’t have any idea what to expect as far as recovery and time in the hospital – now I do….
    Thank you for your story.

  31. *Update*
    I found a great surgeon in New York. He spent a lot of time with me and my family talking about this tumor. I appreciated that. He isn’t like a happily go lucky guy and has a wry sense of humor but I am not paying for that I am paying for a competent surgeon.

    I had my embolization/angiogram done about two weeks ago. At first they said I was going to be awake but sedated for the procedure but the doctors decided later to do it as General anaesthesia. The procedure was about 3 hours and I stayed overnight in the hospital. The neurosurgeon who did the embolization is one of the best in the United States he has operated on many celebrities and dignitaries so I felt lucky for him to do the procedure.

    Four days later I had the surgery for the tumor removal. The doctor and nurses thought the procedure was going to be 3-4 hours but when they opened me up and really got a look at the tumor they realized it was much, much larger than anticipated. The actual surgery ended up being 7 1/2 hours. But the doctor said it was quite the success and there was no damage to the facial nerve. I was treated with some radiation afterwards because a tiny part of the tumor could not be removed due to being a matter of life and death.

    The recovery has been not what I expected. After the embolization I have experienced these incredible migraines that last a few hours. I wanted it to be so quick but the first few days I was tracking a fever between 101-104 degrees and the pain was unbelievable. After surgery it felt like I was shot in the head. Very unusual experience for someone who doesn’t like any pain meds even the over counter ones like Tylenol. Coupled with the nurses who were less than kind when I asked for pain meds and caused me not to sleep that night after surgery. The worse experience was when my call button fell on the floor which was the same side of surgery. I called for help but no one could hear me so I was forced to reach for the call button myself which put the pain I was in at it worse. By the time the nurse got to me I just collapsed in her arms crying for 10 minutes until I passed out.

    My advice for anyone is to have someone with your at least a few days after surgery. This person can field calls to the doctor, make sure you take your meds, help you around the house. When I got home I was a crying mess in pain and walking was a chore. My mother really helped me the first few days afterwards. I am not 100% yet nearly two weeks post surgery. I tried to overdo it earlier today as if I was on a normal schedule and really caused some problems for myself. The migraines and the ear pain were quite intense today so I know I will need to take it easy, get more rest, and let things like housework fall to the side for now.

  32. Reading this makes me so grateful that I only had an ear tumor, not a jugular tumor. What concerns me now is that the ear tumor was something a health care practioner could see. Jugular tumors do not present until they grow large enough to enter the ear drum area and can be seen. I am now 3 weeks after the surgery and feeling fine, except that the “gel” packing in my inner ear has not all dissolved and so things are still a bit muffled. I just had another of my 3 day type migrains and an odd thing happened. The pain of my migrain generally begins on the right side of my head and travels around and ends up on the left side of my head. My tumor was in my left ear. This time, my headache started as usual in the right side of my head, by my right ear and stayed in the left side of my head. The left side of my head is painfree! I am wondering if that tumor was a receptor for the pain, and now that the tumor is gone, I don’t have pain in that side of my head when I have an episode. I have gone back to my general practioner and asked for her to establish some standard of testing to ensure I do not have any other glomus tumors. She is so uniformed about glomus tumors that she went into a bit of a tiraide about how the insurance would never pay for an MRI or any investigative measure and as far as testing for a histochemisty (? spelling), she has no idea of what exactly to test for on that. She said she would have to do some research and see if there was any basis for further investigation. Mindblowing really. I told her about my experience with the headache and she said that headaches were indicative of so many factors, we really couldn’t pin that on the tumor—even though a symptom of glomus tumors is headaches. So, I guess I have to wait for her to “find the time to research” the topic. The health care system is not set up for this type of diagnosis or doctor interaction and because these are rare, my gp isn’t really interested in becoming educated about these tumors.

    Lastly, you all have mentioned something about the shoulder. I have had shoulder blade pain in my right shoulder for a very long time. What is the connection between the shoulder and glomus tumors? I get massages to try to ease the pain, and often the massouse comments that I have a swelling between the right shoulder blade and the spine.

  33. i have a glomus jugulare tumour.i have a date to go into addenbrooks hospital wednesday 18th may..was told its a all day operation.will let you know how i get on when home after operation when im feeling better..

  34. Again, I have been searching for more personal stories for some time. Dumb luck that I found these postings. I was diagnosed with a GJ tumor and was treated with Gamma Knifeabout 3 years ago. The diagnosis was shocking to say the least not to mention the odds of getting this. The radiosurgery procedure itself was much more intense than I had been prepared for. Maybe thats for the best. I did not know I was clostrophobic prior to this either which took more meds to manage. I agree with someone advocating for you and staying with you for days after the procedure. I went home 7 hours after this outpatient procedure with lotsa pain meds in me on an empty stomach. No one prepared me for vomitting in the toilet just hours after that cage was unscrewed from my head. Now that was bad. My head was ready to explode! Pain was not managed well at all in the many hours that followed. Finally I was urged to call the on call MD ,told him my symptoms got new meds and substantial relief followed. Again, you need an advocate post surgery for precisely this reason and others.
    So now it is 3 years post gamma knife radiosurgery. No further growth of the tumor based on the scheduled MRI’s. I still had many aftermath symptoms and had to explore treatment options on my own. The ENT surgeons office was no help as their” treatment goals had been realized.” That was frustrating to hear. Imagine no referral sources.Hard to believe. Full ear, felt like my skull was on too tight, head achy regularily, etc. Would chew gum to provide some relief and have a glass of wine which in retrospect only made my head feel worse. One day while waiting for a Rx at the local Walgreens drive thru I saw ahead of me a sign for orofacial DDS specialist. Never knew there was such a profession! They do everything in your mouth but your teeth. Nueromuscular specialists. Finally someone who would talk nuerology with me.
    They made a splint for me (immediate relief like my mouth fell in a hammock)signed me up for scull based PT and a skull based message therapist. I had no luck with the previous treatments of cranio-sacral therapy from both a PT and a message therapist. Had accuncpunture from 2 practitioners. Was game for anything as I did not know how I could continue to cope and move forward with my life much less work and be pleasant to my family.
    Four months have passed now and I wear this splint full time except for eating. Treatment time is at least one year full time and then at nite only after that. Had to retrain my tongue how to speak with it in. I stopped chewing gum and eating crunchy foods. Wine still hurts. Cranial message therapy has been terrific but not long lasting. Yoga works. Talking alot does not work. Get stressed or mad does not work as the mouth and neck nerves painfully tense up. Still feel like I have a dental instrument pressing on a nerve near the back end of the inner upper palate. The DDS has an advanced idea in using caspacian for this and will be starting an additional treatment soon.
    Somehow I have felt those close to me think this will all go away. I am beginning to feel that it has to be managed and coped with and will not go away totally. I must say I have had a substantial amount of sustained relief with the oral splint. Maybe it will help someone else with similar symptoms. Thanks for reading this.

  35. Heading to md Anderson in Houston for gj treatment….. Has anyone used dr demonte or giddley there? They seem amazing and figured out my problem immediately.

  36. I had a glomus jugulare surgery done in 2007 followed by Cyberknife. I am doing fine, except for occasional symptoms like swelling in the ear, lack of energy, balance issues and facial spasms that really do not affect my day to day life, but are worrisome. I have been having MRI’s done every year and the tumor has not grown Mine was a 2 cm tumor and could not be completely resected and I had to have radiosurgery. The symptoms are pretty bad after the surgery, but not to worry things will generally get better if you are in good health. Ignore it as much as possible and don’t pay attention to it as these thoughts may mess up what may otherwise be a normal happy day. Do the best that you can and don’t think much about it. Keep your mind busy with things you like to do and need to do. Take care folks. I pray for you all.

  37. Allson Campbell,
    I would love to chat with you through e-mail. Our experience with the tumor is almost identical. I had mine removed in 2009 and still struggling as well. I’m not sure how to go about getting you my e-mail address?? Perhaps Mandy can hook us up if your interested in writing??
    Jennifer

  38. had glomus juglure tumour removed last week in hospital 2 days only in lot of pain but thats normal..surgoen couldy takr it all away due to were it is so have to have 6 weeks radio therphy everyday.. it was a sucess there wasnt any damage to any nerves or swollowing..just feel if ive been kicked in head ear neck but it will get better in time..im still feeling dizzy with it thats normal..got to go back 2/3 weeks time for check up….had a embloizastion the day before op lasting 2 hours and the big op it slef was 6 hours 30 minutes ..

  39. It has been interesting to read everyone’s comments. My husband is scheduled to have his 3rd surgery to de-bulk the glomus jugulare tumor. He was first diagnosed in 1999 at age 25. After a 10 hour surgery most of it was removed. He was in the hospital for 9 days to control a CSF leak. Then went home and suffered through 20 some radiation sessions that were supposed to keep the residual tumor from growing. In Nov. 2008 the MRI showed a lot of growth and surgery was done again. This time only 85% could be removed, a 5cm tumor still remained (huge as far as I’m concerned). An MRI in 2009 showed a few mm growth. No change in 2010 and then a recent MRI (6/2011) showed another few mm growth so surgey is now scheduled in 8/2011. He has a BAHA for left sided conductive hearing loss, he has had a vocal cord medialization to improve his voice and minimize choking, he has facial weakness and trouble swallowing due to loss of sensation in his tounge and throat. Drs. don’t seem to think this will kill him, but it has already caused so much destruction and one day they will have to stop cutting him open. It sucks!

  40. Hello again, sent a message in January of 2011, it is now June and still have not had surgery, my case is so unique that the surgeon in Calgary is working with neurologists in Edmonton to try find a solution to this never ending problem. I have had a PET scan done in March, which thankfully showed no other tumors in my other organs, and urine tests showed no chemicals being put off by tumor, or I guess surgery would have been e done within forty eight hours. This waiting is taking a toll, have just about given up. By the end of the day I have pain in the back of my head and neck. Sneezing, coughing, and especially bending over makes you want to cry, I try to stay away from people with a cold, because I think the pain would darn near kill me. I don’t think being UNIQUE is a good thing. Good luck to everyone else, hang in there.

  41. To Debbie,
    Had radiation in Mar 2010 for a tumour that drs said was inoperable – it is now deemed ‘stable’ but I have a number of cranial nerve problems. Days usually start off okay but have pressure and pain by the end of the day. Trying to get back to work but still in limbo…… And there is always a ‘what if’ in my mind.

    I’m in London, Ontario – would love to chat to see how things are handled in another province and with other doctors. Feel free to contact me at smithe245@gmail.com

  42. @ Debbie. I know the waiting process is extremely long and can be tedious. It brings down the most stable of people. I waited nearly three years and one botched operation to finally get my glomus taken out. If you like to talk to someone or a shoulder to cry on you can reach me at niteycat@gmail.com

  43. Hi Guys,
    Thank you for the website Mandy. Had my surgery June 2, 2011. I had the embloization two days before. The worst for me so far was the ivs. My arms looked like yours Mandy. Veins kept collasping.
    Got out of the hospital 3 days early since I was doing so good. I am eating but very slowly, I do asperate alot. I am hanging in there with it all Hoping that my energy level comes up soon but I know that is my body saying to slow down.
    Drs tell me that they got it all and did not have tocut any nerves.
    I was in Chicago at Rush.
    Would love to talk to someone. My voice is so raspy. I hope that it and the smile will come back soon.
    MArilyn

  44. My surgery is scheduled for July 5 at UW Madison……it sounds like I have the ‘easier’ of tumors- no embolization and only 2 days in the hospital. My surgeon says my tumor is very small – mm in size, and caught very early. Of course, I am nervous, but know that my surgeon is one of the best….he’s been doing this surgery for 20 years. Oddly enough, what I’m most nervous about today is getting my very long hair cut.

  45. Hey Debbie,
    That bothered the heck out of me too. On top of everything else, I am getting married October8 of this year. Had my mind made up that I woul dhave long hair for the wedding,.
    I went to a great beautician and told her everything abou tthe surgery. She cut my hair and truly it does not look like I am missing a thing, it has been easy to care for too.
    I told the dr that this was bothering me and he told me ok let me tell you what I am going to do. He carefully left enough hair down around the ear and pulled the rest up in a ponytail. the shaved there. So not when the bandage is off you cannot tell. I have been able to wash it and take a shower after the bandage came off.
    Monday I go back to the dr. It’s been two and half weeks. I am hoping that the stitches ans staples come out. I am doing awesome!
    I have had no pain at all. I do itch though and that has been driving me nuts!
    I ahve a gel pack in my ear that is driving me crazy like a pimple that you just gotta pop. I am leaving everything alone. I ahve been so good. Now he took some fat(wish he had taken more) out of my tummy to fill in my jaw. That scar is healing well but had a little infection and had to clean it out with peroxide and now just some antibotic.
    Honestly the surgery wasn’t that bad. The swallowing is hard and I love soup thank goodness! I just take it very very slow. I have lost a few pounds by doing this too..
    I know that prayer ahs gotten my thru this as well as the skill of the surgeon’s hands. I will pray for you!
    Marilyn

  46. Marilyn – Thank you for the encouragement. I have friends around the country praying for me and this surgery…especially the surgeon – I know that the Lord will take care of me…..humanly, though – I am a chicken! 🙂 Sounds like you will be back to normal for your wedding….I am so glad! Aren’t we so blessed to live in a country and in a time in history with such great medical care?

  47. Hi Debbie,
    I got out the stitches staples and gel pack yesterday!!!
    I have total hearing in my ear! My doctor told me he tried something in my ear instead of just removing the eardrum liked he had warned me about. It worked!! Everything was muffled since the surgery and then he took it out and whispered in my ear, “can you hear me now?” I jumped with excitement !!!!
    my voice is still very hoarse and it is hard to swallow but I am learning. I take small sips with everybite. It is exhausting to eat I must admit. I eat alot of yogurt, and soup. Sweet things seem to bother me alot!
    The funny and most blessed thing is I was a smoker and I hate cigarettes now~ That is a miracle! I have had a hard time getting my breath but as he said I am getting plenty of oxygen it is just that all of the things in my throat are still waking up and getting unbruised. He did not have to cut any nerves. My shoulder was hard to lift but I could do it, Now two weeks later its back. I am starting to smile and the other night I was laughing with my son and his girlfriend( I am quite funny under and coming out of anthestia I guess) It felt good to laugh but it was definately a wierd feeling. SO, now I am going to keep on doing it!
    I am so glad that I ahd this website to know that I was not the only one out there.
    It seems like a long road but I am here to support you all of the way!
    did you decide on your hair? I still have no regrets. I must admit it does pull my scalp to brush and I have been using lots of detangler that kids use!
    I will be happy to help you in anyway that I can.
    BTW I live in Illinois and only about an hour from Madison.
    Let me know if you need or just want to vent!:)
    Marilyn

  48. Marilyn- I’m so glad for you!!!

    I got 6 inches cut off my hair today- feeling pretty cute! :). I’m really just ready to get the whole surgery over! Thank you for your encouragement! (and extra congratulations on the quitting smoking!!! :))

  49. i had a operation in may this year 2011 at addenbrookes cambridge hospital to remove a rare glomus jugulare tumour it took 6 hours 30 minutes to do,the day before that i had a embloization taking 2 hours..i was in hospital only 2 days after operation..they couldnt take it all away cause of where it is.so ive now got to go up again to have mask made for radio therphy for 6 weeks monday to friday..i had my 3 weeks check up last week the surgeon was very pleased on how it all went ..i dont have any nerve damage or anything .i still have a bit of a numd and stiff ear .and my taste buds are not back to normal yet .but they said thats all normal cause they had to mess about with then to get to the tumour..so all is looking well..the operation was ok i was a sleep for that..my neck and head ached for about 5 days after all that is normal …i ended up having only a 5 inch cut behind my left ear you cannot even notice it now.and didnt hardly have any hair cut offyou cannot notice it..so in all everything went ok…so other people out there please dont worry everything will be ok..

  50. Hi Tina
    Thank you so much for sharing your experience. It is good to hear such a positive experience and I wish you a full speedy recovery. I have now contacted Addenbrookes hospital to see if they can help me. They replied quickly and have passed my details on to the ENT. (You can read a little more about me on this blog 15th Feb) My fear is that I will have worse symptons after the operation than I have now. Originally from the UK I live in Cyprus and the operation cannot be done here, but I am worried about the length of time I would need to stay in England after the operation too ie radio therapy etc. I don’t wish to be a burden to anyone and also the cost of staying in England for that length of time as I am self-employed so don’t have any sort of financial support if I am not working.
    Can I ask you how were you diagnosed? Mine was a biopsy following ear surgery and several CT scans. I haven’t had an MRI scan as yet.
    Also what were your symptons before the operation? Thank you again for your support. Karen

  51. hi karen reply to your question i woke up on morning with this noise in my ear/head it sounded like my heart beating i could hear .so i went to my family doctor were i live and they didnt know what it was so they wrote to hospital and that was it really .went to hospital had hearing test and ct scan ,the ct scan wasnt really enough so i had to have a mri scan. thats it really then addenbrooks hospital made me appointment for the ENT CLINIC and was told there that i had a rare glomus jugulare tumour as i said before excellent surgeon ..please let me know how you get on take care …

  52. HI KAREN FORGOT TO WRITE MY FAMILY DOCTOR TOLD ME I HAD A EAR INFECTION ..IT WASNT A EAR INFECTION IT WAS THE RED AND BLUE TUMOUR HE SAW ,AS I SAID THEY DONT KNOW ANYTHING ABOUT THEM.LET ME KNOW WHEN YOU HEAR FROM ADDENBROOKES THEY ARE SO GOOD THAT DEPARTMEMT ENT CLINIC

  53. Thanks Tina it really helps having support. I have had this tumour since about 2004 along with the whooshing/heartbeat noise. Kept going to the doctors in the UK with ear infections and they did nothing but supply antibiotics. Even after a vertigo attack in Oct 2005 in the UK which I ended up in hospital, just before I moved to Cyprus, the ENT just said it was probably labs!!! So I moved out here and didn’t get any further until another ear infection in late 2009 and thats when I saw the ENT guy in Cyprus. They couldn’t clear up the ear infection and so decided to operate to clear my ear and also remove what they thought was a polyps. Part way through the operation they had to stop as I was losing too much blood and thats when the biopsy was taken. I understand my tumour is small and growing slowly, but I must have had it for around 7 years now. I will let you know how I get on with Addenbrookes. Its difficult when you live in Cyprus and are trying to find surgeon in the UK to remove such a rare tumour. Luckily Cyprus are in the EU so at least the medical costs should be covered from the contributions I pay here. Thanks so much 🙂

  54. HI MANDY HAVE YOU TOTALLY RECOVERED NOW FROM OP BACK IN2009 .I HAD GLOMUS JUGULARE TUMOUR REMOVED MAY THIS YEAR 5 WEEKS AGO ,STILL CANNOT TASTE THING RIGHT AND EAR FEELS FUNNY STILL .WAS TOLD NEED 6 WEEKS RADIO THERPHY MONDAY TO FRIDAY.. I ENDED UP ONLY HAVING 5 HALF INCH CUT BEHIND EAR .WAS TOLD IT MIGHT GROWS BACK AFTER RADIO THERPHY .HAS YOURS STARTED TO GROW BACK OR ARE YOU OK ..HOPE YOU ARE OK .DONT REALLY WISH TO GO THOUGH THAT AGAIN I DO KNOW. REGARDS TINA HEWITT

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    Author

    @Tina – yes and no! It took about 10 months for me to feel normal again after the op. I’ve lost some mobility in my neck on that side and have some pain due to the ear drum perforation. I had packing after the op through my ear drum and down into the ear canal to keep it open while healing (you can see it in the photo above), when the packing was removed it never closed over properly. My last mri check up showed an ‘artifact’, the surgeon feels it’s a fatty deposit left during surgery, the radiologist feels it’s the tumour growing back. Neither can be sure without opening me up again so it’s being reviewed once a year to see if it’s grown. Interestingly I still have a thumping in my ear, apparantly that can happen when you have a perforation but it is rare! sounds about right doesn’t it…

  56. Hey Mandy,
    Got a question for you…when did you fell like the packing went away. I am packed so tightly and numb on the side of the surgery. Everything else is great…except tiredness…I go to bed everynight by 7 since I am just not a napper.
    Thanks for all of this:) Marilyn

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    @Marilyn – after the packing was removed my ear felt a little strange for a couple of weeks, but the numbness took more like 3 or 4 months to go although I could feel it improving. And yes I know what you mean about the tiredness, that took the longest to improve – but I do have a 5 and 8 year old…

  58. hey mandy,
    I totally understand about the kids and being busy!!! I teach in the early childhood field.
    I guess that I didn’t explain myself right..he took fat from my tummy(not nearly enough), he said that he put packing and fat inside of my jaw to make it look balanced. I guess that it will reabsob over time..I don’t get it at all. It is all around where my ear is and honsetly you could pierce my ear a million times and i am sure that I would not feel it. Did they do that to you?
    I have no pain at all and haven’t but where they cout the fat out of my tummy it feels like more is trying to bust through!!!
    That’s what I was getting at.
    I go back August 1st and then I will hopefully get to go back to work! i miss the kids that I work with!
    Thanks for your imput!
    Marilyn

  59. Has anyone post op experienced headaches and pain after the tumor was removed? This is strange but, I feel like my body misses the tumor. I was told that it may be a issue with my nerves because everything else is fine.

  60. According to my doctors my tumour was too large and too difficult to remove without a lot more damage to cranial nerves (nerves already permanently affected by the tumour) and the CNS. So I had a 5 week course of radiation a year ago in an attempt to stop the growth of the tumour. Anyone else in the same situation? If so, would like to know how well and completely you recovered and how long it took to reach the ‘new normal’.
    As for tiredness / fatigue – I continue to battle with this. Now put a lot of it down to my brain and body having to work slightly differently (have hearing loss, slight balance issues, etc.).

  61. Hi Liz,
    I havent had headaches at all. I was told that this was normal though. I am still experiencing a little struggle lifting my left shoulder even though I was told that they did not cut any of the nerves. It feels like a pull.
    I guess that the tiredness will continue for awhile. I just will not be able to burn the candle at both ends anymore which is good for me, i need to slow down.
    I wish all of you the best and Mandy thank you again so much for this sight and not making you feel all alone!!!
    Marilyn

  62. Dear All. well its 15 months since my surgery to remove my glomus jugulare (Kings, London) and a quick update. Well I am doing brilliantly. It was a 9 hour operation and what tumour they couldnt remove they were able to treat with a one off ‘gamma knife’ radiotherapy. I have had a scan a year post-op and they say the tumour isn’t growing. Originally 4 of my cranial nerves were affected (tongue, voice, palate and shoulder) but apart from the tongue, the rest are what I consider to be near normal. Unbelievably (my surgeon had never seen this before), my vocal chords are now moving when he previously thought they were permanently damaged – well the left side one. I suffered with lots of tiredness for around 1 year and the radiotherapy, although only a one-off treatment, made me more tired for a few months. I have a 4 and 6 year old who keep me busy and I have returned to lots of exercise which makes me feel like the ‘old normal’. So apart from trying not to overdo things I have 2 remaining symptoms – damage to tongue which means I have to eat more slowly and First Bite Syndrome – something rare which means I get pain on the first bite of each meal. If anyone else suffers this, do let me know. It is meant to disappear after around a year but not much change so far – I am just used to it.
    Good luck to everyone. I think I am very lucky with how well I have faired, maybe my tumour was caught before too much damage was done! Ali x

  63. hello karen it me again just wondered if you have heard from addenbrookes hospital yet.you told me that you got in contact with them about your problem youhave with your ear..my taste buds are still nowhere near right it horrid when eating things taste horrid.and my ear still cannot feel it yet have been told its takes 5/6 months sometimes longer for it to come back great..got to go again 22nd july addenbrookes for hearing test whichiknowis a lot better then the start of operation which is good.ive just washed my hair for the first time with water and shampoo..i have been using this stuff youcan put on it instead of water..my god it feels better now for having a good wash.just got to wait now to have a mask made forwear to start the radio therphy monay to friday for 6 weeks .think it will be sometime september..october time ..hope you get on ok with addenbrookes .please let me know take care tina xx

  64. HiDebbie,
    I have been thinking about you and was thinking about you on the 5th and hoping that you got through the surgery ok.
    I am on week number 5 and I am starting to feel ok with myself. I have finally starting to drive again.
    Hang in there and let me know how you are!
    Marilyn

  65. Hi Tina
    Great to hear you have finally been able to wash your hair!!! That makes a lot of difference to how you feel.
    The lady I need to speak with at addenbrookes hospital is away at the moment, so still waiting. I have been doing more research and have found that invasive surgery is not always done now for this problem in the USA. I have been recommended Cyberknife surgery which is non-invasive. It reduces the size of the tumour without removing it so reduces the symptons. I really want to avoid surgery if its going to give me more problems. After my surgery last year they removed part of the tumour as at the time they thought it was a polyps. The op was done through the ear canal but it bled so much they had to halt the operation. My hearing is much improved now, its the dizziness that is the problem but it does come and go and some days I feel great, others awful. I do get very very tired too especially as I am on a computer every day of the week. I will keep you posted re addenbrookes hospital and I hope you have really good results when you go this month for your hearing test. Let me know how you get on karen 🙂

  66. hi karen thanks for your message.addenbrookes will i know operate from behind the ear .people say tomeyou didnt have operation then .i say yes you cannot hardly see where it was done now.if you have face book on computer do you put in my name tina hewitt it will be me with a picture of my husbards old car he had its a green one .there is a picture of my cut on there my daughter taken the photo..it was taken only 2 days after operation.all i can tell youis i had surgeon mr p axon he is brillent and good at his job.. are you on face book at all.doyouhave email address be nice to keep in touch and let each other now howwe get on..had operation on a wednesday and out of hospital the friday and that was after a 6hour 30 minute operation wednesday..dont forget pleasele me now ow you get on..if you dont hear anything fromhospital just give them another ring and remind them. take care tina hewitt..

  67. I’m having surgery to remove a glumos jugulare tumor on the 19th of this month that I’m told is large. Quite nervous. I have had migrains, left ear pain and throbboing, left vocal cord paralysis, left trapezius nerve damage, dysphagia, tongue atrophy, dizziness….yada yada 🙁 Well the surgeons tell me that I have a fifteen hour surgery. The middle ear will be removed permanently and then the neurosurgeon will go after the tumor. It does have adrenaline so I am on alpha blocker presurgery and will have the embolization the day before. Nervous what to expect. Unfortunately I believe I was misdiagnosed 7 months ago when I went to hospital with all these symptoms after extensive mistreatment for ear infection and sinus infection and I was given a carotid artery bypass which was major and my symptoms still persisted which by the Lords hands sent me to a neurologist who found the tumor. Looking for answers for what to expect.

  68. Lori, my husband, who I think is the only male with this tumor, has many of the symptoms that you desciribe. His first surgery was in 2000. He didn’t have a feeding tube or a trach so I can’t comment on that, but he had a 10 hour surgery and recovered quite well. After a few days he was just taking tylenol for the pain. I guess that the pain from the surgery didn’t compare to the pain the tumor had been causing. The nerve damage is unfortunately persistent, but there are some things they can do later to help. He had a vocal cord medialization which minimizes the choking and he has a bone anchored hearing aid which helps him hear. Where are you having the surgery? We live in Maryland and he goes to Johns Hopkins. I am sad to say that his tumor has grown again and he’s about to undergo his 3rd surgery to remove what they can. They say it will be the most extensive surgery he has had. This is certainly not an easy tumor to deal with, especially when it gets so big. Best of luck to you.

  69. hi tal cambridge lori hope this letter finds you ok.i had glomus jugulare tumour removed inmay this year .i had a embloization the day before it was fine.it took 2 hours to doand they gave me something to calm me down.so that was fine didnt care about it then..then i had operation to remove tumour the next day took 6hours 30 mins to do i was out of hospital 2 days later .which i thought was good for something so big to have done..addenbrookes hospital cambridge is were i had it done,fantastic place and surgeons.ihave no taste buds at moment and my left ear is still numb but thats normal i was told takes months to get right again..they coldnt takeall tumour away so i have to have radio throhy for 6 weeks monday to friday at addenbrookes .honestly you will be fine..a least you are asleep for the big operation like me so thats good…i didnt need a feeding tube or tracheotomy i was very luckythey aresovery pleased with how its all gone..no facial nerves damage or anything that you do get about 75 per cent of people get that ..take care and let me know how you get on…regards tina hewitt

  70. I had my surgery on July 5 and God was so good to me. The tumor was smaller than the scans indicated and in the end the surgeon only had to cut behind my ear – not on my neck at all. I went home on July 6!!!! I am recovering and feeling very well. The antibiotic gel pack in my ear is still causing me to have difficulty hearing out of my left ear, but that should improve within a few weeks. I am so thankful.

  71. Dear all of you!
    Thank God Debbie that things went well. Tina are you here in the us? Ihad mine done in Chicago and I am doing well.
    Still having issues with the choking with food and take very tiny bites swallowed by water…I do go potty alot now!
    The voice is still very hoarse but that is ok by me..I was aloud mouth before!
    anyway I did wake up with a tube down my throat but it was not on I was breathing on my own. I was told also that I might have to have a feeding tube but when they started me on ice chips I just kept at it. The next day the residents came in with a orange juice and asked me totry. I told them look I can do it and not realizing that the juice was pouring out of the side of my mouth until my chest got wet. I now drink EVERYTHING with a straw.
    The best thing the doctor and residents told me was that my attitude was so positive and to keep it up and I have!
    I spend my days quiet and sewing on my quilts, I miss my job and the people I work with but I also understand tht I have to go slow. Tomorrow will be 6 weeks! I go back August 1st and then if things are good August 8th.
    I know how terrifying this is for you and they do tell you all of the awful things that could happen. It is so scary!
    Please try and remain positive and I will pray for you!!
    Oh and get your haircut if it is long that really was great advice from Mandy!
    Marilyn

  72. Dear Mandy,
    I m 28 years old and I just had a surgery to remove glomus jugulare tumor. The surgery spent 21 hours in Barnes Jewish hospital, St.Louis, MO. The doctor kept my ear canal and drum. They took 5*5 cm from my boon skull. My question, has your boon skull grown since you had your surgery?, if it is, is it grown completely? Thank you
    Naief

  73. hi i do not live in chicargo or have my operation there i had it in cambridge at addenbrooks hospital..didnt have no problems with bloody hair or anything they didnt even have to shave alot of hardly noticed it,

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    Author

    @ Naief I’m not sure what ‘boon skull’ is? I had some bone removed and it has not grown back, so that part of my head has sunk in a bit but my hair hides it quite well.

  75. Thanks Casey and Tina for your feedback. I now have more interesting news. I’m now told it’s not safe for me to have to surgery because I was given a thoracotomy and a right carotid artery bypass in February because the tumor was missed that was causing my symptoms and they believed it to be something else. Now I cannot have embolization on the left side as my vascular anatomy has been compensated from the surgery. Oh and there is a clot on the right side in my stent. So there want to do Gamma Knife Radiation. That’s where I’m at. The tumor is said to be large I don’t know if I will get the relieve I expected from the pressure and removing it. I think I will get another opinion also. I have been at Yale New Haven Hospital through all of this.

  76. so sorry to hear all yor bad news.its a shame they couldnt remove some of it them have radio therphy afterwards .sometimes thinks happen in our life to test us hats what ithink..hope you get sorted out .i new the pressure i had in my ear/head before operation was horrid coulndt sleep and headaches everyday and the noise was just to much 24 hours a day 7 days a week.now the noise is 70 per cent gone and headaches stopped straight after operation which was great.i have my 2nd check up at addenbrooks cambridge next friday after operation .hearing test as well which i knowmy hearing is alot better then before which again is good..i would love tosay to you go to addenbrookes for everything its a 2 hour 20 minutes trip for me one way nearly 5 hours in total but my god its worth it.ive told 1 person ihave spoken toon here to go to addenbrookes they are brilliant .the lady have spoken to addenbrooks shes just waiting on a phone call when person is back from hoilday…hope evrything goes well for you ..ps please let me know how you get on …tina hewitt…

  77. Perhaps what I share will be helpful, I hope it is. Following extended voice hoarseness and a tongue that deviated to the left, an MRI revealed a large Glomus Tumor extending intracranially. I was diagnosed in January and had surgery to excise my glomos jugulare tumor on March 23rd. I was fortunate to have access to a great team of surgeons at Duke University. In an eight hour surgery all of the tumor was removed; I was left with facial paralysis on the left side and loss of hearing in my left ear as my cochlea was removed to access all of the tumor. My initial hospital stay lasted ten days and went well. On May 13th I had surgery to address my paralyzed left vocal cord. A nerve was repositioned to tone up a muscle in an attempt to medialize my cord. A collegen-type injection was also done. Unfortunately, a couple weeks later I fainted at home landing me back in the hospital with a small brain bleed and a concussion. That prompted anti-seizure medication that did not agree with me at all. One week later I was back in Duke North with a very low sodium level which was easily corrected. I have had one additional vocal cord surgery to correct collegen gone astray. Today was actually a bright spot in all of this. We thought I would need a minor procedure on my lower left eyelid to correct a drooping lid that would not hold my tears. That muscle has tightened to the point that the procedure was cancelled for now. It has been four months since my initial surgery and I am back at work part time. My facial paralysis is resolving slowly. My voice remains weak and hoarse, my throat sore at times and all the phlem is an irritant. Swallowing is a challenge; I have lost 57 pounds to date. I need to stop losing as I am 57 years old and at my junior high school weight. My diet consists of protein drinks, polenta (corn meal), oatmeal, cottage cheese and applesauce. I am hopeful that my voice and swallowing will improve over time. One suggestion that took me a while to figure out. With pill taking, buy a good pill cutter, cut ’em up and take them with applesauce and a protein drink chaser. Water did not do it for me. I wish all of you well who are about to have this surgery and also all who are recovering from it. I hope you have great support from family and friends. It is quite the experience and I trust that none of us will ever be quite the same. Perhaps with time, we will all be better having gone through it. I am glad I came across this site, thank you.

  78. Finally someone who understands. My first surgery for the glomus jugulare tumor was in september of 97. Only took 5 hours to remove,feeding tube removed next day. Back to work in 6 weeks. had an ear infection in 2003 or so I thought. Wrong answer tumor back same place. Went through 30 radiation treatments stubborn thing kept growing. My dr. who is absolutely wonderful says it beyond what I can do now. Sent me to Nashville,TN seven hours away. Went there never met the Dr. only spoke on the phone. Discussed options as if there really are any other than surgery. 1 day later had the embolization, took 5 hours, next day 18 hours of surgery the dr says the radiation made the surgery more difficult. Survived, so thankful but no food, water,ice chips nothing for 11 days. Tried to buy a coke for twenty bucks. no luck. After a while sponges are just that sponges. My scar is located from the center of the top of my head around my ear into my neck. I am the only one who really notices. Due to the paralysis I have an implant to speak. My right vocal is paralysed. I also had to have a gold nugget put in my eyelid because my eye would not close completely. Had to be removed. Allergic,what woman should be allergic to gold? I am so blessed to only have the damages that I have I however have my 3rd tumor. No treatment this time but I try to think of quality vs. quantity. By the way I truly understand the hair thing If I had of known I would have shaved my head myself. Wonder if that would have cut the cost of that awful haircut the Dr. gave me. HA HA. I however had a wonderful nurse in the ICU who actually washed my hair. She kept my spirits up during all that. I think I need her now

  79. hi linda jjust read your blog ,you poor thing u have gone though it.as i have wrote b4 i have had operation back may this year,they coundt remove all of it so ive got to have radio therphy..for 6 weeks.,just had my 2nd checkup last week at addenbrookes since my operation had hearing test which has inproved the surgoen told me that i need another mri scan b4 i have radio thephy ,for got to say it is glomus jugulare tumour which they removed some of i asked the surgoen last week how big it was they removed ,he said it was as bigas a chickens egg,he said it was big considering where it was. the restof tumour remaining is on my jugulare blub which the surgoen said is to dangerous to operate on,the only problem i have at the moment is taste my taste buds are not back to normal and also my ear is still numb i was told that its all normal. im just trying to takeone step at a time thats all you can do really ..i never thought i could actuuly do all the things i had done in the last year ..mri scans–ct scans–blood tests– angiogrames– embloisation–best of luck regards tina hewitt..

  80. hi karen just wondering if you have eard from addenbrooks hospital yet about your glomus jugulare tumour you have ..hope allok..just had my 2nd check up at addenbrooks ,hearing is alot better and waiting on appointment to have another mri scan which i really hate buy ive got to have it done.. hope all is ok with you tina hewitt.

  81. I had my Gamma Knife surgery and all is well just tired…Still want to persue second and third opinions. I live in CT. Can anyone share any Hospitals or DRS that specialize in this rare tumor?

    Thanks

  82. lori i had my operation at addenbrookes cambridge which is cambridgeshire the ent departmen has a fewsurgoens there which specialize in these rare tumours the surgoen who i see is mr p axon he is a great person and tells you how it is and do notuse long words so you can totally understand him ..he removed mine glomus tumour and got to have radio therphy for 6 weeks monday to friday later in september time ..he specilize in rear tumours .mine was the first one in 20 years he did ,,i was only in hospital 2 days and recovering nicely at home ,had 2 check ups with all is well and ok..cannot prise himmore them i had ,regards tina hewitt you said you live in ct were is that.

  83. Hi Lori.
    You live in connecitut correct? I suggest that maybe you go to Boston where the teaching hospitals are??? I went to Rush in Chicago to Dr. Wiet. It is a teaching hospital and he really new what he was doing and specializes in things to do with the neck and head. I just believe in these hospitals because they are up with all of the lastest procedures. I must add that I was expecting to loose my hearing but he decided once he looked at my mri and cat that he would try this new technique and it worked, I have total hearing in my ear! The tumor had actually been blocking some of it and I had lost 20% before. It is a miracle!!!
    I do admit that there were several residents on my case with the doctors but they were wonderful and I felt like this is a rare thing let them learn as much as possible so they can help the next one. And they were awesome to me as well!
    I hope that helps some! PS my brother in law is a surgeon and he went to TUFTS to get his specialization. This is one of the reasons why I recommend the teaching hospitals. I hope that helps and blessings. Marilyn

  84. I had the same surgery in 2009 at UT Southwestern in Dallas, TX. Dr Peter Roland was my savior. Would like to correspond with others who have had or will be having this same surgery since is it so very uncommon. My surgery was almost exactly like the others discussed here. Very hard to get over so much anesthesia. My tumor was also much larger than they had expected but I also recovered much better than they expected. Having trouble now with hoarseness and hearing and have appointment with ENT next week. Praying it is a simple fix.

  85. Hello all im so glad i found this site! My whole story begin like alot of yours, first diagnosed with an ear infection only to find it was a glomus tumor I am 33 years old. I had gamma knife done in March 2010 which didnt help any. The tumor had taken partial hearing on the left side and had wrapped around my cranial nerves from the 5th to the 12th so I had ALL THE SYMPTOMS, dizzness dysphagia, headaches, etc. I opted for surgery which happened in Sept of 2010 but they could not take all because some had reached my brain stem, I was a 13 hour surgery! Afterwards I felt fine but whats scaring me know is that all my symptoms are coming back I go next week for my MRI and back to the neurologist. I been in and out of work because of the symptoms and just thinking of taking full disability. Has anyone else had issues with returning fully back to normal? I pray for all the best in your recovery….. Monica

  86. monicafingers crossed for you when you have mri and for the results.i had op this may just gone op went very well coudnt take it all away cause it was on my jugulare bulb very dangerous to op on…got to have another mri scan and then have a mask made and then have 6 weeks 30 sessions of radio therphy had op at addenbrookes cambridge excellent hospital .the size of tumour that they took away was as big as a egg so it was big really cause of were it is,hoping the radio thrphy will get rid of the rest .fingers crossed.really hopeyours havent started to grow back.what symtoms have you got to think they are comig back then..please let me know how you get please regads tina hewitt

  87. hi mandy just wondering how you are feeling now.its been 11 weeks since my op to remove glomus jugulare tumour i had a check uplast week went well.had hearing test much inproved in the left ear which is good.surgoen wants anothermri scan to getthe radio therphy right etc which i will be having in october i think for 6 weeks monday to friday ,,the size of tumour was as big as a chickens egg i was told last week he said it was big..they couldnt remove it all cause other was on jugulare bulb which ihave been toldis dangerous to op on..my ear is still feeling a bit numb i was told that normal and also my taste buds are not back to normal yet..so really i am pleased on how it all went..compared to some people mine went very well..fingers crossed it do not grow back again.i was told there is a 50..50 chance it might ..regards tina hewitt

  88. Monica,
    It’s been a year and a half since my diagnosis and a year since treatment finished. In my case Drs wouldn’t operate so had radiation to stop the growth of the tumour. But there was already damage to the cranial nerves. Latest MRI showed that the tumour is stable (have my 4-month follow up with the radiologist next week). But, as a result of damage done, I am still trying to figure out what my ‘new normal’ will be. I have been off work since Dec 2009 (teach in a secondary school) – currently on disability – but trying to get back to work starting in Sept (slow return anticipated). Have complete hearing loss on the right, + there is a weakness in my tongue, have some swallow and eye blink issues. Still dealing with fatigue – think noisy environments and motion contribute to this. Nothing that is huge by itself but they add up and may be a problem in trying to teach. The energy level is very different now. Although my brain is as active as ever it takes me way longer to do things. I’m still learning that it’s okay to slow down and working to accept that I may not be able to return to teaching.

  89. So glad to read other stories from people who went through what I have been goint through. Two years post op in May and now I am having some strange symptoms. Going to see ENT tomorrow but had a hearing test yesterday, very little hearing in left ear, which after surgery was not this bad. The thing that scares me most is my ear was very red on the inside, like an infection, which is how this all started in the first place. Not feeling dizzy or having the pulsating in my ear constantly, just on occasion. I cannot go through another surgery!! Hope for the best tomorow.

  90. When I read the different posts it is somewhat surprising just how different our experiences seem to be. From pre-op symptoms to surgery techniques to post op recovery, many differences exist. It is obvious that we all need to get as much information as is available to make good educated decisions about treatment and care. Please know that is ok to get second and sometimes third opinions about treatment. Seek out doctors who are well versed and very successful in the treatment of glomus tumors. That may mean traveling a ways from your home, but may be key to successful treatment.

  91. Beverly,
    so sorry to hear that things are not going well for you! I will keep you in my thoughts and praying that you get good results tomorrow!
    Marilyn

  92. Pretty good news at Dr appointment yesterday. Hopefully it is only fluid in my ear. Having an MRI Monday to make sure it is not the tumor coming back and then we can work on getting a tube in my ear for drainage. I had been feeling like my ear was sunken in on the left and found out the fat pad they put in two years ago has been absorbed and indeed my ear is a little sunken in and will always be. Kinda strange but good to know it is normal.

  93. Beverly,
    We are not strange. my Dr. calls it special. That does sound so much nicer. I am begining to think that besides ya’ll I am the only normal person I know. I do hope that the MRI goes well. I have probably spent enough on those tests by now to have bought my own personal one. the worst thing about that machine is the noise if by luck you do not have a headache when you go in boy you do when you leave. keep up your spirits as best you can. Keep a sense of humor you have to. You do realize that having these stupid things are about as rare as winning the lottery. I guess I should buy a ticket due to the fact that I am dealing with my third one what do you think? Not sure if it would be the same but mine did not drain or have any fluid when I was dianosed with my 2nd one only ear pain. I still have the ear ache due to the vegas nerve that was damaged during my 2nd surgery. My biggest problem right now with this 3rd one is the headaches, constant 24/7. I have 4 nerves completely gone but the headaches are the worst and the fatigue. I just want you to know that someone out there understands and thinks of you and wishes you the best.

    Linda

  94. just read your message on here you said its your 3rd tumour,does that mean you had radio therhy for weeks on end ,then to find it has growed back or didnt the radio therphy kill the remainer of the tumour or did they take it all away in operations and it just grow back….you see i had glomus jugulare tumour taken away apart from little which they couldnt remove cause of where itiis so i have to have radio therphy sometime in october ,had some removed in may this year..addenbrookes excellent hospital and the 4 surgeons involed in op were brillent .size of tumourbig as a chickens egg ..regards tina hewitt

  95. Tina,
    The 1st one was removed completely. It grew back 5 years later and the second surgery was so dangerous they tried radiation. I took 30 treatments and thing kept growing so I still ended up having a second surgery 23 hours total. I knew after the 2nd one if the stubborn grew back again there was nothing else to do so now we just monitor its size and this last check up in July I told my Dr. no more scans I don’t need to know if it’s growing. Been battling this thing since 1997. I do hope that yours responds better than mine. The Drs that I had for the second surgery were in Nashville, Tn about 7 hours from where I live. My dr who did the first surgery said they were the best for me. They combined a team from Vanderbilt and Baptist hospital there to do the surgery. I had 7 Dr’s total. Wonderful there It’s just that this thing is so rare and so stubborn will not stay away. My chances of winning the lottery are better than this thing returning for the third time guess I need to buy a ticket. All you can do is adjust to the nerve damage and the changes in your life and go on. I am so blessed to have survived the 2nd surgery so I ok with this thing. If my Dr. could just find something for my headaches. Nothing seems to work. Wishing you the best and in my thoughts.

  96. linda thanks for your message you poor thing you have been though the wars havent you .the head aches must be horrid .i had head aches the last few months before operation .but you have them all the time not nice.. take care linda ..regards tina hewitt

  97. Tina,
    Thanks for your thoughts. It’s not a nice tumor to deal with but I know it could be worse. I am blessed to be as well as I am I do hope that everything go well with you and I will keep in touch to see how you are doing. Just hold your head up, keep laughing and keep talking to people who understand this darn thing. This has helped more than you know.
    Linda

  98. Hi Mandy, I was recently disgnosed with a glomus jugulare tumor. I have had symptoms for quite sometime. It is now so large in size that the Drs. have stated that it can’t all be removed. I had MRI’s that revealed nothing wrong. I am a pretty upbeat person with great faith in God. I am nervous about the surgery but I believe that I can bear it with the strength that God has provided. I have been told that I will have permanent hearing loss, facial paralysis, loss of sense of taste, problem swallowing. WOW! However I have been told that it must be removed. Now you want to hear a real downer. My daughter recently started experiencing the same symptoms. Upon an exam her doctor discovered redness in same ear as mine. I haven’t had my surgery as yet so need I to say the how much strength is needed as we await her diagnosis. I assured her that if God has allowed this to be true that surely he has made a decision for provision for me and for her girls. We see this a time of true spiritual challenge and we are both believers who trust our lives in the hands of our almighty God. If you are a believer agree with us spiritually that God has this situation under his control. Thanks for sharing your story and photogs. CAROL

  99. Carolyn,
    Sorry to hear of the challenges facing you and possibly your daughter. Your diagnosis is pretty much identical to mine. I had surgery in March and am adjusting to the changes in my life. Call upon your prayer warriors to surround and cover you in prayer. That will make all the difference.

    God Bless,
    Dan

  100. hi carolyn just read your message .i had glomus juguare tumour had most of it removed in may this year at addenbrookes hospital cambridge excellent surgeon..i dont know where you live but thats the hospital to go.as i said couldnt remove all .they did remove some of it ,it was as big as a egg the remaining tumourbit i have tohave radio therphy for 6 weeks monday to friday…starting october..mind started with a red and blue ear right down behind the ear drum and like a heart beating in my ear..and ear ache..iwas told my my family doctors that i had ear infection this went on for 6 months i kept going back and forewards to doctors in the end they sent me to the ent clinic then i had to be sent to addenbrooks hospital cause they deal with that sort of thing rare tumours..let me know how you get on at hospital and your daughter hopefully she will be ok and just have ear infection fingers crossed on that ..how old is your daughter then…it seems to be mostly females who get this in the left hear most people and they say it startsof with a red / blue ear right down past ear drum.my family doctor do not now nothing about these rare tumours so when i seehim other day .he sat there and i told him things that he didnt know.its surprising how if you have something wrong with you how much you learn about it..never in a million years would i have said in 2010 and 2011 i would know about rare tumours ..you take care now and please let me know how you and daughter gets on ..regards tina hewitt ps forgot to say operation i had took 7 hours and the symtons i had are 70 per cent gone.and thwere wasnt any nerve damage at all..so im just waiting to have another mri scan 15th september and then after that have mask made for wearing when haveing radio therohy.then i will deed another mri scan ,then few check ups followed by hopefully a last mri scan 2 years later in total its a 3 year just over treatment ..have been told there is a possabbilaty that it could grow back ,but i will cross that bridge so to speak when /if it comes…but i hope not…take care…

  101. to all you out there whos got a tumour glomus jugulare .i was diagnoised with one hell of a rare tumour last year,i was very frighten not nowing what i will have to go though.i was told in the first place that i will deed a ct scan that was not enough information on that for then so i had to have a mri scan bot was that enough the tumour was as big as a egg and was in a dangerous place..i then had to have a follow up to the scan results and then had to wait little while to have a embolization which lasted for 2 hours the dat before my operation i had to keep awake for that which i must say wasnt very nice at all but i had to have it done..they cut your topof lrg and then cut vein then put this very thin wire though your vein up to your tumour you cannot feel a thing at all honest you cant..its the laying still i hated then they fired little bits of glue type thing though the thin wire and surrounded the tumour the best they could..as i said its a long and slow operation to go though awake ,i did ask if i could be put to sleepthey said no you have to be awake for that .anyway 2 hours later all done ..i had to kay flat and not get up for 4 hours afterwards for the vein to heel up and leg cause they do not sitch it up..i was in hospital alday for that so i will warn you so take a book or something to i took my ds and some games to do and my husbard stayed with me so that passed quite quickly really..i left hospiyal and i had to be back the next day for my 7 hour operation i arrived at hospital still tired from the day before and not sleeping that night due to worry and everything..i went down for operation at 9 am in morning and come round at 6 pm that evening.all ican say is i had a big ache which lasted one day thats all ,,i had the operation on the 18th may this year i wasnt in hospital very long at all they were very pleased at me i was walking eating cheating smileing all that they wanted to see..i did suffer with quite alot of dizzyness but that was all normal ,as i said i had op 18th may i was home on the 20th may so that was excellent really ..when i got home i wasnt aloud to do much for 5/6 weeks or drive but tobe honest you couldny really if i tryed..anyway ive had 3 month check up all good hearing is back to normal and taste buds are gettibg there and the numbness of the ear not quite there yet but all that is normal..mynext step is another mri scan cause they coudlnt take it all away..it was to dangerous to do that.soi have to have a mask made after mri ready to wear when i have 6 weeks mondayto friday radio therphy ..i had operation and all treatment at addenbrookes hospital under the care of mr p axonexcellent surgeon thats all i can say really….so i have to keep my fingers crossed that it do not grow back ,cause i have been told there is a chance that it can…this tumour has made me stop and look at things in a different way and also the things i have learnt all i can say not in a million years i would have thought that this will ever happen to me ….one in 1.4 million people get these tumours i have been told ..i was the first one in 20 years at addenbrookes hospital to have got one..all i could say to that is trust me..and why me but im still alive to tell mystory to others out there not to worryall will be ok …take care regards tina hewitt…

  102. Hi, I have just been diagnosed with a glomus jugulare tumour 18th August 2011. I have an appointment this Tuesday to find out what is going to be done about it. I live in New Zealand so I have no idea what sort of experience they have had with this. I have been able to hear my heartbeat in my left ear for at least a year and a half and had mentioned it a couple of times to different Drs but no one seamed worried about it and it didn’t bother me much (except at night when it seamed really loud but I got used to it). Early May this year I developed and red itchy rash all over my body especially my face where it was swollen red welts. I got some prednisone for this and it went away within a week but while I was at the drs I asked if it was normal to hear your heartbeat in your ear so he had a look in and said it was a bit red. I went back a week later it was still red, i was getting feverish in afternoons and I ended up having 4 courses of antibiotics which made no difference. Also I was feeling dizzy, nauseous and had pulsitile tinnitus. went to ent specialist 4 weeks later and he refered me to his clinic at hospital (two weeks later) where it was confirmed i had hearing loss on one side and one consultant said he could see a reddish, bluish mass and I was booked in for a MRI. Then I was given results on 18th and he said it was much bigger than he first thought, that what he could see in ear was only the tip of the iceberg. It looks about the size of a hens egg and is displacing my jugular and has pushed up into my brain. He didn’t say much more as we must have been giving him the ” possum in the headlights” stare. Before I received my diagnosis I beginning to think I was going mad. I was very lucky to stumble upon this website tonight and I have jotted down alot of questions to ask on Tuesday. My symptoms now are pulsitile tinnitus, dizziness, tiredness and feeling like I cant breathe properly some nights once I put my head down. I do feel a bit emotionally numb and I havent quite got my head around this although I dont feel so alone now. Thank you very much!!

  103. Hi. I live in New Zealand and am 41. I have just been diagnosed with a globus jugulare tumour. I am fortunate that my ENT specialist has been involved with two other cases in the past although my is larger and is pushing into the brain. I will be going to Auckland to have it removed soon and one of my doctors has removed them before. I still feel quite stunned by it all but was pleased to find this blogg. I have a strong faith in God and I know he will get me and my family through. Thank you Mandy xxx

  104. Anyone out there in Houston Texas with a glomus jugular ? I was recently diagnosed and will be going to md Anderson for my surgery.

  105. Just had my 4 month checkup with the radiologister (gj tumour that was deemed too large and ‘insidious’ to operate on). Things seem to be going okay but…. will soon have another scan (9 months since the last one). Recently, have been having more headaches – does anyone else suffer from headaches and if so, how do you treat them?

  106. hello liz glad to hear you are doing ok.you said about headaches ,yes i suffer with them but not so bad now they have taken some of tumour away i take iburphen tablets.it helps a little but dont take it all away…go and see hospital or your gp to see if there is anything they can give you for pain ,you should not have to suffer,,tina

  107. Tina,
    Wow thank you for putting this site together. I as well have a gj and boy what a shocker it is to get that kind of rare diagnosis. I live in Houston Texas and after consulting three different doctors, I have chosen to work with a team at md Anderson. I work as a financial advisor so I talk to people all day long for a living. I sure hope I will be able to continue with my 15 year long career after this is over??!! I am 52 years old and felt a whooshing in my ear, that was my only initial symptom, my Ent could not find anything so he referred me for an MRI just in case. Thank goodness I went and got the MRI done cuz I thought that all I had was a bad ear infection……well anyway it has been interesting reading all the stories in your blog. Thank you for the postings!

  108. Well, I haven’t posted for a while. I’m scheduled for my surgery on October 4, 2011. It has been a challenging journey. I have a great sense of humor and unfailing faith in God. I’m not looking forward to the life changes and pain many of you have had and are still experiencing. Thank you so very much for sharing your experiences. I know that it will not be easy but it will be doable( is that a word)? Let’s all stay positive and keep each other in our prayers.. carol

  109. hello carolyn you will be ok.i had operation in may ,yes i had a head ache for 2 days afterwards but thats all..the tumour they removed was as big as a egg..only had a 6 inch cut behind left ear so cannot notice it,,my ear is still bit numb as its wearing of my ear is still sore ..but thats all normally,,the nosie i had in my eas all day all night has 70 per cent gone..and also there is no nerve damage,,the surgeon very pleased with how its gone,,ive got to have a mri scan this thursday not looking foreward to yet another one of them..then i have mask made to wear on face ,,then ive got to have 6 weeks radio therphy monday to friday…so this year as you can see is taken up …so you see really there isnt anything to worry about..do you have to have a embloization the day before operation to stop loseing to much blood,,,it took 2 hours to do the day b4 operation then operation took 6 and half hours to do as i said all went fine you will be fine…please let me know how u get on ..really would love to keep in touch about how it went ok,,,all will be ok for you i know it….take care stay positive regards tina hewitt

  110. Carolyn,
    I just read your note about your upcoming surgery and thought I would let you know how I made out as my experience was different from most of the comments here. I was diagnosed May 2010 and had surgery on Sept. 24 & 25 2010 so I am coming up on 1 year. I had an embolization that took 3 hours on the 24th of Sept and surgery that took 11 hours on the 25th of Sept. The only symptom I had before my diagnoses was loss of hearing in my right ear. I have had no problems since my surgery like some of the others have had. I went back to work after 10 weeks feeling very well. I had little brusing after surgery and no problems with eating or drinking. After surgery I waited 6 months and then had cyberknife to kill the remaining tissue that was left from the surgery as the could not get all of the tumor without nerve damage. After cyberknife I lost a little bit of hair but other than that I have been fine. I just wanted you io know this because your experience could be completely different from the others as mine has been. Good luck and keep up the faith as that is what I did.

  111. I was diagnosed with glomus jugulare tumour in October 1991. Underwent surgey in December of that year but it was abandoned after many hours due to the Doctor’s uncertainty about being able to complete the process satisfactorily. Had a spot of bother whilst in intensive care in that the would blew out and I had to be taken back to surgery to stem a life-threatening bleed. Got over it and started getting myself fit for more surgery.

    15 months later, unterwent more surgery to remove the tumour. This was successful but I do have some nerve morbidity to deal with. Lost my facial nerve (graft partly successful), glosso-pharangeal nerve and some damage to the accessory nerve. Have some paralysis in the right side of my face, cannot blink, cannot swallow properly, speech is affected and right arm is not as mobile as it used to be.

    All up, not a bad result considering the alternative. It turned my life around and I went back to Univeresity, obtained a Master’s degree and three diplomas, saw both daughters married, have 4 beautiful grandchildren and a pretty good life now.

    Last surgery was in 1994 and I’ve been symptom free since then.

  112. Thanks so much for your encouraging comments Lisa. I am doing quite well waiting for the surgical procedure to take place. I have an excellent team of doctors who believe that I will do quite well. I am an avid exerciser which they tell me is in my favor.:) This is truly not something that I am looking forward to taking place. Did you have paralysis of facial muscles? I’m scheduled for embolization on Monday October 3rd and the actual resection on Tuesday October 4th. My faith in God has kept me at peace. I trust his decision in this.

  113. hello carolyn guthrie so glad you will be having your operation on tuesday and embolization on monday good luck with all of it.i had mine in may embolization and op the following day .embolization took 2 hours to do i was more frighten about that then the 7 hour op to be honest cause you are asleep for the operation..dont now nothing about it..im still waiting on having mask made to wear for radio thephy 6 weeks of radio therphy which i will find very hard to do ,but its got to be done,i had my op on a wendesday and i was home again by friday dinner time.didnt hardly have any hair shaved of and the scare is 6/7 inches long behind ear so you cannot see it..i still have a numbness in the top half of my ear and taste buds are not back to normal but all this is normal even after 4 months .its because the nerves have been damaged and they are heeling and didnt like it..there hasnt been no damage to facial nerves or anything and my hearing is back to normal in my left ear…the tumour they remove was as big as a egg i was told so it was big because where it was.they couldnt remove it all so thats what the radio therphy is for to shrink it or kill it ..you will be fine try to go in happy and smiling and then you will come out smiling thinking thankgoodness thats over ..thats what i did and it worked ,,had my op etc at addenbrooks cambridge excellent hospital…YOU WILL BE FINE HONEST REGARDS TINA

  114. Carolyn, I did not have any facial paralysis at all. The only problem I had through the whole ordeal was that my right eye would not close so we patched it each night before bed and put drops in it and within a couple of weeks it was back to normal. Other than that I have had no problems with anything at all. Hope yours goes just as well as mine did.

  115. Blessings to you Carolyn I pray all goes well….I am scheduled for my embolization on October 24 with surgery following on the 25th. I am having my surgery done by a team at md Anderson hospital in Houston Texas. It’s amazing how we come from all over the globe with this illness. I have been exercising as well but I think really the surgeons hands will determine the outcome and the grace of God. Blessings to all on this blog. I will post after my surgery to let y’all know the outcome. Like everyone else, wrapping your head around this kind of diagnosis is so frightening.

  116. I have recently been diagnosed with Glomus Jugular tumour.
    I have been to two specialists and neither had anything positive to say re removing the tumour and at this stage have refused to do so.
    Anyone in Australia been diagnosed with this?

  117. hello candi o i dont live in australia i had a glomus jugular tumour, coundnt remove it all having radio therphy ,,,,i had mine at cambridge addenbrooks uk ..excellent hospital hope all goes well…

  118. Hi Candi O
    I have had a gjt for around 7 years now, only diagnosed Jan 2010. I am interested to know what your specialists have said on the negative side of having this operation. The reason being I don’t want to have surgery by someone not experienced and I have found the problem with this tumour is because its rare most surgeons have only done maybe one operation or some not ever and the only knowledge they have is from a text book! I have had surgery over the years for various things with good results with experienced surgeons, not so good with those that haven’t done the surgery before. I only have the whooshing in my ear and slight dizziness so don’t want more symptons after surgery. I had an op last January to remove what they throught was a polyps, but was in fact the tumour. From this operation I now have very good hearing again, even though they only removed a little via the ear canal. Look forward to your reply

  119. Good Morning Candi,
    My recommendation would be to find a surgical team well versed in removing Glomus Tumors. There were three surgeons (1 Head and Neck and 2 Neurosurgeons) who performed my operation and collectively they had done many.

  120. @ Karen
    My heart goes out to you. My Glomus Tumor wasn’t found until surgery was performed on me for what was thought to be Cholesteatoma and an ear polyp. Please be advised it will have to be your decision on what your treatment options will be. But the tumor should not be ignored because the bigger they get the more dangerous the tumor is to remove and the tumor can cause a lot of damage to its surrounding areas such as the brain.
    Dan is right there are doctors out there to help. You might have to travel quite a distance to get assistance but they are experienced doctors well versed in Glomus Tumors out there. There is usually a team of surgeons involved. In my case, I had a neuroradiologist and, a neurosurgeon who assisted with the embolization of the tumor; four days later a Neutrologist(an Otolarynlogist surgeon who specializes in head and neck surgeon they also work very close to the skull and brain) removed the tumor.
    Go to the doctor’s and/or hospital website for the department of Otolarynlogy. The website will tell you who specializes in Glomus Tumors and its nastier cousin Acoustic Neuroma. This is the surgeon you want. Don’t expect, however for any of these surgeons to do hundreds of these type of operations a year; since this tumor is so rare the majority of good surgeons only see about 6-8 cases a year. But they are well versed in the tumors. My surgeon was kind of a Glomus Tumor nerd– he lives and breathes any information about Glomus Tumors. Damn good surgeon too. Even though he has done it for me yet because my surgery was way too long a complicated, he has restored hearing to those who have lost hearing due to these tumors. Most other doctors only promised me to fit me with a hearing aid. I went through a lot to get this guy. I have been to or corresponded with just about every major hospital on the East Coast of the United States. Some doctors I didn’t like, some doctors I disagreed on my treatment options, and some doctors seem to not have time for me to explain this rare tumor and my options.
    As for side effects of the surgery there are plenty. But, it is just like any type of surgery which has risks. There could be nerve damage either from the tumor itself or the surgery that may cause facial paralysis. There is also a possibility of stroke. Even if the tumor is removed there is a chance that it may come back. Some tumors may be so far involved that you might need a combination of radiotherapy and surgery to successfully treat it. With all the surgical side effects it is still better to get the tumor treated by either radiotherapy or surgery.
    Prepare. Prepare. Prepare yourself for surgery if you decide that route. First start researching the doctors. Try to get as much information you can about their surgical histories and their Glomus Tumor surgical histories. If you are not involved in some type of exercise or eating healthy please start before your surgery. Surgeries to remove these tumors are like marathon; it is not unusual for a person to under the knife for anywhere from 4-22 hours. The healthier lifestyle will help with your recovery. Plus also take an evaluation of your mental health. The downside of my experience with this tumor I ended up with having to deal with PTSD.

  121. Hi Lilli Many thanks for your reply. I have been searching for around 18 months now, but my problem is that I live in Cyprus, a tiny island in the med which only has a small population of around 800,000 and there are no surgeons here for this operation. I am originally from England and that is where I have been looking, but so far no-one has impressed me at all. One clinic did suggest that cyber knife was a better option for me with lower risks but @ the cost of around £20,000 – I will have to leave that one lol! I will keep on searching. Thank you again, I really appreciate your advice.

  122. hi karen just read your message on here.it says you live in cyprus.. and there are no surgeons there to do the operation…i had mine operation to remove gj tumour in mat this year i had mine at cambridge addenbrooks hospital.there are surgeons there who deal with that sort of rare tumours i had a surgeon called mr p axon all i can say is brillent man took tumour out by cuttung behind my ear about 5/6 inch scare is all i have and cannot be seen.i had very little hair shaved of as well ..i didnt have any damage to nerves or facail nerves or swollowing which i could have done.they couldnt remove it all of tumour cause the rest is on my jugulare blub to dangerous so im waiting on having amask made for me to wear when i start having my radio thephy for 6 weeks each day at addenbrooks hospital ,,they are a very good hospital cannot fault them..dont know if you will be able to go there as you live in cyprus…hope you do get sorted the size of tumour they removed was the size of a egg i was told so yes it was big because were it was..hope all goes ok for you,,,ps let us know how u get on..ps i had op may this year i was only in hospital 2 days then home again the operation yes i know is a long one mine took 6 hours and a half ,to do ..but you dont know nothing about it seems only like you have been asleep for 5 minutes hopeing you have it done..the tumour really has to come out it will only get bigger and cause problems like mine..hearing headaches noise will run the side of tumour and also the eye will start to run ,my hearing is back to normal now in that ear.were i only had about 30 per cent hearing b4 operation….YOU WILL BE FINE KAREN YOU MUST HAVE IT REMOVED TAKE CARE TINA ….

  123. Hi! I have just been to see my surgeon in Auckland New Zealand 6 Oct. He deals with 1 or 2 per year and has operated on about 30 in his career. However mine is the largest he has seen and it goes a fair way into my brain. He says I will probably need two ops, 1 in neck 1 in brain. He is talking about sacrificing my hearing ie.removing eardrum middle ear inner ear, on left side. From what I have been reading on this site and seen on the net I think this seems a bit of an overkill. Did anyone else have to have this done? He said I should be more concerned about wether I can still swallow or not! I am also looking into cyberknife. Does anyone have any info on this? He thinks the op will not be till next year so I have some time to do some research. There was one real positive from the meeting. I was getting scared because recently I’ve been finding breathing uncomfortable when I lie down at night to sleep. The surgeon noticed my thyroid gland was swollen ( whole lower half of neck!) no one else had noticed not even me! This is good news as this can b fixed with medication which should give me back my energy and maybe lose weight (yay!). I have been very fortunate as my only other symptoms from the gj has been tinnitus and dizziness – no pain at all. I have a strong faith God and he will get me and my family through.

  124. whilst most of the replies say ‘do not ignore the tumor’ and ‘you must have it removed’ both the surgeons I have seen have said the complete opposite.
    They refuse to remove the tumor due to the huge risks and complications ie complete loss of hearing, paralysis of facial muscles, damage to voice box and trauma to throat and neck muscles including not being able to swallow and having to have a tracheotomy and intense rehabilitation to learn to swallow again, and limited neck and shoulder movement.
    The immediate plan is to monitor the tumor. MRI every twelve months.

  125. Talei,
    I have had done what you are talking about. My surgeon removed my ear drum, inner ear and canal when I had surgery last year. I was more than willing to sacrafice my hearing so that I had no other more serious side effects. My surgery was 11 hours and the doctor said it would have been worse if he had tried to put all of the ear back together. I still have hearing on my left side but the ear on my right side has what looks like a belly button inside. He took fat from my stomach and stuffed in the ear canal and stitched it up. Other than the loss of hearing I have had no other problems. I waited 6 months after surgery and then had cyberknife to (burn) the rest of the tumor that could not be removed. That was in March of this year and I just went back for a check up this past week and the radiologist said things look fantastic and they are very pleased with the results of the cyberknife combined with surgery. He said that is what they have been doing with all of their patients and everyone has responsed well. I am also 41 years old and opted for the surgery because I would rather have it now while I am young and can heal than if I had to have it later in life and have additional complications. I was thouroughly checked though before surgery to make sure my heart, blood pressure and all other things were in good order. I wish you luck in trying to decide what to do. It was not an easy decision for me either but I am very happy that I did what I did.

  126. At the time of my diagnosis I was informed of my options and the probable outcomes. I guess I never really felt there were viable options. Surgery to remove the tumor seemed inevitable. It has been seven months since my surgery and I have experienced pretty much exactly what I was told to expect. I too have lost my inner ear and hearing on the left side. My voice remains weak despite two surgeries and three injections to improve muscle tone and center my paralyzed vocal cord. Swallowing also remains difficult. I have lost 71 pounds over the past seven months. Despite all of that everyone thinks I am doing remarkably well. Overall, I think I am also. I have been back to work for about four months. Things are improving; my left side facial paralysis is slowly resolving and I nearly have my smile back. This has been quite the ride; I still believe the best is yet to come.

  127. I have missed conversing with you guys have been gone due to my husband having surgery. I hope this message finds you well. I as you may remember have my 3rd tumor. No more surgery is possible. Radiation been there done that to no avail. But we have to hang in there and know that someone is looking after us. Everyone speaks of the “side effects” of the tumor. I know they are horrible but the alternative is not that great so we have to hang in there. I have an implant so that I can speak because my vocal cord is paralysed, I can’t hear out of my right ear, my right arm will not raise, I have the facial paralysis but I try and it doesn’t always work to remember the odds that I beat. I think I should buy a lottery ticket afterall this thing has tried to be me for the past 14 years but I’m still here STILL KICKING EVEN IF THE 3RD ONE IS TRYING TO GET THE BEST OF ME I WILL NOT GIVE UP OR GIVE IN. PLEASE KEEP THESE THOUGHTS IN MIND AS YOU GO THROUGH YOUR OWN STRUGGLES WITH THIS THING.

  128. Candi,

    My doctors, although they mentioned surgery at my very first visit, quickly took it off the table as an option when more scans were done. They felt radiation would be the best option for me due to the signficant risks involved with surgery given the size and location of my tumour. Radiation seems to have stopped the growth and symptons have stabilized – continue to see my radiologist and ENT every 4 months and have an MRI every 9-12 months. My ENT says that I am a ‘lifer’. I returned to work in Sept (off since Dec 2009) but on a limited basis and doubt that I will ever return on a fulltime basis – just don’t have the energy as my brain works to deal with the vestibular and nerve damage. The tumour continues to be ‘the elephant in the room’.

  129. Talei— try calling the House Ear Clinic in Los angeles California. They will have one of their surgeons talk to you on the phone. You can then send them your films/mri’s/medical records and they will review them and give you a free consultation. They are considerd one of the best in the states. Even if you could not or would not go there for medical treatment, they will give you their opinion of your situation. Look up houseearclinic.com
    I am having my surgery in two weeks at The university of Texas MD A Anderson cancer center. They have done about 8 of these surgeries this year on people from all over the world. Mine is 4cm in size…also, the first two doctors I talked to looked like deer in the headlights when they knew what I had. I think they were scared to death to do such an operation. But, when I talked to the team at MDanderson, they were extremely confident and well versed with my type of tumor. They said the long term effects of radiation are not yet known so on someone my age 52 they did not recommend it……..food for thought good luck with ur search

  130. Hello guys. Thank you once again for this blog. It has been so hard to find people to talk to who have this tumor. The most embarassing thing was when one of my earlier doctors diagnosed me with Cholesteatoma and I joined several C-toma forums only to find out later it was a Glomus Tumor. Awkward for me.

    Update* Yesterday, I had my revision surgery. My embolization and tumor removal took so long that the doctors felt that the revision should be done at a later time. The operation was to accomplish three things: to remove any tumor that might have grown back, to find out the cause of the granulated tissue that was causing me bleeding and drainage, and to improve my hearing plus replace bones that were removed in the previous surgeries. The doctor said it was a successful surgery but I am in a lot pain plus I am unable to speak at this time.

    I have been blessed with a great doctor and the medical team yesterday were much better than my previous hospital stays. I prayed for a good doctor to finally help me after going through 8 of doctors and I was delivered. He is one of the best doctors regardless of speciality that I have ever dealt with. In four weeks time we will see how the hearing part goes. I will keep you guys posted.

  131. Lilly
    Hope this note finds you well. I understand the not being able to speak. I had to have an implant placed beside my right vocal cord about six months after my last surgery due to the paralysis. I can not tell a real difference in the sound only the strength of my voice is different. I hope that yours comes back on it own in time. The doctors would not let me speak for 2 weeks after my surgery. Be patient.

  132. Linda,
    I am interested to hear of your vocal cord treatment. A couple months following surgery to remove my glomus tumor I had surgery to treat my paralyzed cord. The surgeon took a nerve from the unaffected side and used it to innervate and tone up a muscle on the affected side. I was told it would take 6 months to see if it was successful. If not, I should consider an implant. I go back in November for my 6 month check. I guess I don’t know what to expect. My voice is weak and much of the time my throat is sore I suppose due to strain. I am a school principal and losing my voice has been frustrating and disappointing. I have to work pretty hard to be heard. Can you order in a restaurant and be heard? How effective is your voice? I am hopeful that with time my voice may yet improve, I hope.

  133. hi everyone. I don’t know if everyone received my earlier posted comment. Had glomus tumor removed on Oct 4th. 7 1/2 hour procedure. Embolization 3 hours. no problems swallowing, slight paralysis of facial muscles, slight drooping of eye, hearing loss due to closure of outer ear canal. There is some degree left however. Tumor was very large. Surgeons were able to remove most of it. Recovery very pleasing to team. Radiation will be used on section that remains. REamined in ICU DAy one…day two ate solid food and climbed flight of stairs, day three walked alone down hospital corridor, Day 4 went home.
    Today I had stitches removed Dr said all looks good. This is a horrible thing to experience yet it is not unbearable. Cling to your faith and remain as positive as possible. I live in the State of Illinois and My team who I will give their due are Dr. R. Battista, Dr. M. Wiet, and Dr. J. Rejowski. They didn’t sugar coat what I could expect but insured me that no one is the same. I thank my God everytime I think of them.

  134. Does anyone dealing with ‘symptoms’ from the tumour find that they worsen with certain weather conditions? I’m thinking that mine get worse with low pressure systems but get a mixed response from doctors.

  135. Dear Carolyn,
    So glad to read that you are doing so well. I had Dr Weit do my surgery as well and he was awesome! I had paralsis on my face and droopy eye. Issues with swallowing and hoarse voice.
    I am now happy to report that I am doing great! the one thing that dr. Weit promised me was that I would have my smile back by last weekend, my wedding day, and it was fully back! i had the photographer take a close up of me to send to him. he said that would be the best thing would get in the mail! What a sweetheart! I had Dr. Petzzrulle ( I know that is spelled wrong). I have to also give kudos to Rush Staff. They took awesome care of me. With mine they were able to get it all and I go back for an MRI and CAT november the 4th. My voice is still raspy but with children and it is a huge challange to get them to listen to me. I am on my toes all day keeping up with the infants and toddlers. I have to admit that I did appreciate that the didnt sugar coat anthing and he said that what got me better so quickly was my positive. He said that I stayed so friendly and did what I was told to do.
    I was off of work for ten weeks, I made pumpkins for our wedding guests all 200 of them, I didn’t have time to have apity party for myself. the thing that bothered me the most was my hair too he wedding,/the scar covrs it up andnow I dont want to have the honor of Dr. Weits tatoo be hidden. HE saved my life totally.
    Blessings to you carolyn for a speedy recover.
    Marilyn Pecetonica Il

  136. I had a very ‘easy’ case, as far as these tumors go….but YES….I do find that the pressure I feel (even with the tumor totally gone) is relative to the weather.

  137. Hi, to all of you that this new to this. I was diagnosed with this rare tumor MAy of this year and had surgery AUgust 29 2011. They put together one of the best teams at Barnes Jewish Hospital in Saint Louis Missouri. My surgery lasted 16 hours and the tumor the size of a dumbbell. Lot’s of prayers have gone out and have some facial problem as far as palcey, swallowing difficulty, and right hearing loss. This has been a challenge but there’s going to be a true testimony in it all.

  138. Dan,
    Just saw your message and wanted to respond about the implant that I have. Dr. Potts at Piedmont ENT in Winston Salem,NC did my surgery about six months after the last tumor was removed. They had to wait until all of the swelling went down. The implant was put in while was awake but was given as I call them “Happy Drugs”. I had to talk to them to make sure they used the right size. I am very happy with the implant that was used. I understand that it is a type of plastic that pushes my right vocal which is paralysed over to meet my left one. I would not be able to speak in front of a crowd and everyone hear me but the results are wonderful compared to b/4. As for ordering in a restaraunt yes. I just wish my singing was better but it was bad before so no improvement there. Dan I feel the implant would help you greatly in your job and the sore throat does goes away when you don’t have to strain to speak. My voice is a little hoarser than before but my husband says it just sexy. Hope this helps and it is something I would recommend.

  139. This is Dan’s wife Beth. I suggested to Dan that he share some additional details about his glomus tumor experience thinking it might be helpful and he suggested I do it. Dan’s tumor was very large, it went from his inner ear to his brain stem on the left side. The tumor was wrapped around his carotid artery. His surgery was done at Duke University Medical Center and his surgeons were Drs. Allan Friedman, Takanori Fukushima (both neuro), and David Kaylie (ENT). There was also a vascular surgeon in the OR. Dr. Fukushima practices at Duke for 6 months and in his native country Japan for 6 months. We were told glomus tumors, a mass of blood vessels, will continue to grow if they are not completely removed. Thankfully, Dan’s team of surgeons were able to remove all of it during a 10+ hour surgery. We would both recommend this group of surgeons if you live in the SE US. We covet your prayers and offer ours, Dan and Beth

  140. @Liz
    Yes I find that weather conditions made my pain symptoms worse. I live in the Northeastern part of the United States. Last Winter with our abundance of snow and humidity caused me a lot of pain. Plus the cold weather was not any help at all. Before my surgery I adopted an aviator style wool hat. I wore it from Fall to the middle of Spring. I was dubbed the girl in the stupid hat by friends. Rain seems to be the worse though even after the tumor has been removed.
    @Beth Dan’s wife
    Even though I don’t know you guys, family members like you have helped us get through this hellish disease. Thanks for being supportive and for filling us in on the surgery part. It is really jarring on mind and body to be in surgery for so long. I do agree the team at Duke is excellent as well as the team at UNC Chapel Hill. Both hospitals were options for us to go to since we have a great deal of family that live in the area. It also might have been a bit easier since I had a family member going through breast cancer treatment at the same time at Duke. But we opted for something a little closer to home (2 hours away) in NYC. Plus I felt extremely comfortable with my surgeon in NYC and his team. Anyone in the NYC area I would be more than happy to email you my surgeons info if needed.
    @Aaron thank you for building the Facebook page. I hope to make a posting soon with the necklace the children made for me. The necklace says “survivor” and has a zebra printed ribbon on it. I was told zebra print means support for Neuroendocrine tumors which Glomus tumors falling under that category of tumors.

  141. Hope this note finds everyone well. Dan I hope the info on my implant helped. I do not know the doctors at Duke or Carolina even though I live in NC. My dr who did my first surgery was in Winston Salem,NC. The second time he sent me to TN. I had a team from Baptist Hospital and Vanderbilt all in Nashville do the surgery. If you need Doctors in that area I would be glad to send those names. I am so thankful that you out there know how I feel. It is sometimes hard to explain to others because some of the symptoms and side effects are invisible to the naked eye but boy does this thing let me know its there. Thanks for you and prayers also

  142. Having my surgery Tuesday the 25th……the waiting is the hardest part!!!! Was anyone told their tumor could be either a schwannoma or a glomus and that they couldnt tell til they “dug in” so to speak? Actually they check the day before and then determine if they need to embolize or not?? Just wondering…..

  143. Peggy may you be blessed with a successful surgery. I asked my doctors if they were sure that the tumor was a Glomus tumor and not something else like Schwannoma. The neuro responded that there is nothing that looks like a Glomus tumor. The Glomus tumor has a distinct look because of its makeup. I had a MRI, MRI/MRA, CT scan, and Angiogram prior to my Embolization and Surgeries. My road to getting diagnosed was a bit different than some, so I was skeptical of what the doctors were telling me what I had.

  144. Peggy,
    My thoughts and prayers be with you on the 25th. We all have been there done that so we understand the anticipation and the dread. Part of you wants to get it over with and part of you says just stop. I”m sure things will go well and remember I and I am sure others with think of you on that day and remember what it was like. Keep us up to date on how you are .

  145. My glomus tumour surgery has been planned for 2nd week of November. Surgeons have told that there is a great deal of possibility of damage to my facial nerve. Such damage is irrepairable and can cause facial deformation or facial paralysis. Really sad and scared. Can anyone advise whether I should go for it or not? Also, if any expert can comment on probable causes of this tumour, it will be really helpful!!

  146. I had a glomus tumor removed on April 26th in a 12 hour surgery. The doctor said it was the biggest tumor of this kind he had ever seen. It had consumed my ear drum and inner ear. I had to have the surgery because it was really close to my brain stem. The embolism took six hours to do. Recovery is harder than I thought it would be. My balance is off and I still have extreme dizziness. As for the facial nerve damage, my doctor left very small pieces of the tumor so he would not damage the nerves. My tumor had invaded my vocal chords and my swallowing nerve. Speak to your doctor about the possibility of leaving small pieces to save the facial nerve.

  147. Chaitanya,
    I now have my 3rd tumor which is unoperable. my second tumor was removed and I did experience facial , vocal cord,throat and a nerve that goes to my right arm. I too was told the danger of this however if the tumor was allowed to grow larger I would have experienced this and probably worse. I understand being scared. My paralysis is really noticable to me but no on else would notice if I did not tell them unless I am having a bad day. I sometimes have spasms and when I get really tired I can feel my face droop more. Some days are better than others. I just wish they could find a medication to help my headaches. They are now trying a medicine used for epileptic seizures. People God love them they tell me “I wouldn’t take that” but they don’t have to live with this crazy thing everyday. I’m willing to try anything. I am now on the quality vs quanity trip. I hope that you know That you are in my prayers and will checking on you. If you have any questions I am not an expert but I have had this thing for a long time and I have been through the surgery and radiation. the embolization. I have survived even though my doctor who is very straightforward told me it was highly possible I wouldn’t. Good luck and I think it is worth it to have the surgery even with the possible facial nerve damage. I also lost my hearing I have a ear but for decoration only. No function. That too is ok. I’m not sure about leaving some of the tumor because it will keep growing and this thing does react well to radiation. I went through 30 treatments trying to avoid my second surgery and the thing just kept on growing. Something else to think about.

  148. Reply to Candi

    Hi Candi
    I replied via an email but it bounced back.
    I am in Australia and have had two surgeons involved in removing a glomus jugulare tumor.
    The first was Professor William Coman, Wickham Terrace Brisbane (abandoned surgery) and the other Professor Paul Fagan, Darlinghurst Road, Sydney.

    Professor Fagan removed a glomus jugulare tumour from the right side of my noggin in 1994. He advised me against radiation treatment following earlier (1992) unsuccessful surgical attempt at resection and was obviously totally successful as I have had no recurrence.
    I have been left with a partial paralysis of the right side of my face, deafness in the right ear and some loss of mobility of my right arm. Pretty good result though, considering what the alternative was.

    Best regards
    John

  149. Hi Linda,

    Thanks a lot for all your encouraging words. I understand what you must have gone through during those days. As of now, surgery seems to be the better option for me. As far as hearing is concerned, I have already lost it, so not much worried, however only concern was my facial nerve. The thing is, I will be getting operated in India. Medical facilities here are not as advanced as they would be in other more developed parts of the world. I can’t afford to get treated abroad. Anyway,let’s see, almighty have thought something about me. Again, I am really happy that I will be in your prayers.

  150. Hello everyone. I have posted here before back in July or so when I thought I was having surgery but it was canceled. They can’t remove my “large tumor” because earlier in the year when I went to ER I was misdiagnosed that right carotid artery needed to be bypassed as it was around my esaphagus. Well my symptoms never went away because it was discovered three months later that this tumor existed and is very vascular and was causing the problem with my carotid artery. Now the tumor is on the left side and can’t be removed because the right carotid was removed and the left side can’t be embolized or blood flow to brain will stop. So I still continue care through Yale. Great Doctors however, if you get in a car accident and injur your spine you have surgery to repair it and then you probably go to physical therapy. I had gamma knife radiation surgery in August. I realize it takes a long time to see a change, but what about all of my symptoms? Why is no one dealing with these? I feel alone on an island or like I am crazy. I have to call them and tell them things. I have atrofied left trapezius muscle(limited use and alot of pain), my tongue is atrofied on left, facial nerve pain, dizziness, lightheaded, bad balance, left vocal cord damaged, left ear pain, left side headaches, severe dysphagia (Severe!) lost 80 lbs in the last 8 months, pulmonary issues. I know have severe dizziness and am scheduled for new MRI instead of waiting till Feb 2012 because symptoms should be less and aren’t. I want to go for second opinion just to make sure my care is on right track. Anyone know experienced hospital near Connecticut or in CT other than Yale?

  151. @Lori For a second opinion or even third opinion, I would try north of you in Boston(Masschusetts Eye and Ear Infirmary) or just south of you in NYC(NYU, New York-Presbyterian, or Mount Sinai).
    As far as the side effects of the tumors, yes, pre-surgery and post surgery I have had headaches on my right side(my tumor was on the right), ear pain, balance issues, facial numbness, numbness on the right side of my tongue, and my taste buds were disrupted. I have explained this to my doctors and they can’t make any rhyme or reason with it especially the headaches. I was lucky to get the physicians I had to operate on me but my only gripe was the push by the physicians for me to go back to work even though I was not 100%. I believe it was too fast for my return to work. This last time I went to work in a week and a half and that was a big mistake.

  152. Lilly, Thanks for the advice. I know everyone is different but there is no way I can work with these symptoms. This is nuts! I am a person of faith and see myself next year fully healed and alying on a beach in Bora Bora with my husband but as of right now these symptoms are trying to take me down. I called patient relations to request my records be expedited to get second opinion. Would love some relief from it all.

  153. All I can say is Lori is to have faith and keep it strong. Don’t let it get you down becuase if you let it, it will. Keep imagining yourself with your husband in Bora Bora that will help you through. But, it is a constant struggle day by day with pain. Somedays I just am not able to go to work because of the pain. Alternative therapies(meditation, accupuncture, and yoga) have help me a great deal with the pain and other issues I have had by getting this tumor diagnosed.

  154. I so understand how you are feeling. I am going through the same thing – would give anything to wake up and not have pain / discomfort. It’s been almost 2 years since my diagnosis and I can’t believe that I am still dealing with the issues that I am. The following site has some good information about the issues that people have to deal with due to damage to the vestibular – http://www.vestibular.org/. A number of the issues I deal with are from damage to the vestibular by the tumour. I have my next MRI on Tuesday. I’m hoping that the increased headaches, nausea and discomfort (neck, throat, chest) that I have been experiencing recently are not due to tumour growth but due to stress and increased activity. I am attempting to go back to work (I’m currently trying 1 1/2 a day in small group settings – I’m a high school teacher) but unless things change dramatically I will never return full time and never to a regular classroom. I have used yoga and a therapuetic aqua class to keep me going. Now trying Tai Chi for movement and balance. I’m trying to keep positive – and on days when it is a challenge – think about how much worse it could be. I too sometimes question my care – hope to have a discussion with my specialist mid Nov. All the best and hang in there.

  155. Thinking I had swimmer’s ear I wa treated for that for abot 2years Finally saw an ENT who turned green. He gave me two referrals. The first didn’t treat this. A waste of time. The angio and mris confirmed diagnosis, but no one told me there was a two hour delay and I had been medicated. When I had my adrenal, kidney,and bladder scan, the toilet overflowed. What can I say? My team has good credentials and insists they will preserve nerve function. They say they will try not to compromise the nerve but leave any leftover fo radiation. Your stories are scaring me. Are yo from mtropolitan areas with good teaching hospitals? Am scheduled for 11/28-embolization and surgery 11/29. Any thoughts? C

  156. Lilly,Liz,
    I understand all the ‘side effects’ of this thing. I too have the horrible headaches. I still have problems swallowing. I also have trouble speaking at times because my toungue wads up in my mouth. My doctror says it spasms. It’s all very frustrating. The only thing i know to say is we have to hang in there. It’ difficult for people to understand headaches 24/7. speaking with you guys is a form of theraphy for me and I thank you for it. May god look overs us and send a special blessing .

  157. Peggy,
    Today is the 25th and you are in my thoughts. I know this a scary time but you are not alone. I do hope that things go every well and soon you can let us know how you are. Take care

  158. hello peggy its tina here thinking of you today 25th october ,you having operation hope all well,,i know it will.i had operation in may this year still waiting on radio therphy to hopefully shrink/kill rest of tumour they couldnt remove..at least my headaches have gone which is a brillent and the noise is not so bad 24 hours aday… please let us know how it all goes ,,,take care xx

  159. Hi everyone.
    It’s been awhile since I have posted..
    Got a couple of questions for all of you..I am seriously thinking about quittin my job. I work with early childhood kids. I am very frustrated with my voice. I can’t even belt out Twinkle twinkle let alone a story.
    I know that I have come so far with swallowing, paralsis, and voice but I still lose my voice at the end of a sentence.
    I go back to my doctor on Friday and I am hoping that he will be straight forward with me …will it ever return????
    It has been four months..guess I am impatient…
    Thanks
    And Siege what city are you looking for???

  160. Marilyn, hang in there. It might get better. Try not to let it rule you. But, I know the feeling getting frustrated that things aren’t like the used to be.

    Seige, what city are you near? I do find that the larger Metropolian Teaching Hospitals such as NYC and Hopkins are the best in getting these treated. I from a medium size town with 6 hospitals within a 15 mile radius and could not get treated at any of the hospitals near me. I had to travel almost 2 hours from my home to get treatment. It is also common for the tumors to get misdiagnosed countless times.

  161. Hey peeps. i was jsut diagnosed with resticitive lung disease also. Anyone have any of these symptoms. I am wondering if it is related to the heart surgery I had that was a misdiagnosis…so lost 🙁

  162. Hello all! Had my surgery last Tuesday the 25th and thought I would give you a run down thus far:

    Surgery was done at the University of Texas MD Anderson Cancer Center in Houston Texas…. they were impressive from start to finish.
    Monday I was checked in at St. Lukes hospital next door for my angiogram. My team uses the doctor there because of his global expertise, once he got in, he would determine if I had a glomus or a schwannoma tumor…..I would be out either 1-4 hours depending as a glomus must be embolized, a schwannoma does not need to be. My doctors thought it was schwannoma( rarer), but they all show up as shades of grey on the mri so to be sure you must do an angiogram. In my case the tumor was not the vascular glomus type so no embolization needed…that helped a little.
    Next, I got my final MRI before surgery.
    My surgery started the next morning and took 10 hours. Then another MRI after that to make sure they got it all. They don’t seem to be big fans of radiation on people too young, I am 52.
    Well, one week later I am swallowing, talking(very softly)and eating small portions of normal foods. The doctors are estatic with results, i still feel tired and worn out. But I must say I could tell from the get go that they were comfortable and confident that they could help me. I had talked to several other doctors that did not come across with as much confidence. Please make sure you find a strong team to help you. I, as others on this blog, had a neurosurgeon (Franco DeMonte)a otolaryngology (Paul w Gidley) and a throat surgeron(Dr kupfermann). They worked hard and long on me last week and I am sure glad that they did.

  163. Good evening all, I celebrated my one year anniversary yesterday of my surgery and I promised myself that I would check back in with this website on that date, as I have seen many post and I have been very moved by most. To see so many people out there who has gone through what I thought I was going through alone is very touching. Well I must say after one year I am somewhat back to my normal me although I must say the surgery has truly affected me mentally, meaning I worry so much that I will have to go through this again that I sometimes get in an emotional funk, being just 30 and already having two major surgery’s on tumors somewhat alike plays with my mental. I have a 4 year old and I pray that I will be hear to see him become my age. Has anyone found that after their surgery they experience these changes emotionally. I also experience headaches quite often and because of the tumor my swallowing has still been affected and my vocal cord on my left side is paralyzed. I have been offered surgery to correct the problem but after having a 15 hour surgery just a year ago I’m still reluctant to go under anyone’s knife again. I am still very sensative on that side and don’t really like people to touch that side of my neck face or head. I experience cough spells because of the swollow problem which cause the headaches to come even worse. I have great days but some days are just a reminder of what I have been through. I am very greatful to have made it this far but to live in fear that this nightmare is not over is what makes me depressed sometimes. Thanks again for this site and allowing me to see that I am not alone in this fight against this odd tumor.

  164. Arlesia,
    So glad you are back. I know this year has been tough. My surgeries took a toll on me also. As for the swallowing problem and the vocal cord my implant helped both tremendosly. I also understand the coughing headaches. I also am very grateful to be as well as I am but my mind still remembers how hard it was. Now having my 3rd one which is inoperable is both good and bad. I am to a certain degree glad that I don’t have to choose. Probably sounds silly but it is a hard choice to make if you haven’t been through this. Just rember you are not alone.

  165. Chaitanya,
    Just a note to let you know that I am thinking of you. I hope this finds you well. I know it’s tough but hang in there because even the worst side effects do get a little better in time. Take Care

  166. Thanks a lot Linda.
    Your words are always inspiring for all of us. Just to let you know all, my surgery has been postponed for two weeks or so as doctors are still not sure what approach to take for surgery. I have been advised to undergo neuro-vascular angiography to determine how much vascular the tumor is. Depending upon the results, they will conclude whether embolization is required or not. Will keep you all posted.

  167. Hello Everyone. It’s just by chance I found this site. It’s hard to believe that 26 years ago in june 1985, I was at RPA with my gorgeous Mum who was the rirst ever Australian patient to be operated on for her Glomus Jugulare tumor. The Doctors were Dr Fagan, Dr Scrivener and Dr Clifford. We were told that previous patients who had this had to go overseas to have it removed. Mum was the first case in the country and I remember they didn’t even have an Item Number for it for Medicare. She went through the embolization, a 10 hour operation, long scar behind her left hear to her neck, nerve damage, facial palsy etc.. pretty much what you’re all experiencing. Today we get back from Doctors with the news that there may be another tumour there (ct scan result) Mum is 77 and not really wanting to have surgery this time. I can understand that completely. It’s sad that it’s now so common and I too now experience symptoms that Mum had and hope and pray that I nor my children inheret the mutated gene. You are not alone and I can honestly understand how you’re all feeling and I pray for all. What I don’t understand is how are they going to operate when Mum’s left ear has been closed off? I guess I will wait to hear what the specialists say. In the meantime.. you are all in my thoughts and wish you well, a successful operation and a speedy recovery xxxx

  168. Dona,
    Sorry hit wrong key on computer. So sad to hear about your mom. I truly understand her fear. I also have my ear closed off. It is my right one but the doctors told me that did not matter due to the location of the incision. My scar is from the center of my head down and around my ear into my neck. If your mom is as I am there is nothing left in there concerning the ear. If you have read the other posts you will read that I now have my 3rd one and I am only 49. I had my first surgery at the age of 35, 2nd surgery at 42. This crazy thing doesn’t care what age you are I don’t think. If you are having the same symptoms please have it checked. The symptoms only get worse and the larger it grows the more difficult the surgery. My sister also has the symptoms but no tumor thank God so maybe that’s what happening with you. Keep good thoughts about your mother and also yourself. I tell my sister she just has sympathy pains. That makes her laugh and she says enough sympathy is enough.

  169. Chaitanya,
    Thinking of you today. Hope this note finds you well. Have the doctors decided when and how they are doing the surgery? If the embolization must be done it’s not that bad. My doctors say it helps with the surgery but who knows. I know that you just want something done and just want it over. Just remember you are in my thoughts.

  170. @Arlesia
    Congrats on your one year anniversary. I am feeling you as far as the headaches which are very often and mental stress my experience with the tumor has put on me. The doctors just do not have an explaination on the headaches. One specialist said the tumor may have caused dura matter damage and prescribed Topamax. The Topamax and the constant stress I have been under caused incredible bouts of forgetfulness so I was taken off the medication by my Primary Care Doctor. I write about this being the new norm for me. The headaches started about two years ago, and got worse after one of the surgeries I had in December(not the surgery that removed my Glomus).

    The mental toll was great for me. I fear going to the doctor. I have nightmares about before I go. I like my surgeon but it just takes such a toll on me to go to the doctor. Part of the mental issue according to my therapist is that my body is not the same as it was pre surgery and pre glomus tumor. Another issue was I went through 9 doctors so nice and others not so nice before I was diagnosed properly with this tumor. One doctor who insisted I had Cholesteatoma and ear polyps operated on me and found the Glomus during surgery. After the surgery with the doctor who thought I had Cholesteatoma, I went through complete hell at the hospital as I was hooked up to oxygen for two days. My therapist, psychiatrist, and my primary care doctor are helping me get through this. I wish specialists could be more understanding of the patients. It is horrible how they treat their patients. But I am getting there day by day.

    Once again congrats on the one year anniversary. I am currently at my 8 month anniversay.

  171. Lilly,Arlesia
    Congrats to both of you. I too understand the fear of the doctors. Most doctors except my surgeons have never heard of this type of tumor, so sometimes I feel as I am giving a lecture during pre med concerning this thing. Does anyone out there know of anyone who has their 3rd one. Also how did the topamax help or hurt my Dr. is also considering it we can’t seem to find anything to help with the headaches. I also understand the mental aspect but that is something that is so hard to explain to any one because we really look very close to normal except for the paralysis issues. Thanks for being the ones who truly understand

  172. @Linda
    I did read some literature about someone who had a fourth one and decided on not doing anymore surgery or radiation treatments. I am not sure where I read it.

    Not for nothing, the Topamax did help with the pain. I felt “normal” again and didn’t have to spend days in bed nursing my head or worrying about turning my head a certain way that may cause pain. I am not going to down the drug because it has done wonders for those who suffer from migraines and those who suffer from seizures. You may not have any of the side effects such as the memory loss. My sister also works for the company that makes Topamax so she was hoping it would work. I wanted to have it work for me but the consquences as far as the memory loss was too big of a risk for me. It did live up to its nickname Stupamax. I troubleshoot computers and electronic equipment all day. It was difficult for me to do my job being so forgetful. One wrong move such as forgetting a command can severely damage a computer. Another reason why I also insisted to be taken off the Topamax was I didn’t mesh with the neurologist my surgeons had sent me to. The neurologist said you may have dura matter damage from the tumor. He prescribed the Topamax and told me to see him in six months. He then left the room. They call some doctors “cold fish” and he was the coldest of all the fishes I have seen. The only side effect he mention was weight lost which, “most people don’t mind.” When my Primary Care Physician heard all this especially the doctor asking to see me in 6 months she was beyond upset. My PCP prescribes Topamax and said she usually sees the patient one to two months after prescribing the drug since it is a very powerful drug.

    Just make sure you talk extensively with your physicians about the drug. For me natural therapies are helping to take my mind off the pain. I do a lot of meditation and yoga. Yoga has been good because the doctors said I was leaning my head towards the left thus “favoring” the left side as oppose to the right where the tumor was removed. Yoga also helps with the stress levels as well. After 15 doctors(my surgeon who removed my tumor was the 9th but a long story why I have had 15) I am little tired and taking some time off from doctors.

  173. Lilly,
    Thanks for the info on the topamax. I am still debating using it or not. I can not have surgery again so I’m thinking why not. As for the memory loss I have that since my 2nd surgery and it getting even worse as the 3rd one grows. I also understand cold fish doctor had one of those also, also a neurologist. I told my Dr never to send me there again If he treated me as badly again they would be picking up from the floor. He was a rude,pompus _ss. Trying to find doctors who know anything about this tumor is bad enough but to deal with these types makes it even worse. I too am swearing off doctors for a littl while. My mind needs a break.

  174. Wow, just spent another 7 days in hospital with a csf (cerebral spinal fluid) leak. Was laid out flat on my back with a lumbar drain in my spine. Swelling went down and am now home praying that is has stopped. It’s in Gods hands now…….bless us all

  175. Peggy, Double wow!

    I have just been diagnosed with a csf – major headaches and vomiting have led to a loss of 10 pounds since Nov 1. I have had 2 MRI’s in the past week as they try to pinpoint the leak: now at home, mainly in bed as it helps with the headaches, while I await treatment. Was hoping that 1 1/2 years post treatment that things would stabilize! My specialist, too, was a bit surprised by this new challenge. Must have him read the postings on this blog.!!!

  176. Peggy and Liz, I am sorry to hear about what is going on. Please keep the faith. Just rest and I am praying for the best for the both of you. I wish someone could tell me the source of my pain. Right now my Primary Care has me on anti inflammatory drugs which aren’t working. And please Liz, if your specialist could read some of these postings. Doctors really need to know what patients go through with this tumor.

  177. @Carol
    I hope you are okay. I see your post my dear. My greatest wish is that we all didn’t have to go through such a hard time with this tumor. You are right, I call my tumor infamous too. I even named my tumor Monster.

    I have been writing a blog about my trials and tribulations dealing with my Glomus Tumor. If you would like to stop by my address is
    http://iamnotgoingtotellyouhowtoact.wordpress.com/
    Or you can just click on the name Lilly from this site and it will take you there.

  178. Hello everyone,
    I have not posted for awhile but I have been following everyones comments with a great deal of interest. Thank you so much Peggy Bowers for putting me onto the House Ear Clinic. By the Grace of God I was put straight onto Dr Derald Brackmann who asked me to send all my scans and results directly to him. Turns out that he is a world renowned expert and one of his areas of research is skull base tumors. He has sent me his recommendation. Due to the intracranial portion
    affecting my swollowing nerves he has advised me to consider gamma knife radio surgery instead because of the huge deficits complete surgical
    removal would cause. He has even offered to do the procedure himself. I sent his e-mail to my ent surgeon who rang me and said he agrees with everything he says except the gamma knife. He doesn’t think it will do much and also make any surgery afterward much more difficult. I did ask Dr Brackmann about this and he said gj respond well to this – dries up blood supply and they tend to shrink – and it won’t make it difficult for surgery at a later date. He’s had years of experience with this tumor and even sent me a chapter he wrote on glomus tumors, describing the different types, their classifications and surgeries from a text book. (also he was really lovely and kind and caring in our conversations) Has anyone had gamma knife ( similar to cyberknife ) and how successful was it? Right now I am not in any pain, I have lost most of hearing in left ear,tinitus, dizziness and a buildup of mucus in my throat which makes breathing feel difficult at times (due to swallowing nerves being
    affected). As you can imagine I’m facing a dilemma. I am so grateful for this blog Mandy and everyone’s contributions.

  179. Hi Talie and other friends:

    This is my first update since having surgery on November 15th and 16th (Less than 20 days ago). I was given the choice between gamma knife or surgery and after a lot of my own research I chose surgery. I’m glad that I did. Talie, a pole was done asking what people the question: Surgery or Gamma Knife – https://www.facebook.com/pages/Diagnosed-With-Glomus-Tumor-Jugulare/165393860216516 . The consensus from people with or have had a glomus jugular tumor was to go with surgery. I’m not a doctor and other circumstances could make a difference.

    Here’s how my two day 14 hour surgery went – Awesome! I feel really lucky. Only had to spend two days after surgery. Almost no pain or discomfort. My surgeon Dr. Hume from University of Washington Medical Center said 100% of tumor was removed. No need for radiation. No facial paralysis. Didn’t loose my carotid artery. Lastly, the beautiful nurses took very good care of me. I feel lucky, blessed and extremely satisfied with how everything turned out. During surgery two lymph nodes were removed for biopsy because they were enlarged and out of place. The result of the biopsy thankfully was normal.

    In the 30 days before surgery I ran 100 miles – I’m just tooting my own horn. Here’s the link to my Nike+ account where I track my the miles that I run – http://nikerunning.nike.com/nikeos/p/nikeplus/en_US/plus/#//challenges/detail/1635868713/ – It might not have been the best decision to do so much running before surgery because I was pretty dehydrated and they had to give me 20 bags of t-line IV.

    Warm Regards,
    Aaron

  180. Hello everyone, my surgery is now 3 months old. I am doing very well. I have muffled hearing in my right ear. My tumor had eroded some of my bone and a “graft of Fat” had to be removed from my stomach. My face is still numb in some spots and the right ear has no feeling but it itches inside and I can’t scratch it. The taste of something bitter on the side where I had the surgery makes food taste wierd sometimes. My biggest problem now is the the recovery process seems to have reached a plateau. I experience extreme pain in my right shoulder and there are mornings when I can hardly raise it without help and lots of effort. I feel the same way everyday, sort of listless and out of sorts. I tire easily inspite of the fact that I exercise regularly at the fitness club. My surgery took 7 1/2 hours. I was in very little pain, able to come home in three days. Drs. were unable to remove entire tumor a 1×1 inch remains in my brain. My Drs. feel that Gamma knife would not be the most effective. The plan is for me to undergo cyberknife radiation therapy soon. My team of doctors are in Hinsdale Il. I would highly recommend this team. ( Dr. R. Battista, Dr. M. Wiet, Dr. Rejowski). They are a great team who cares about you, your family and your needs. Be blessed everyone, let’s all trust God in this.

  181. Hello all! I am now appx two months post surgery. I was wondering if anyone out there besides Talei has experienced a build up of mucus in the throat?? I feel like I am swimming in it and not sure why. My doctors say allergies, but I’m sure that’s not it. I didnt think to bring it up on this blog until I saw that Talei mentioned that he had the same issues, pre-surgery. Just wondering, ………….

  182. Hi Everyone,

    I’ve been reading your stories over for the last couple weeks…. I was diagnosed with having a Glomus Jugulare tumor on November 18th. I’ve been in an emotional turmoil (as I’m sure you know all about) for the last month. I’ve done a tremendous amount of reading, and I’ve starting talking with various doctors. I’m only 29 years old, and I have a 19 month old daughter (so much to worry about). They say that my tumor is roughly 2cm with an estimated volume of 8-9 cm cubed. So far, every doctor that I’ve talked to has recommended Cyberknife Radiosurgery. The only symptom that I have, right now, is a pulsing in my right ear. I guess my tumor is sitting right against my facial nerve, so they’ve told me that if I go with surgery, it’s highly likely that I’ll walk up with facial paralysis. I live in California (near San Francisco), and I’m a Kaiser patient. So far, I’ve only talked with Kaiser doctors, but I guess they reviewed my case at the Neurology Board Meeting, and not a single Neurosurgeon recommended surgery. They just don’t want to cause anymore damage, if they don’t have to, I guess. I am also going to meet with Dr. Parsa at UCSF and Dr. Harsh at Stanford, as well as talk with a doctor at the House Ear Clinic. I’m trying to get the most information possible before making my decision. Do you have any insight for me? It’s been truly wonderful to read about all of you. You’re inspiring. Thank you!

    Nicole

  183. For Carolyn Guthrie, (and anyone else going through this)
    I had a very successful jugulare tumor removed in May of 2008. The bitter taste in your mouth is normal after surgery. I had more of a metal taste after mine, but I still get it from time to time. My surgery was for eight hours and I couldn’t lift my right arm without horrible pain or at all for about six months. My surgeon said it was because my head was turned the entire time during the surgery. I did some excerises to help out and they worked.
    I was very blessed with two of the best surgeons imaginable. Dr. Henry H. Woo, a cerebrovascular specialist #631-444-1213 and Dr. David Schessel, head and neck, ENT specialist, #631-444-4545. Both doctors had just moved to Long Island and joined Stonybrook University Hospital three months prior to my surgery. Every doctor I have spoken to, including his colleagues say that Dr. Woo is the best in the world in his field. (He travels the world teaching his techniques-the day before my surgery he had just returned from Turkey doing just that.) At the time of my surgery they were building Dr. Woo his own wing of the hospital. Dr. Shessel moved from Georgetown University and heads his department in Stonybrook and is regarded of highly by all. When diagnosed I was told to go to Boston or NY city. They normally sent patients to Tenn. but that Dr. had just retired. (I met that neurosurgeon recently, he resides in Long Island near where I live)
    Originally I went to the dr. with a loud heartbeat in my ear. I would read stories to our then 3 year old and be totally distracted by this sound in my ear, as it would come and go. I sent myself to the ENT, because my then primary doctor said, “yeah it’s a little red in there…still,” after a full treatment of antibiotics. She was actually looking at the bottom of the tumor, NOT an ear infection. My ENT sent me for a CT scan then an MRI and was definitive in his diagnosis. I was devastated when he called me to tell me the results, even though he warned me this is what it could be. It all sounded so dangerous and scary.
    I was in the stroke unit the whole day and overnight after the embolization(took about 2 hours or so to look through my entire brain to check for other tumors-they sometimes come in pairs) with a nurse who stayed in my room and checked my vitals every 30 minutes. I was supposed to to be in the hospital for a week after the 8 hour surgery..(11 to 7).they sent me home the very next morning! I had an embolization to “squash” the tumor. Dr. Woo said the tumor was a “greedy little sucker” but he was able to get 95% of the tumor and Dr. Schessel said it was the first time he had done a surgery with out all the blood! Both doctors were amazed and thankful all went so well. (as was I-haha)
    I awoke from surgery totally alert with five faces staring at me, checking me, etc. I had a moment of nausea but it quickly passed and had no problems with any after effects of the anesthesia. I did have a lot of pain after the anesthesia wore off and needed pain medication over night. I had no problems with the nerves in my face, swallowing, etc. I was warned most patients have a problem with paralysis or palsy (sp) for up to six months afterward or even permanently, some needed a food tube, I had nothing. I was also told because of the embolization I could have a stroke and on the VERY outside, of course, death was possible. (didn’t want to hear that!)
    My temporal bone was completed removed and replaced with titanium mesh. (sp) I had a huge scar like the woman in the photos here, but closer to my ear and the plastic surgeon did a wonderful job and took special care since I wear my hair short and didn’t want me to have any of the scar showing if possible. I have had some instances where my ear feels full, and the hearing feels muted, but when tested my hearing is just as it was before, which was excellent.
    My surgeon said kudos to me sending myself to the ENT and kudos to the ENT who diagnosed me as well, since most doctors just see the red, think it is an infection and don’t do further testing. By the time those patients get to Dr. Schessel the tumor is the size of an orange and most times spreads to the brain, if it wasn’t already there to begin with.
    After the initial diagnosis I lost it, I think I cried for four days straight. The whole thought of surgery and just hearing the word tumor sent me over the edge. I am a Christian so after “losing it” I went to God, hit the bible, listened to sermons on cd endlessly and counted on the promises of God. I am sure I just lost some readers….anyway, from beginning to end God was in control, whether I realized it at the time or not. From getting me to the doctors early before it became to large or problematic for surgery, to bringing my surgeons to NY, to the amazing results of my angiogram, embolization, the surgery, my wonderful nurses, to my quick recovery until now.
    I did go for a second opinion to a very highly recommended head and neck surgeon who had worked at Stonybrook Hospital for 15 years or so. He gave me a very different prognosis, thought he could do the surgery as an outpatient, in about 2- 2 1/2 hrs. Although thrilled with his plan of action I didn’t buy it. And good thing too, because my tumor was so large, it would have never fit through my ear canal as this dr. had planned and I would have had to go through with the surgery I ended up having, only IN EMERGENCY mode, with no embolization, NOT GOOD!
    So everything went according to plan, (God’s plan) and I was also blessed because my best friend since childhood has been a nurse in neurosurgery at Stonybrook University Hospital for over 20 years and was with me every minute, along with my husband. I was even able to resume my job as a dance instructor two weeks later. I didn’t dance or anything of course, but I was able to drive and function normally at that point. Our five children, who were 14,13, 10,9 and 4 were very big helps as well. As scary as the whole thing was, we were honest with them, told them as much as they thought they could handle (age wise of course) and they did wonderfully.
    I hope this encourages anyone going through this right now or in the future. I would suggest a second and third opinion if necessary, traveling to where the best doctors are and getting as much information on the subject as possible. Never be afraid to ask questions and make sure the doctors would treat you just like they would treat their own spouse or mother. After all this is YOUR life they are dealing with, and it is very valuable!
    I hope this is helpful to someone!
    Danielle 🙂

  184. @Nicole
    As far as surgery versus cyberknife versus gamma knife versus watchful waiting, you are going to have be on page with your surgeons. It is your body and you need to be comfortable with your decision on your body but not let a doctor or anyone else pressure you into making a decision. I had pressures from all sides: some members of my family wanted me to get the radiation and be over with it; some doctors recommended radiation treatments; other doctors advised that surgery was best because the radiation doesn’t not get rid of the tumor; while there were other doctors who refused to touch me after a bad surgery I had. When I looked at the options out there for me I chose the surgery because the surgery would remove the tumor plus there would be a chance to restore my hearing which the radiation would not have made it possible. Plus I was told by the oncologist who was going to do the radiation that it could be up to two years for me to feel any pain relief and if they had to operate after the radiation it would be a very difficult surgery. I also went with the surgery because I felt a comfort with the surgeons. After my bad surgery I lost complete faith in the medical community and my surgeons who removed the tumor made me extremely comfortable.

    Continue to get more opinions and hopeful you won’t need nine! Doctor 9 and Doctor 12 were the ones who did my surgery. I would suggest going to a different hospital system because you said you are a Kaiser patient. Nothing against Kaiser, but sometimes it best to have an independent fresh set of eyes to look at your case. I heard House Ear Clinic is good. I wrote Cedars(among the twenty I wrote) in Los Angeles but decided not to be thousands of miles from home. Cedars is known to take on rare cases and high risk patients. They operated on Tionne Watkins who suffered from sickle cell and who also had an Acoustic Neuroma. I decided to stay local, well two hours away from home local. I decided on NYC.

    As far as your emotional turmoil we all have been there some of us have had it worse than others. Unfortunately, for me I had it pretty bad and still continue to. I was diagnosed with Post Traumatic Stress Disorder right after my tumor was removed. If you feel you need help then, please, please seek help. There are plenty of excellent mental health professional that will meet your specific needs. Without my therapist, I think I would be in worse off shape.

    I am praying for you and you will make the right decision for you.

    @Danielle
    I had faith and I tell you over the last two years it was tested. My therapist told me it was a battle over my life. I was to the point of being upset with the world and asking why me? It seemed that I couldn’t get a break with this. But I continued to believe and I was shown the way many times. Feel free to stop by my blog and read the blog entries called N’s Angels. http://iamnotgoingtotellyouhowtoact.wordpress.com/2011/11/20/ns-angels-the-guardian-angel/ These are people who seemed to come out of nowhere and help me through my toughest times. And you are right I told one doctor who was very rude to me, “How would you like another doctor to treat anyone in your family like you have treated me?” I have fired plenty of doctors for give me attitude and when I fired the doctor I called Doctor 6, I specifically told him it was his lack-a-daisy attitude when I kept telling him I was in pain.

  185. Am part of the club. Am grateful that my surgery was successful. The embolization which was to take 1 hour, took 3 1/2 and was the most awful thing EVER. My veins and arteries are like a tangled mass of spaghetti. The awake thing was horrific. The neuro radiologist called me a hero for hanging in there. Where was I going to go? My surgery was 10 1/2 hours. Except for some issues with my shoulder, I am fine. I need extensive PT to keep my shoulder moving while the nerve heals. It’s the only real pain I have had. I left my hair long and am glad. It covers my scar. The tumor was the size of an egg, but my scar is a bit smaller than yours. The team was fabulous. The hospital and nurses not so much. I hope it is over. I have to have a ct scan in April and then hopefully nothing more. I really would have preferred to win the lottery. Good luck to all of you.

  186. I am a brand new 21 year old just finding out that i have a six year old glomus jugulare tumour located behind my left ear. my surgery is scheduled for feb. 2 2012 at Tampa General. there will be three surgeons doing it and they have done over 1000 skull based tumours and almost 50 of this specific kind. i am for sure going to lose all of my hearing in my left ear and possibly lose function of my left shoulder, have facial paralysis, and will have to relearn how to swallow. i am writing to get opinions of those who have already gone through the surgery and to see what i should be expecting post surgery. I hope everybody on here who has had there surgery was a complete success.

  187. Hi Zack,

    Sorry to hear that you’ll be going through this with us. I had the exact surgery surgery 6 weeks ago. Last week I was skiing black diamonds on the ski slopes and a few days ago started jogging again. I was out of the hospital within a few days and off pain medication within 2 weeks. I didn’t loose my hearing and have had no effects other than the 8″ scar behind my ear and down my neck. I kinda even like that. Makes me look tough! If you want to follow my recover you can via my facebook.

  188. Hello Again,

    Thank you, Lilly, for your response last month. And thanks, again, to everyone else who has shared stories on this blog. I think I’ve somewhat come to terms with everything now… not crying everyday anymore, so that’s good. I’m trying to be positive! I have now talked with 3 doctors outside of the Kaiser system. Stanford and UCSF have also recommended Cyberknife, but the House Ear Clinic recommended surgery to remove the part of the tumor that’s in my ear, then observation for a couple years, and maybe radiation later on down the road. I’m still so confused as to what to do. Since I don’t have any nerve issues right now, I don’t want to have surgery and risk getting paralysis, difficulty swallowing, etc….. at the same time, it’s hard for me to put all of my faith into radiation. I am surprised that (I think) everyone on here has had surgery, but yet, the doctors here would rather not operate on me. Zack and Aaron, would you mind telling me how big your tumors are/were, and did you have any nerve problems/symptoms before finding the tumor? Or anyone else, how big were your tumors before surgery and what were your symptoms? Has anyone on here gone through Cyberknife or Gammaknife? Thanks so much!

  189. Hi Nicole,
    I had surgery in Dec 2007 to remove my tumour. I wasn’t given an option for anything else. In my case it was the only option as the tumour had grown so big and was penetrating into the brain as well as my ear. It had grown up from the carotid artery. I imagine that your options are probably given based on where exactly your tumour is and what damage it is doing. I have done as much research as I possibly can and decided that although surgery left me deaf on r side, with facial paralysis,
    swallow,voice problems and shoulder nerve damage etc… The other option of wait and see would have eventually caused brain stem problems and eventual early death. I cannot stress enough though that each case must be considered individually. It is not fair having to make this decision but unfortunately that’s just another problem we have to deal with. Have you spoken to or been offered counselling ? I wasn’t at the time but have had quite a bit post surgery because i just wasn’t coping. You could very well be one of the luckier ones and may have a straightforward case!! If you aren’t completely sure what to do then speak to the doctors again, but make sure that you make the right informed decision that is the best for you long term.
    Take care!

  190. Nicole,

    When my tumour was discovered in Dec 2009 it was because of significant neurological issues that suddenly emerged. I was losing hearing in my right ear and had a bout of vertigo/dizziness but nothing too alarming so the sudden deviation in my tongue and facial palsy were a concern. So then I go fasttracked – my tumour is large (4.3 cm at largest point) and wrapped around the carotid artery. So doctors here (London, Canada – teaching hospital and one of the better ones in Canada for neurological) would not operate – they did confer with drs at Stanford about what to do. Gamma and Cyber were not options for me either as tumour is too large. Only choice given to me was stereotactic radiation (5 week course). In hindsight I am okay with the fact that I didn’t have a choice – would have had trouble making a decision! Dr figures he has given me 20 years, and that will get me to age 70! I have had my max of radiation but maybe in 20 years they will be able to operate?
    It has been a very interesting journey – the radiation wasn’t too bad though there were some side effects as the tumour swelled and put more pressure on the nerves. (double vison and nauseau that was temporary). The steroids that I took to control swelling probably had more impact than the radiation – was so glad to get them out of my system. I continue to have subtle issues with eye movement, tongue, swallow, balance but all are very manageable. Can’t tell by looking at me that I have the tumour. Still, in the past year I have had a noticeable increase in headaches and vomiting. My latest MIR’s show the tumour has shrunk (yeah – as they often don’t) but now I have a CSF leak in the same area. So, not really sure which symptoms are tumour related and which are CSF. As things moved slowly I did take a considerable amount of time off work and was just on a gradual return when the latest issue arose. Now on bedrest til more tests can be done to determine best solution for the leak.

    Best advice is to find doctor and facility that you trust and have some expertise. And remember that every case is different – what works for one person may not for another and we all have different levels of comfort and tolerance. Make a decision that you are comfortable with and don’t second guess. All th best!

  191. Thank you Aaron for the positive feedback it is good to hear and somewhat comforting and glad to her everything went good with you.
    Nicole- my tumor is 3.1×3.2cm transverse and 4.1cm longitudinal, i’m not sure exactly how big that is compared to any sort of object but all the doctors who have looked at it have said that it is pretty large and it is located behind my left ear estimated to be 6 years old. my symptoms before i found out was that i was getting pretty bad headaches and i was hearing about 50% in my left ear. The doctors said the only choice would really be surgery which is going to be feb. 2 because of where the tumor is located and how close is it pushing up to my brain stem and all the nerves around it. When is your surgery going to be, and i hope everything is going good, all you can really do until then is be as positive as you possibly can.

  192. i went to have my mask made today ,ready for my 6 weeks of radiotherphy .had glomus jugulare tumour partly removed last year.no damage to no nerves only thing is my ear is still abit numb.my hearing is now better in that ear left ear..just want it all gone and no more hospital trips .finding it all very stressful and hard to cope with…..hope everyone with this horrid tumour is keeping well …i read all your messages that all put on here ,,some people have gone though a really horrid time ..so i wish you all well xx

  193. Hi Everyone,
    It has been 7 months since my surgery and I must report that I am doing so much better! My voice while still not as loud as it use to be improves all of the time…I am told. I will tell you all this that are getting ready to have it, the swallowing was challenging in the beginning, you have to take it slow. It was best for me to eat soup, yougurt and shakes…for some reason I had no trouble getting steamed pot stickers down…go figure!!! It took baby steps and everytime I took a small bite I would take a drink of water after.
    I have no nerve damage but the nerve was moved in order to do the surgery but over time that has healed as well.
    I did get impatient there for awhile and probably the only thing that I should’t have done so quickly is return to work fulltime. I am partime now until my one year anniversary. please note that I am a teacher of early childhood and lift children all day long. Also my voice was a challenge to sing and read but it’s getting better the more that I rest it.
    I never had any pain from the surgery itself. I was up and waking after my stay in ICU and was able to eat and drink anything I wanted…just challenging!
    I am so glad that I have done this.
    It is a dreadful tumor and I feel for all of you.Not the kind of club that we wanted to be a member of! I am hear to support you just as others did for me! Hang in there it will get better and I know that it is scary as hell.
    Sending you all good wishes!

  194. Hi Nicole….i am sending you a link to a podcast with my doctor who specializes in skull based tumors in Houston. In it he gives advice on what to look for when searching for a doctor, and it’s not a self promotion type pitch. I think if you listen you will gain some insight. Look for a team with expertise in “skull based” tumors:

    http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/skull-base-tumor/index.html
    Click on the first link that appears and halfway down the page is the audio link.

    I’m 52 and based on my age(they considered me young!) my doctors
    said they try to avoid radiation as they don’t really have good 10 year
    plus statistics on the long term affect of radiation to the brain. I
    understand that the House ear clinic is one of the best if not the best in
    the country for skull based surgeries……..you may want to pay attention
    to their advise. I had my surgery three months ago, 4cm in size tumor and have some swallowing issues and a weakened voice, other than that all else is excellent. No pain with surgery, I left hospital in 4 days and only took an aspirin now and then…..it’s not a cakewalk but thank goodness most of these tumors are not cancerous!!

  195. Nicole, also the only symptom I had was a whooshing in my ear. The doctors were the ones that noticed my weak tounge and vocal chords. It is hard to choose to go through this when your symptoms are minor and they discuss all the possible negative outcomes! Keep your faith and find a team of doctors that you absolutely feel comfortable with. I asked my ENT who He would use and he sent me to my team even though initially he sent me to their in house surgeon, they know who is truly the best in your area, so maybe try your initial doctor again?? Just a thought…it will all be good:)

  196. Hi All,

    First of all, sincere apologies for not having updated you with my status. After much procrastination and number of visits to different doctors, my surgery has finally been fixed for 13th Jan 2012. Well, I am trying prepare myself mentally now. The hospital is Dinanath Mangeshkar Hospital, Pune, India and Surgeon is Dr. Jayadev Panchawagh. He seemed to be quite confident about surgery and assured me that he would try his best not to damage any nerves. Meanwhile, during 3 months, I tried to research about good surgeons here in Pune, and last month went to an homeopathic practitioner, according to him, the only cause for this kind of tumor must be continuous state of stress and mental unrest of any kind. I somehow tend to agree that as since last 4-5 years, I have always been stressed out for one or the other reason.
    Guys, Let’s study our lives for last few years and try to get to a rough conclusion whether stress can actually be cause for this. this way, we will be able to educate people more and try to prevent such unfortunate cases.

  197. Zack
    My situation is similar to yours but it took my Doctors 8 years to discover I had a right side glomus tumour. I had surgery three times before they got it right and in March 1994 Professor Paul Fagan (St. Vincents, Sydney, Australia) operated successfully and removed a large rt side GJ Tumour.

    I have been left with absolutely no hearing in my right ear (they have actually closed off the auditory canal) some dysfunction of my right arm, some difficulty swallowing, some difficulty speaking and considerable nerve damage to my facial and glossopharangyal nerves. Another problem that has recently been discovered is that I have a cerebrospinal leak which has never been treated. Every time I mentioned runny nose since my last surgery, I was given medication for sinusitis.

    Apart from the above which I’ve totally come to grips with, I am now 61 years of age, run my own successful business, ride a bicycle for 14 km three days a week, swim 2 km two or three times a week, do an hour’s weight training about 3 days a week and try to walk for at least 45 minutes every day.

    I’m in very good shape physically and mentally, despite my age and am enjoying life to the max. This tumour thingie was just a bit of a hiccough for a couple of years. No biggie 🙂

    John

  198. Hi all. I am looking on here not for myself but for my mom. She is only 43 years old and has a glomus jugulare on her left side ride behind her ear the size of a golf ball. she had cyberknife radiation in october, and it has caused the tumor to stop growing but not to shrink. we live in alabama, and she went to pennsylvania to a doctor to confirm what her doctor said, the tumor is inopperable because of all the nerves it is tangled in. so because there is no way to remove it they are just using different medicines to try and help ease the headaches. some days she rates them at a 3, other days they are at a 9. she is constantly tired and sleeps most of the day every day. i know it has her severely depressed because she has three young children other than me who are very active in sports and after school activities that it is hard for her to attend. as well as not being able to go back to work as an rn because she is on narcotics. any advice or tips for dealing with this would be GREATLY appreciated, and i would especially like to hear from those who have not been able to have surgery. thanks so much!

  199. Hi Mallorie,
    I am sorry to hear about your mom and the ongoing challenges she faces. I do not begin to know her present circumstances. I can only share what I experienced. I knew going into surgery that nerve innervation would be compromised and lost. However, doing nothing was not really an option. I have lost hearing in my left ear, my voice is a little weak and swallowing is compromised. It has been almost one year since my surgery and I’m going to be ok. I appreciate that you asked to hear from those who have not had surgery; I just felt moved to share. I have learned that everyone is different and outcomes can be very different. Keep asking questions and continue to seek the best possible care for your mom.

  200. Mallorie,

    I am 44 year old woman and also could not have surgery. I had gamma knife radiation in August to just stop the tumor from growing. My symptoms are quite similiar to moms. my youngest is 10. I have nerve damage that affects my head, my tongue, my shoulder/arm, my face, my ear, my vocal cord, severe dysophasia, phrenic nerve damage. Different days different things. Some days better than others. Very hard to deal with. My faith in the Lord Jesus Christ and my awesome family get me through. Can’t work now as things are so drastic…Sweetie just you caring is special for mom. Encouragement works well. I’m so sorry you have to watch mom go through this and endure this with the family. Positive confessions are most certainly needed :))))

  201. Mallorie please call the House ear clinic in Los Angeles. They are known to be experts in this field and……. They offer a free consultation. They will talk with you and then will ask to see your Moms films and stuff. They were so helpful and confirmed everything my doctor in my hometown said. I would highly recommend you contact them before you do nothing surgery wise. God bless your mom. http://www.houseearclinic.com/

  202. I read all comments this site. I see everybody is going thru with Glomus Jugulrare. I have been through hell the past year. I went different doctors for ENT. Until my co-worker and friend asked to see specialists. They told me I have Tumor not Cancer. I hate word “C”. I did Biopsy last November and went to Therapy. I am gonna have surgery Jan 24th. I live in Brooklyn, NY. My specialist send me to Upstate NY which One hour from my house…..

  203. Romel, I too live in Brooklyn NY. If you want another opinion, call Dr. Gady Har-El at Lenox Hill. He and Dr. Darius Kohan did my surgery in November and they are geniuses. You need to go to doctors who know what they are doing and not have to travel so much. You will be tired but in good hands.

  204. Hi everyone. My surgery is now 3 months old. I don’t think I’ve previously shared that I am 66 years. Drs. said because of my good h ealth and state of mind they felt that I would recover completely. Well I’d say they were right for the most part. My biggest problem is the disgusting pain in my right shoulder. I now go to physical therapy twice a week. I am an avid exerciser and had been long before the diagnosis of the tumor. I feel truly blessed in the way I have been able to accept the new “norm” lifestyle. I can’t hear in my right ear and was told it is permanent. I was told that it is not deafness therefore a devise called a BaHa can be installed later and will restore hearing. I have no problems swallowing, no hoarseness in my voice. I do still have slight numbness in my face. Some mornings I feel such a tingling there that it really frightens me but once I’m up and active it subsides. The blocked ear itches a lot inside and I can’t scratch it. I am scheduled for cyberknife radiation to shrink or prevent continuous growth of the portion of the tumor that is in my brain and was too dangerous to remove. Anyone who has had these treatments let me know how that went. This tumor has no respect for age. Be blessed and as someone else said thank God they are not cancerous. The scar is hidden by my hair and the one on the neck is not noticeable unless I point it out. That was my greatess fear that all of these years with a “perfect” face and neck I would be scarred. LOL.

  205. Hi All,
    It’s 9th day after my surgery. My tumor was partially removed so as to avoid any damage to my facial nerve. I am gradually improving. I have a stiff neck and a little weakness in my right shoulder, difficulties while chewing anything hard from right side. My stitches will be removed on 25th. Rest all looks ok.

  206. Hi All,
    I was diagnosed with Glomus Jugulare tumor ( Left side) in August, 2011. I am schedule to have surgery on Feb 21, 2012. The embolization is on Feb 16. I have cried after reading all of your posts. However, it is so encouraging to hear that most of you are doing well! I have a couple of questions! After the embolization, do you have strange sounds in your head? and do you go home right afterwards? I have a constant heart beating in my head and a ringing sound. I was a heart nurse….so I feel like I forgot to take my stethoscope out of my ear.
    I am thankful to have found this blog and all of you.
    Kindly,
    Sue

  207. I know what you mean about the heartbeat. It was wicked. I had always suffered from headaches, had one that was constant from August until November 29 when I had my surgery. The headache was gone when I came out of anesthesia and though I have had a couple of weather related headaches since then, I have had no headaches related to the surgery. I do have the awful pain in my arm. I was able to come down to a warmer climate and am now working it out in the water for a couple of hours a day. It was explained to me that this pain will not diminish because of the therapy and exercise. But the exercise will keep my shoulder from freezing when the nerve decides to get better. I had some neurological pain in my right hand until last week, but then I woke up and it was gone. I am hoping that will happen with my neck and shoulder. I had a medical massage today and that helped the most. My face and ear are weird. I am afraid to wear a dangling earring for fear of it getting caught on something and ripping it out. But that is all negligible stuff. My eye blinks, my smile smiles, my shoulders shrug. My ENT neurologist is still optimistic that my hearing will improve once everything from the membrane back into the jugular dissolves and dries up. I can live with the muffled right ear. I am happy to have gotten to this monster while I was still in control. Good luck and check back.

  208. Sue–Try to get your surgeon and neuroradiologist to get together their schedules so you can stay in the hospital after the embolization and have surgery next day. It would be easier on you. There were no noises in my head after either procedures. You will still hear your pulse, but not anywhere near where you are hearing it now. Once the gel they pack your ear with is gone, the heart beat won’t be discernable. You must think positive and keep thinking positive. What could have happened if they had not detected this is too awful to think about. So, consider yourself “lucky”. I know, the whole ordeal is disgusting, but you will get through it. Good luck.
    Claire

    1. Claire,
      Thanks for your response. I met with my Doctor last week. They are finding that after embolization, the longer time between surgery is better. Probably depending on your tumor. So the embolization will be Thurs Feb 16 and the surgery is Tues Feb 21. I am scared but grateful to be able to have it removed.
      I have a lot of friends praying for me. I hope your pain goes away soon. It takes nerves a little while to heal.
      Thanks,
      Sue

  209. Prayers to Sue. May the embolization be an easy one, and the days in between easy for you. May your surgeons be guided by everything positive.
    Claire

  210. This is in regard to my son Mike. He had his first GJ Tumor removed in a 12 hour surgery July 1999. He was left with a paralyzed right vocal cord. ( he now has a teflon cord )but is still hard to hear at times, a right eyelid that droops, nerve damage to the right facial area,nerve damage to the right shoulder area, loss of the outer carotid, and frequent headaches. In 1997 he had a recurrence of the tumor. Another 12 hour surgery. Now he is hearing the Tinnitis, but on the left side. We are so worried he has developed another GJ tumor. Has anyone out there had more than one tumor? Any advice on the frequent headaches? Also are these tumors hereditary? Would love as much info as possible.
    Thanks.

  211. Mallorie
    Try UT Southwest Medical School, Dallas Texas. My son’s first tumor was very large and was also wrapped around many nerves. The tumor was wrapped around the Carotids, the Jugular vein, and other structures. The docs at UT Southwest and Zale Lipshy were remarkable.

  212. Am considering myself lucky so far. Has anyone had any shoulder relief from an injection of lidocaine into the scar tissue? I am seeing an alternative doctor for arthritic knee. You can all understand that I do not want to see the inside of a hospital any time soon. In the course of my treatments, he suggested an injection into the scar tissue under my ear. Having had my surgery in late November I am a bit nervous. My surgeon doesn’t believe in anything alternative on general principles. I am grateful that I only have shoulder issues which are improving, but I would like the pain to go away and the mobility to improve. Oh, the treatments are helping my knee.
    Good luck to all.

  213. Hope all is well with everyone. I am still in a great deal of pain and now my left ear is bothering me. I have been given a choice of doing nothing, hearing aid, revision surgery, or a BAHA to recover my hearing. I told the surgeon after all the hell I went through I am doing nothing for now and see him when I see him. I am with Claire I do not want to see the inside of a hospital or a doctor’s office for a long, long time even though there is a fight with my employer about issues with my hearing. The numbest in my tongue I believe is here to stay.

    The strangest thing it has been nearly 11 months post surgery and my dogs always cuddle up and try to lick the operated ear. They sometimes growl at it. Call me weird but I heard of stories where dogs were able to sniff out diseases when doctors weren’t able to find anything.

  214. I am so glad to have found this site. I was diagnosed with a jugular glomus tumour in December. Had a MRI last week and now I am waiting to see a specialist in Nova Scotia. My ENT in New Brunswick said he had only seen 3 of these in his whole career. I will be going to a teaching hospital so hopefully will get good care.

    My tumour is smaller than most of you. It is only 1.5 cm by 1.5 cm. I was lucky my gp caught it early. After a two courses of antibiotics and my ear was still red she sent a referral to an ENT specialist.

    So far I have lost some hearing on the right side, my right eye droops a bit (especially in the morning) and my right shoulder is drooping as well. Other than headaches, I rarely have any pain. The whooshing is not fun to say the least, and my head feels numb and “full” on the right side.

    The waiting is the worst, since this is a slow growing tumour I have been told that the wait to see the surgeon may be awhile. I hope not. Meanwhile it is nice to have found some people who have or are going through the same thing.

  215. I wish I had seen this sooner. I had a glomus jugulare tumor which was treated in Nov. – Dec. 2008. I had 28 fractionated radiation treatments. Since then, I have had few problems. I had some problems with vertigo before treatment, but have had very few dizzy spells the last two years. My hearing loss is quite severe in that ear, and I have a constant tinnitus, but the “heart beat” I could hear in my ear has gone away. I would certainly get more than one opinion before surgery.
    I am very interested in the experiences of all fellow tumor patients.

  216. Hey guys, its been six week since the surgery and things are finally starting to look a little better. They were 99% sure going into this that it was a glomous jugulare but it actually ended up being a schwannoma. I was stuck in the hospital for 3 weeks because of a few things that went wrong. I ended up having a spinal fluid leek which they had to go in and repair, i also got really bad pneumonia and had problems with my vocal chords so they had to do a temporary injection to help me talk and caugh(has anyone ever had this injection). I can’t eat or drink anything or even swallow my own saliva so they have me on a peg tube for about six more months they think. I also lost my hearing in my left ear and all i can hear now is loud static which the doctor says should dissipate. The pain after the surgery was not that bad because of all the pain medicine i was on, but i ended up having five surgery’s in 3 weeks which, the doctor said its gonna feel like you’ve been hit by a mac truck(and right he was) but since i’m so young that plays to my advantage. The whole team of surgeons at Tampa General Hospital was amazing. Linda- did they say they have to do surgery or can they do some kind or radiation or something like that?

  217. Hey Zach,

    Ouch! You have been through a lot. Hope all is better soon. Your age will help you bounce back quicker I’m sure.

    I am 57, so hopefully won’t go through what you did. My tumor is a lot smaller than yours was so that will play to my advantage. I really don’t know what they are going to do with mine. I am waiting to see a specialist. They do not have one where I live only 60,000 people in this small place. I have been waiting to see someone in Halifax and I hear it takes a long time to get in to see him. However, I had a chance meeting on Friday with an ENT doctor who gave me some names of a couple of doctors in Toronto. I am going to ask my ENT to refer me there. A little further to travel for me but I understand I will get in there much quicker.. here’s hoping.

    I have a 22 year old son… so the Mom in me is having a hard time with somenone as young as you having to go through this.

    Keep me posted!

    Linda H

  218. Pat J.

    I know what you mean about finding this blog. I was so glad I found this so soon after my diagnosis. It is really nice to share with others as these darn things are so rare.

    I was wondering how large your tumor was. I am hoping where mine is not that large it may not require surgery. Mine is 1.5 cm. However it is a jugulare (in the jugular fossa) not just the ear. I guess I will just have to wait and see what the doctors suggest.

    Linda H

  219. Hi Linda (and everyone else),
    I’m not sure how large my tumor was, but it was not large enough to cause me any problems with facial muscles, etc. The only symptoms I had were the tinnitus and some vertigo. The ENT doctor referred me to a surgeon, but after hearing all the possible complications and researching it myself, I asked my insurance company to find me a radiation specialist for a second opinion. I went to a radiation oncologist at Huntsman Cancer in Salt Lake City, even though it was’t cancer, and he was sure mine could be treated with only radiation. I had very few problems with the radiation…a little tiredness was about it. I was 65 at the time. I understand in a younger person they feel surgery is a better choice, but I am extremely grateful I didn’t have to go that route. There is little information on long-term complications, since they haven’t been treating it this way for many years, but I feel every day I can keep up with my regular schedule is a blessing. I am a school teacher (half time now) and only missed one day of school during my radiation. I was full-time then. Good luck! I’ll be watching to see what happens.

    Pat J.

  220. Hey linda, thank you very much but yea it’s kind of a big shock when you hear something like that and i know the waiting is the worst part but have faith and everything will be alright, keep me posted when you find out anymore.

  221. Hi all,

    Just had my one year anniversary; glomus tumor removed in March of 2011. Life remains a challange; one I am most grateful for. Keep the faith.

    1. Happiness to Dan. I am 4 months into recovery and happy to be in such relatively good shape. I have upcoming appointments and am a bit nervous, but I try to transcend. I am happy to have this blog. I wish more people would follow up so we would know what to expect. I am still experiencing limited mobility in my arm, neck and shoulder. The pain is always there, though I am getting used to it. Does this ever go away? I work it out every day to avoid the frozen shoulder business, but what comes next? I am still very tired. Is that in my dopey head? No one seems to give me any concrete answers.
      I hope all of you are recovering.
      Keep in touch.
      C

  222. Dan and all,

    I too am celebrating! – it has been 2 years since I finished radiation treatment for a ‘very large and insidious’ gj tumour. I continue with recovery after some unexpected setbacks – still have several ‘annoying issues’ that my ENT says may take 3-5 years to resolve and I realize the ‘new normal’. And so this journey that I am on, with its many twists, turns and challenges, continues. All the best to those of you that continue to fight the battle.

  223. Hello sure is nice to hear all of you guys testimonies. I am 26 years old and was diagnosed with a very large (2″x 1″ I was told) gj tumor on the left side in mid January of this year. I have constant double vision, almost deaf in the left ear other than the swooshing, ringing, and heartbeat sounds that are also constant, and weak left shoulder and arm. My surgery is coming up on april 3rd in Nashville and the embolism is on the 2nd. I am obviously nervous but also very anxious to get it over with and begin my recovery. I have great faith in my doctors and god and haven’t let it bring me down. I will give an update asap. Thanks to everyone for sharing your experiences:)

  224. In 1987 I had a lemon-sized glomus julare tumor removed from the right side of my head/middle ear. The University of Washington gave me a 20% chance to live. I was only 21. I am now 46, a radio news director, and am having some serious issues. I need to connect with others who have had the surgery from years ago or have had the similar symptoms. In recent months, the area around the side of my head has been aching, the facial nerve (which is inside my right ear that is permanently plugged) is resulting in some slight paralysis, etc., and in the last couple of weeks I am getting things like a seizure, although I believe they are more like a massive charlie horse along the side of my head, jaw, and tongue. My whole head is “buzzing” – the ringing in there is awful. My memory is having some difficulty as well. I am scared to death. I would like to connect to others who have experienced this surgery….I am so thankful to have found not only this site but the Facebook page. I AM NOT ALONE!! 🙂 You can find me on Facebook at Mia Carlson-Simpson. I also posted on the “Diagnosed with Glomus Tumor Jugulare” Facebook page for an easy link to my personal page. Please contact me. Thank you!! 🙂

  225. Hey Caleb,

    Good luck, I’m sure from all the reading I have done, you will be fine. I have a lot of family in Nashvile and 2 of my nieces are nurses. They always say they have the very best hospitals and doctors. Keep us posted.

    Mia, I sure hope you have been to a doctor. These tumors can come back which you will see if you read some of the older post. I can’t help you, my tumor is new and I’m still waiting to find out if I will have surger or gamma knife surgery.

    Take care,

    Linda H.

  226. Wow. Thanks Mia, I thought I was the only one who experienced the massive charlie horse along the side of my head as well as the bad of my head. When I mentioned this symptom to my doctors, they all have this perplexed look on their faces as if I am crazy. I am still working with alternative methods to relieve the pain. Feel free to send me a message through my blog. Just click on my name it will take you there.

  227. Hey Claire,
    What is pretty obvious is that while all of us who have dealt with the effects of a glomus tumor experience similarities, there are also many differences ranging from treatment to recovery. I too experience weakness and a lack of mobility in my left shoulder. Very early in my recovery I attempted therapy to regain mobility; my other issues sort of overshadowed the shoulder and I chose to no longer seek treatment. Today, my shoulder has improved. I have little pain with decent mobility. My bigger challenges remain hearing, speaking, swallowing and vision all of which have improved or it could be that I am learning to better cope with the changes. There are still things that I experience daily which are bizarre. I kind of chalk them up to the aftermath of a traumatic surgery. I was told up front what to expect and most has been spot on. I went back to work after about three months and now a year post surgery I work 50-60 hours a week. Yep, I’m tired but most likely due to the long hours at work. Most things are improving with time; I hope they continue to improve.

  228. Embolism went great. My left jaw and neck is pretty sore but that is understandable. My voice is back to normal for now. Thank you linda h for the encouraging words you was right about the doctors . Tomorrow morning is the surgery. Can’t wait to put this all behind me:)

    1. Caleb,
      I had my surgery on Feb 21. So I am six weeks post op tomorrow! My voice is weak and shoulder a little sore. But I am thanking God for his faithfulness! My tumor was large and on the left side as well! I will be praying for you! I had mine done by the Drs at Duke. It is wonderful to sleep at night without the pulsating sound!! Caleb, take comfort in Ephesians 3:20-21. God is able to immeasurably more than we ask or imagine… My surgery was 11 hours. All 3 surgeons were elated with the results of the surgery. I am thanking God!! Praying for you!
      Warm regards,
      Sue

      1. Sue,
        I had my surgery done at Duke 1 year ago; we most likely had the same surgical team. I hope you are doing well.

        Dan

        1. Dan,
          I had Dr. John McElveen, Dr. Ali Zomordi and the Rock Star surgeon Dr. Tak Fukushima!! I chose to go to Duke Raleigh Hospital. We call it Little Duke! Do you live in the area?
          Sue

          1. I live outside Hillsborough and work in Durham. My surgeons were Dr. Friedman, Dr. Kaylie and also Dr. Fukushima. My treatment was at Duke.

  229. Good luck to Caleb. May the surgeons be guided in only the right directions. For me, the embolization was the worst part of the ordeal. Who knew I have abnormally crooked blood vessels?
    I am still plugging away with the shoulder exercises and deep tissue massage in an attempt to remain mobile. Having always been a do-it-yourselfer, the lack of mobility is very upsetting for me. But I am grateful. I do have upcoming follow-up MD visits and testing coming up the 23rd and am getting very anxious. I so want this ordeal to be overwith and not hanging over my head like an executioner’s slow sword. Let us all will this stuff away. Let us all be healed and healthy.
    Claire

  230. Hey Caleb,

    So glad it went well. Be good to yourself ! You are young which will help you in your healing. Keep us posted.

    Linda H

  231. I am so glad to have this blog. No one understands what we have endured and they just poo poo everything.
    I am gong for my check ups on the 23rd and very nervous. Don’t know yet if this is the one where they will determine if I need radiation or just CT scan at this point. I try to stay positive, but it gets to me sometimes. Am back up north and will try not to get lazy about the shoulder and neck work. It was easier to work out in a pool daily. I just want to be my old self. New and improved wouldn’t be bad either. To all of you out there, Feel Great. Keep the dialog going.

  232. Hi, I stumbled upon this blog while searching for any kind of information on glomus jugulare tumors. I was diagnosed in Feb 2012 with a 1cm tumor sitting on my 12th cranial nerve and leaning towards the 7th and 8th nerves. My symptoms were losing movement in my tongue and ear ringing non-stop. I thought I was having long term effects from my athsma medication but was greatful my primary care dr wanted to “rule some things out”. Unfortunately there was a tumor and I was told by my primary on a Friday evening. I was devastated not knowing what exactly a “masse”meant until the following Tuesday. All I could think of was I still had so much to teach my 14 year old daughter. After meeting with 2 neurosurgeons and a radiologist I (and they_ decided on Gamma Knife because side effects from surgery were too devastating (trachea, feeding tube, deafness, facial paralysis). The dr’s also said there is less than a 5% chance of the tumor coming back and was less than surgery. It seems most people here have opted for surgery so I’m wondering if the decision is made based on the size of the tumor. I had Gamma Knife on March 16th and will go back for a follow up on April 24th. I’m not sure what they can tell me because from what I’ve read, most tumors don’t start to shrink anywhere from 2 months to 2 years. My symptoms did get worse from swelling. I get headaches, nausea, louder ringing, trouble swallowing. I’ve said I can live with these symptoms even if they don’t improve because I still have life. I also have hope that my tumor will shrink and eventually go away.

    1. My take is that all this depends on where your tumor was, how big and entangled the mass was, and where you live and have access to medical care. Bottom line, you did it, you are here to tell the tale, and ike the rest of us, no matter what was done, we will have to be monitored. The consistent info is that no matter what, it is slow growing. We hurt, we are not what we were, but we are here, through this blog, we have each other and we will all survive. Good Luck. Claire

  233. That scar looks so familiar to me as I have the same one 🙂 I was diagnosed with my tumor in 2005 (6 months before my wedding day). I have had some complications here and there but hopefully here in 2012 I am done having surgeries (I have had 6 but not due to tumor, due to inner ear not healing, infections things like that, 3 skull removals). I had an amazing set of doctors out of Hinsdale Illinois who saved my life and my hearing. Immediatly after surgery I had nerve problems, facial paralysis (which luckily went away 2 weeks before my wedding) . Currently I have terrible tenitis and off an on have problems with taste in my mouth where I taste metal all the time and I can only fully taste on the left side of my tongue and pockets in the back an on the tip. My scar healed up nicely. I used aquaphor and you cant even see it. The dent in my head is far more noticable than my scar. Most people cant tell.

    I will check out your blog more in depth. Thanks for posting.

    JEnny

  234. Has anyone else had a tumor as big as mine (size of a lemon) or had their surgery as long ago (24-1/2 years)? I was 21 at the time and am now 46. My whole head has been ringing for the last four months and the whole right side of my head aches. Since surgery there has always been ringing in the right ear, but this is much worse. I had an EEG yesterday – no results yet. Next step is MRI. The facial paralysis I had for the first 4-1/2 months following surgery at the University of Washington is coming back slowly, which is not a good thing since I am a radio news director. I am scared to say the least! I am so glad I am not alone, although I am sorry that so many have had to endure this type of rare tumor. I can be found on Facebook at Mia Carlson-Simpson. I would love to get to know more people who have gone through this. You are the first people I have known to have been through it.

  235. Claire,
    Having a very bad day today. Dealing with my 3rd tumor. No treatments can be done. Just wanted to say thank you for what you said needed to hear that today. Sometimes I forget how strong we are to deal with this thing and push on every day. This thing sometimes has a way of making you feel very weak in spirit. Thanks for the reminder and the pick me up
    Linda

    1. So sorry, Linda! Prayers and hugs are going out to you! And yes, thank you, Claire. I was lying in bed and feeling badly about these new symptoms when I read your comments. We are a rare group of exceptionally strong people. 🙂

    2. I think people forget that there are serious illnesses other than cancers. All the cancers have support groups and tons of information out there. Believe me, I am not jealous. I just need everyone here. My friends and family have an attitude that since I look okay, I must be okay. They don’t get that there is still pounding in my hearing compromised ear. If I say speak up, they think it”s funny and yell unreasonably. They don’t get that I can’t raise my once super strong arm to do little things like wipe the toothpaste spatter off the mirror. They don’t get that tumor was left behind, and I am fearful of regrowth. I am grateful I am in relatively good shape, but feel extremely isolated. Though we are a small number, we are just as terrified as other groups. I am pulling for you. Where are you? Can you take some pleasure in a sunny day? A spring flower. Find something simple and make it a big deal. I am with you. Have good days. C

  236. I head back to see the doctor,otolaryngologist in a couple weeks. It is coming up on thirteen months since my surgery. Much of my follow up care has centered on post op conditions related to hearing (lack there of), speaking, equilibrium, swallowing, shoulder movement, headaches and even vision. Pre-surgery I was told that one year out I would have a better understanding of what to expect life to be. I remain optimistic that things will continue to improve. I have opted to forego three elective surgeries at this time. One would raise my left eyelid (Horners syndrome), another would reduce the tone of a muscle at the top of my esophogus and the third would implant a hearing device (BAHA). I had three surgeries in my first three months of treatment and a total of five hospital stays. I’m going to ride this out for now. It’s a gorgeous day, life is good. It’s just different. Take care everyone.

  237. Claire – you are spot on. My family and co-workers do not understand because I look normal. Since I just had Gamma Knife I’m paying close attention to my symptoms to see if I develop any new ones from the swelling or if old ones improve. My husband told me maybe things are just because I get older everyday (although I’m only 46) and things are just age rather than radiation. I get fatigued on and off that I’m not used to. I’m a mom and need to learn to just say no sometimes. My ear seems to ring the loudest at night when I’m trying to go to sleep. Subsequently, it impedes on my hours of sleep since I have to get up at 4:30am to work 6am-2:30pm Mon-Fri. I’ve found I get forgetful at work, which was not like me in the past. I talked to a co-worker and she said she has the same issue. That sort of offended me because it was like saying I hadn’t gone through anything and minimized the seriousness of my tumor. I agree – find pleasure in small things. We finally had a sunny day in the northwest and I was quite happy to spend the day in the yard. It took my longer to get tasks accomplished, but the warm sun felt healing!

    1. Robin, I found that I did best at night with the radio on, or the ear buds for the Ipod in my ears on the odd chance there was someone with me. The noise is worse when the room is quiet because you have nowhere to hide from it. Try it. I as so grateful for this blog. Let us make sure we keep it going, especially if you feel on top of the world. We need to hear that as much as we need to commiserate with the bad stuff. Let us all be great. C

  238. Hi guys,

    I read an article once about cancer patients and how they felt that they couldn’t talk to anyone about their condition. People didn’t know what to say to them and tended to trivialize their concerns by saying things like medicine has come a long way and you will be fine.

    I was feeling like that a few weeks ago because even some of my close friends and family seem to trivialize my tumor. … and then it came to me, that I have done the same thing to other people who are sick. You don’t know what to say and you feel you have to say something positive so you end up saying the wrong thing. So I forgive everyone. I have decided to limit my discussions with just a few people who are understanding. That is why I love this blog.

    What I really like about this blog is that we share a common experience, our tumor size, symptoms and treatment may vary but we are going through a similar condition. So if you need to vent, go ahead, we will listen.

    I finally have a date to go the Sunnybrook Clinic in Toronto, May 30th. Meanwhile I try to do yoga (despite the vertigo) and/or walk everyday. It helps to keep me sane.

    Thanks for listening,

    Linda H

    1. Robin, where are you in the Northwest? I am in southeast Washington State and am also 46. I got the results of my EEG today and they are normal. This whole head ringing and the entire side of my head aching is driving me crazy. My surgery was in October of 1987 at U of W in Seattle, tumor was size of a lemon. I have had some ringing in the right ear ever since, but it was manageable. These new symptoms have been building in recent months. The more I think about it, the more it seems like there is another tumor, but in my good ear. I can’t get in with a specialist until the 26th. Thankful to have others to converse with so I know now that I am not alone as I travel this bumpy road. 🙂

  239. Hi Mia, I live in upper NW Oregon, near Washington. I’m sorry to hear you are facing symptoms again. Was your first surgery resecting the tumor? I don’t think there is very much information out there on the reoccurrence of this tumor other than they are usually benign and do not spread elsewhere in the body. My neurosurgeon said with Gamma Knife there was less than a 5% chance of it coming back and that it should shrink and turn to scar tissue. There are so many feelings a person with a tumor goes through that I don’t think others understand. I felt a lot of guilt because I didn’t want to have to tell my mother after my dad and sister both died at the age of 43. I felt like I had knowledge that if I let it out would change the world of those around me that depend on me and if I could just keep it in it would maybe go away. I felt like I needed to write down the life lessons I wanted my daughter to learn because I’m a single mother and no one else would have the same influence as me. After jumping off the deep end I feel weird that after a 4 1/2 hour procedure the possibly life threatening issue is just supposed to go away. I don’t know what to believe and feel like I keep searching for something to tell me everything is going to be fine even though I know no one can tell me that. I feel comfort reading other’s stories here and can totally identify with everyone. I’ll be looking forward to hearing about your appt with a specialist. I have a follow up on the 24th but not sure what to expects after 6 weeks. Take care of yourself.

  240. Thank you for the suggestion, Claire. I’ve slept with my tv on since I was a teenager for the background noise. I have never been able to sleep with complete silence. I think I hear the ringing most when I’m shutting my mind down to sleep. I try to keep my sense of humor through everything. I tell my husband I have one last normal cranial nerve and he’s on it! I was in a meeting at work the other day in a conference room. A woman came into the room and commented on how quiet it was in the room. I said not inside my head!

  241. Hello all,
    Well tuesday will be 2 weeks since my surgery. I have got to say that I feel alot better than I ever expected I would. Im still very sore and numb around my neck and ear, also gotta pretty sore throat but slowly improving. (very slowly). I go Monday to get my staples removed and go for my 1st follow up on the 26th. The embolism was a 5 hour ordeal which I was asleep for but worked wonders because they told me I only lost about 5 tablespoons of blood. My surgery lasted around 12 hours and I woke up shortly after, I couldn’t move my head much or open my mouth very wide because my jaw was hurting, but the pain wasn’t that bad. Seemed like the worst pain was from the staples in my stomach from the free liposuction. But it also wasn’t that bad. In the icu They had me up walkin around the next day and a
    little more the next and on the third day they sent me home. Although they didn’t remove all of the lime size tumor, because it was wrapped around alot of nerves , they did get most of it and keep an eye on it. I still have a long road of recovery ahead of me but just feel blessed to be alive . Thanks to everyone for the kind words and prayers and I will keep you all in my prayers

    1. It sounds like your surgery was extremely similar to mine, Caleb! Size of tumor, free lipo, getting you up and moving, etc., and mine was 24-1/2 years ago! So glad you are doing okay! Continued prayers for your recovery! I am curious – do you have any facial paralysis? They had to move my 7th facial nerve and it sits inside my ear, which is permanently plugged. I had complete paralysis on the right side for about 4-1/2 months, and have always had numbness in lower jaw since.

    2. So happy for you that you have pulled through. My embolization was 3 1/2 hours AWAKE. It was the worst thing I have ever experienced. But it did make the surgeon’s job easier. I am facing my follow up visits next Monday. I am very nervous.
      Do what you are told and don’t feel bad if you are tired. I had my surgery in November. I am still tired.
      Continued positivity.
      Claire

    3. Hi All,
      So happy to hear you are doing well Caleb!!! I just had my 8 week check up with my ear specialist! My tumor was the size of a large meatball–2 inches large. He said I had the motherload. I still have my hearing in that ear! But I have remenants of tumor still pulsating. My facial nerve is intact because they did a new bridging technique. My vocal chord on that side is not functioning but I can swallow well. No drooping face, just a little strnge feeling on the side of my tongue! And chocolate doesn’t taste good right now!
      So now I am wondering if any of you have had radiation. What kind of issues did you have? Also, did any of you have the vocal chord moved over either temp or permanently? So grateful for God’s faithfulness to me this far! Praying for Him to finish this strong with me and all of you as well!
      Kindly,
      Sue

  242. Glad to hear you are on the mend Caleb. Sounds like quite the ordeal. Not sure what the free liposuction is about. Keep the faith and be good to yourself. 🙂

    Linda H

  243. Welcome back Caleb; it is great that you’re doing well and on the mend. Please keep us posted as you continue to improve. Take care and God bless.

  244. Thanks everyone, staples are out and they said I’m healing up good. Mia- I don’t have any facial paralysis but the whole left side of my face is very sore. Hurts to chew, swallow, smile, and laugh but at least I can still do all those things. The strangest part is the numbness. I can’t feel my ear or my lower jaw/neck area all the way to my chin, but hopefully it will get better with time. The “free lipo” was because they had to take fat from my stomach to fill in the tumor hole. And I’m glad they put me to sleep for the embolism, doesn’t sound like much fun to be awake during the processors. My prayers are with you all

    1. Caleb, I got the free lipo too! LOL That makes us fat-heads. HAHA I remember my jaw hurting bad too….if I recall it was because they had to move the jaw forward in order to get as much of my tumor as possible. The numbness still continues today after 24-1/2 years ago, but it is only about 40% after all this time. I remember the first time I could feel my ear again. My little cousin was sitting on my lap and I could feel his head against mine. I was excited! That was only about two months after surgery. My right ear lobe ended up looking different and it is lower than the left. But hey, at least I still have it, right? LOL (It is the little things) I was out for most of my embolization. At the time, there were only five doctors in the U.S. that did that procedure. But when I did wake up….O M G! The pain was horrible! But it did save my life. I had donated a unit of blood per week for four weeks (I was white as a ghost) in preparation for the surgery. Because of the embolization, I only needed one of those units back….and the tumor shrunk away from the brain just enough so that there would be no brain damage. Dr. Robert Dobie did a phenomenal job, along with the brain surgeon (never did know his name), along with the seven doctors at the University of Washington. Take care, Caleb! I wish you the best!

    2. Caleb, I experienced all of those same things. My tumor was removed November 29th and I am still experiencing weirdness in my face, though the numbness is starting to ease. I still have the metallic taste, but it hasn’t stopped me from eating in search of the perfect flavor. I eat out of nerves. I could have used the free liposuction just to improve my belly, but they didn’t need to remove any substantial amount of bone even though the tumor was egg sized. My arm is the biggest problem, but I am dealing with it.
      I would like to know if any of you have had skin problems at the incision site. Besides a pulling at the ear lobe, I have developed almost a a bumpy rash in the area. I have the doctors–head and neck surgeon, and then the ENT neurologist, next week. I figured I would wait before I see dermatologist. I still count myself lucky. I am going to go outside and enjoy the spring, after the laundry of course. These little things remind us, life goes on.

  245. Caleb,
    I reached 8 weeks post-op today! The fatigue and soreness is close to 100% better!!! Hang in there and rest a lot!! It pays off! How is your voice?
    Sue

  246. Hello everyone
    I went to see an ENT in December 2012 due to a problem with my inner ear I’ve had this problem for most of my life I’m British and was fobbed off for years by various GP’s.
    On Friday Dr Clarke called me to say the radiologist had found a Glomus Tumor on the right hand side of my neck on my jugular vein this has eventually gone into my right temple lobe basically it’s in my brain.
    This is what I don’t fully understand how can I be walking around feeling fine with just some minor occasional discomfort in my right ear drum and sometimes when I swallow but have a soft tissue mass in my Brain?
    I’m scared, shocked and very confused I’ve read most of your blogs your brave and strong but none of you talk at all about the symptoms you had before diagnosis, it reads to me as if you are worse off after the operation than before !
    Please can any of you tell me how you found out and how you are now as your blogs are a few years out ?

    On Tuesday I go for my MRI so will know more I just feel over whelmed and wanted some first hand advice ..

    With much respect

    Fiona ;-(

    1. Fiona:
      Yes, this is all too difficult to understand. I was exactly where you are last August. I went to the doctor thinking I had swimmer’s ear. I had surgery the last week of November. Had my 4+ month exam today. I have some hearing loss, discomfort in my face and pain in my shoulder. If I shout, my voice is not what it was. But I am retired from teaching and don’t need to shout much anymore. It was explained to me that if I did not have the surgery, all of the possibilities of things going wrong after surgery would come on me without any control over them. The loss of control over my options didn’t sit well with me, so I decided to go for it. You need to have a positive attitude and wait for your MRI/MRA results. You need to be with the most skilled surgeons you can find. We are a small club and you need to be with a team who knows what they are doing. The average surgeon is not an option. Just like the average ear doctor was not for us. Where are you? I am in New York and can give you names of my surgeon, ENT neurosurgeon and the neuroradiologist. You WILL get through this. There’s a lot of waiting around. I found that this blog is the best thing. There is very little info out there. I check this blog daily so let me know how you are doing and if you need more info.
      Claire

  247. Hi Fiona,

    You sound scared. I am too. But I have done a lot of research as I am sure you are doing since you found this blog. My first symptom was a swishing sound in my ear. Sounds like a lot of other people in this blog had the same thing.

    My MRI had the salt & pepper appearance of a glomus tumour which is vascular in nature and very slow growing. My tumour is only 1.5 cm by1.5 cm so I only have vague sympoms .. feel of fulness on the side of my head and ocassional dizzy spells. I also seem to have phlem in the back of my throat a lot. My right shoulder and my right eye droop a bit but you have to be looking for it to notice.

    I have an appointment with a neurosurgeon and ENT in Nova Scotia on May 7th. I was told by my ENT here that somtimes the approach is to wait and see, radiology or surgery. I think, like me, they found your tumour early so you will have more treatment options. Many people in this blog have tumours the size of lemons and surgery appears to be the only option.

    Keep us posted Fiona. I know it’s easy to say but difficult to do but try not to worry too much.

    Linda H

  248. I just reread your message and realized yours is temporal now, mine is jugular. From reading the other blogs here I am very interested in gamma knife surgery. If you haven’t yet you should research it. I plan on discussing this option with the neurosurgeon at my appointment. It’s fairly new but if it works for me it would be a better option than a 10 hour surgery.

    Have you in my prayers,

    Linda H

  249. I read the blogs and see a little bit of myself in each one. As you may have read I now have my 3rd tumor. I can have no more treatments. My first surgery to me was a breeze. Embolization, surgery home in three days. Back to work in less than six weeks. I thought I beat this thing. So I am so sorry that you are dealing with these things. As far as symptoms I had none with my first tumor I went for my yearly checkup and was told I had an ear infection. I kept telling the Dr. my ear doesn’t hurt. The usual take the meds come back. Went back still there Finally went to an ENT found out that day what I really had. Two weeks later surgery. that was in 1997. In 2003 I thought I really did have a ear infection. Wrong again my ENT looked and backed up shaking his head. Tumor back. Went through 31 radiation treatments tumor kept growing. Slow growing , I don’t think so. Sent me to Nashville in 2004 , Five hour embolization. 18 hour surgery. 13 days in ICU no food no ice chips no anything. Would not let me up to walk due the spinal tap in my back. I lost 4 nerves that day 3 to my throat and the one that controls me lifting my right arm. Also got the tummy tuck. I tell myself now that my fat cells are fighting when my headaches get really bad. Sound bad yes Was it worth everything that you go through YES. There will be improvement. Now that I have my 3rd one I find that this blog is so comforting to me because someone understands. Sometimes it’s hard for others to understand because you can’t see this thing so to them it’s almost as if it’s doesn’t exist but you here know as I well know boy does it. I have the facial paralysis not too bad but I notice. I have the implant to push my vocal cords together so I can speak. Sounds horrible but I am so Blessed to be as I am. Try to keep good thoughts even on the worst days. Thanks again for listening and understanding. It means more than you will ever know.

  250. Fiona –

    I had the same symptom of feeling like I had an ear infection. It would go away and come back so I didn’t go to the doctor. My real telling symptom was the right half of my tongue started to wrinkle and then over time it started to shrink. I have lost the ability to move that half of my tongue. I also had loud rining in my right ear and occasional swallowing issues that I did not know was all related. Symptoms depend on what size the tumor is and exactly where it is. Mine is at the base of my skull leaning on my jugular but not enough to impede blood flow. It’s right on my 12th cranial nerve that controls my tongue and the 7th and 8th nerves that controls the ear and facial muscles. I go for my 6 week post op for Gamma Knife surgery tomorrow. Symptoms do get worse before they get better from Gamma due to the tumor swells before it starts to shrink. That is why they can only use it on smaller tumors. I do have a little more symptoms like the swallowing issue happens more often and my right arm tends to shake sometimes. I’ve gotten more headaches but I can’t tell if it’s from allergies or the tumor. My ear still rings loud but I’m learning if I control the stress in my life it tends to be quieter. My biggest issue now is fatigue. I can go from 60 to 0 in nothing flat with no warning! From what I’ve read, tumors may not shrink noticeably for up to 2 years after radiation so I stopped checking my tongue everyday for change.

  251. Robin please keep updating us on your progress. I am oping that the doctors feel that the gamma knife is the right treatment for me. I know all of these brave souls have endured thhese 10 hour plus surgeries but I am very nervous about it. I feel silly saying that when I read the other Linda on this blog has had 3 of these tumors. Linda you have been through so much, you are often in my thoughts.

    Linda H

    PS My GP put me on 2 courses of antibiotics for an ear infection too before she decided it must be something else and sent me to an ENT.

  252. Hi everyone. I’m the new kid. About to turn 51 so I’m hardly a kid but new to this experience. I was diagnosed March 23. I had persistent hoarseness in February – I teach second grade in Brooklyn, NY so I have had that before but this time it felt different, literally I opened my mouth and nothing came out. I went to an ENT on March 21 and he suspected glomus – my right vocal chord was paralyzed and he could see a red mass in my right ear (where I have had pulsatile tinnitus for a couple of years). On the 23rd, I had an MRI and, well, you all know the rest of the story. He said he had only seen one other glomus jugulare in 25 years of practicing medicine.

    Went for some other tests, to make sure no malignancy and no others hanging around. Now that that is all done, getting ready to make a treatment decision. My father is a retired physician and has been all over this, researching. I am blessed with my support system – my mother, boyfriend, stepmother, brother (also a doctor) and his family and my other brother (a paramedic), my friends and my co-workers. I loved Dan’s words about calling upon one’s “prayer warriors” – I am more spiritual than religious myself but do have a multicultural force of said warriors whose love and support I am surrounded by.

    Trying to maintain my normal schedule; we are getting into the last 10 weeks of the school year which can seem like a runaway train at times. But I have to say, tough to run a noisy classroom with only half a voice. (Dan, I cannot imaging being a principal with half a voice.) Enjoying the beautiful spring in New York City. At this time, my symptoms are mainly the pulsing, the loss of the vocal chord, and a slight conductive hearing loss in the right ear, all of which I can manage. I find I am more careful about swallowing but I wouldn’t say I am having real difficulties there at this time. Last week, I did notice a bit of clumsy tongue (I’d had the sensation that I had burned my tongue over the last two weeks or so and then it seemed I started slurring my words – without even enjoying a cocktail). My doctor noticed my tongue also deviated to the right now so I’ve been put on a ten day course of steriods to see if that has any effect. The only effect I feel so far is that I am hungry all the time.

    I have been consulting with a cranial base surgeon at Lenox Hill Hospital who works in conjunction with a neurosurgeon/Gamma Knife man at New York-Presbyterian Hospital. We have talked about both debulking the tumor and radiation and also about just the radiation. I think I’m more scared of the radiation – something about screwing that frame into my forehead and the side effects being unknown and spread out over a period of time – but as my dad said, “if you can avoid having someone digging around in the back of your head for 10 hours, we should consider the alternative.” As a former physician, he is most worried about all the stuff that can go wrong in the hospital AFTER the surgery.

    I have read all of your stories with great interest. While we all share a cluster of symptoms, the individual experiences vary greatly, the challenges, the recoveries, the new “normals”. Robin, I am particularly interested in what happens with your Gamma Knife treatment and follow-up since that might be where I am headed. Am also considering going down to Johns Hopkins for a consult with a doctor who recently published a study on the effectiveness of Gamma Knife.

    I keep having these dreams about preparing to go on a long trip, with baggage packed, at an airport or train station. Other people I know are there with me but it is clear that I am going alone. Having this to read has been an invaluable resource, to know that I am not alone, that there are other travellers out there with me as we go along this road, wherever it leads.

    1. Welcome new kid on the block. We are a small very exclusive club. I cannot tell you how much you will be helped from finding this.
      I had my surgery at Lenox Hill in November by Dr. Gady Har-El (head & neck) and Dr. Darius Kohan (ENT neurosurgeon). Dr. Vitek was the neuroradiologist. They were magicians. Your father is right to worry about after surgery issues, but you will be out of the hospital before you can even stand straight. I had the 10 1/2 hour surgery on Tuesday and the surgeon wanted me out on Wednesday night, but I foolishly decided to stay until morning because I live alone. I would have been better off alone. The next night I had someone stay just for safety, but I was up and moving, though slowly. My tumor was egg sized and ran from the jugular up through the ear canal. It was twisted around a lot of stuff. There are just so many nerves in the temporal lobe. My only significant after effects are pain and some loss of range of motion in my shoulder (the 7th nerve was disturbed and may come back), a metallic taste, some hoarseness if I raise my voice, numbness on the side of my face and behind my ear. I am tired a lot. All things considered, I am pretty fortunate.
      All of these doctors are on line. They are easy to communicate with and compassionate. Dr. Har-El is not that difficult to get an appointment with. Dr. Kohan, the real star of the group, a bit more difficult, but if you see Har-El first, he will set up the appointment if you have a problem.
      Stay with this blog. We need and support each other. If you have any questions, just holler.
      Claire

  253. Linda H – my tumor was 1.5cm and gamma knife seemed so much easier to me because they told me just opening my skull could cause nerve issues. They said I would probably lose hearing in my right ear, have a trachea and feeding tube and my face would probably droop. That scared me to death to go from healthy, seemingly small symptoms, to potentially being disabled. Although it has been encouraging to read all the stories here of people opting for the full surgery and not having the issues they said I would have. The halo wasn’t as bad as expected with gamma knife. They gave me a Xanax so I basically slept through most of it. I was fortunate that my GP knew to look further for my tongue issue. I thought it was a reaction to my athsma medication. Looking back though, I think I had symptoms over a year ago and just didn’t pay attention because they were small and would go away. One ironic thing was my 15 year old daughter shadowed doctors at the local cancer institute last summer. She went with me to the gamma knife surgery and had asked me did I ask the doctors what could go wrong with the radiation treatment. I told her no, I’d rather not know everything that could go wrong – I just wanted to keep a postive outlook that everything was going to be alright.

  254. Thank you for honest assessment of your ordeal. I will let you know what the doctors tell me on the 7th. I am hoping for gamma knife but time will tell.

    And Laura B. I am so glad you found us. This is so nerve racking to do on ones own.

    Let’s keep our spirits up,

    Linda H.

  255. I had my 6-wk post Gamma Knife appointment today. It was just a quick appt to go over my symptoms. The doctor wasn’t concerned with my few increased symptoms but set another appt in 6 more weeks. I will have a follow-up MRI in September. He said he didn’t want to put me on steriods yet because of the side effects.

    Laura B – don’t let the halo sway your decision. I had a lot of anxiety heading into it but it wasn’t that bad. They put topical cream on my skin to deaden it and then had two rounds of injections at the 4 sights. I only slighly felt the first round and it wasn’t more than the dentist giving a shot. The Xanax made me sleep throught the MRI and the radiation itself. I got to the hospital at 7:30am and was home by noon. Recover was much easier since I was able to wake up, eat some graham crackers and orange juice and then go home. I slept most of that first day. I did have a stiff neck and slight headaches in the couple days after. The holes healed up fine and you can’t even see where they were.

    In the beginning I tried to find information on the internet but quickly learned not to read everything. I first looked for the date of publication after I read one site that talked about high morbidity/mortality rates with a glomus jugulare tumor. Then I realized it was from 1993. Great strides have been made since then with this type of tumor.

  256. I saw a neurologist yesterday. She is leaning toward a diagnosis of an Acoustic Neuroma. UGHS. What are the chances of someone having a one in 1.3 million chance glomus jugulare tumor the size of a lemon, and then 24-1/2 years later get diagnosed with one of these?! You would think that one or the other would be more than anyone can handle. I am a radio news director so research is easy – but after reading a couple of sites I have decided to bury my head in the sand for a few days. I have an MRI on Wednesday. At 46, another surgery even remotely close to what I had done at age 21 will be tough. I am scared and sad. But I guess that is par for the course when it comes to these types of things. 🙁

  257. Hey Robin. Glad to hear your check-up went well and that they are not putting you on steroids. I am on them this week to try to resolve a tongue issue and I am eating every two hours like a newborn. Will be glad when I am done on Monday.

    Thanks too for the encouraging words about the Gamma Knife and the halo. I won’t let it stop me and I’ll happily take every sedative and pain killer that comes my way. I actually found a you tube video that showed someone having the frame attached and watched some of it last night. I do know what you mean about reading too much of the stuff on the internet. The night I was diagnosed, I read until I was sick to my stomach. Now I know when to get up and shut the computer off.

    Did they talk to you at all about long term effects of Gamma Knife? I understand the short term stuff but I wonder if I have GK, will I wake up in 20 years and not remember my name one day. Of course, in 20 years I”ll be 71 and maybe that was in the cards for me then anyway… There just doesn’t seem to be a whole lot of information out there on the long term effects, if there are any, for people who have been treated for glomus jugulare.

    Mia, sorry to hear you are possibly experiencing another rare tumor situation. Does it have to be surgery? Or could you be a radiation candidate?

    Happy Weekend everyone.

  258. Laura B – you are welcome. What issues are you having with your tongue? The right side of my tongue is atrophied and almost looks like a brain. My neurosurgeon said it might not go back to normal due to the amount of damage. I can’t roll my tongue over or whistle anymore but I’m fine with that. I just have to be careful swallowing and not talk to people directly becaue I might accidentally spit on them! It’s ok though because I look at it as my badge of honor of surviving something so rare and scary. The hospital gave me a Gecko lapel pin for graduating from the Gamma Knife Center of Oregon (GKCO).

    My husband and I talked to the radiologist at length about the radiation. My husband was in the military and had to work on nuclear weapons so he was curious, too. The Dr said there is radiation in almost everything (even the coffee my husband was drinking) and that people are actually healthy being exposed to some radiation than none. The Gamma Knife surgery I had was on a machine called Perfexion. The technology has made such great strides that the accuracy of the radiation beam is within 1 ml of the target so it doesn’t damage surrounding tissue. He did say if my tumor came back I would have to do the other radiation that is given over 5 days a week for 6 weeks. If it should come back after that the 3rd option would be a craniotomy.

    Mia- here is an encouraging story regarding an accoustic neuroma. The doctor that performed the surgery was one that I had for Gamma Knife.

    http://www.providencefoundations.org/foundations/our-stories/patient-stories/Documents/os-science-healing-toner.pdf

    Reading this story help me to make my decision. I really wish the medical field could find a reason that causes these tumors. I feel helpless in not knowing and that maybe I could change something to prevent them in the future. My local chapter of the National Brain Tumor Society is having a benefit walk this summer. I think I’ll participate to feel like I’m doing something postive for the cause that can someday make our group a very elite group of the past.

    1. Robin
      You are one of the reasons we are here on this blog. We all have different size tumors, different symptoms, different approaches to removal etc. But we are all pretty much in the dark and need each other to find out what is out there for us and then compare notes. I never knew that there was a National Brain Tumor Society. I am feeling at quite a loss these days and will look into finding a local chapter and maybe I can find a niche for myself. Thanks
      Claire

      1. Thanks Robin and Claire. We are all we got especially based on my experience with what is now 22 doctors they all seemed to not understand. Mia, I hope everything turns out okay as acoustic neuromas are another misunderstood tumor. The actor, Mark Ruffalo from the new Avengers movie had an acoustic neuroma removed and had a lot of therapy, but the actor says he is near 100%. Question, is there anyone in the New York area know a good neurologist or an ENT? I feel my hearing has dropped and my pain was so bad that it felt like I was just operated on.

        1. Lilly:
          In NYC, Dr. Darius Kohan is a magician. He was part of the team who removed my egg sized tumor. He is a specialist’s specialist. He has a Park Avenue office that is near impossible to get an appointment at. If you don’t care, he also has an office in Brooklyn. The area is a transitional one, but not unsafe. It is in the Brooklyn Hospital building which is not very nice, but my attitude is that I am seeing him, not the office or building. He has what he needs there. He is apologetic for the surroundings which I find ridiculous. You can look him up. He saved my life. He has a bit of an ego and will tell you that he is one of a few who know what this is, and what to do about it. He does and did. He saved my facial muscle etc. Let me know. I will be seeing him this week for another follow up. He is still optimistic that my hearing will improve. It has been 5 months. He appears to be kind and caring beyond the ego. Am here for any questions. You can Google him. Claire

  259. Hi Claire – I didn’t know there was a National Brain Tumor Society either until I started looking for information on my tumor. May is National Brain Tumor month. This link shows some ways to get involved.

    http://www.braintumor.org/BTAM

    It seems like there is a lot of information on cancerous tumors and not so much on benign tumors and escpecially not so much on glomus tumors. I think by getting involved we can not only help raise money to find a cure or maybe the cause to seek prevention but make our tumor more visible to society to provide help for those reluctantly nominated into this club. I think it can help the hopelessness felt when one is diagnosed.

  260. Good Morning,
    Sometimes I think back to that time when I was a kid not feeling well and home from school. It may have been the flu, an earache or perhaps a stomach virus. There was always that day when I really started to feel bettter and being home from school became fun. I felt well enough to play games and run around a little if mom let me. I knew it was my last day home before returning to school; however, I felt better and it was fun to be home with Mom.
    It’s been thirteen months since my surgery and while I’ve been back to school (work) for ten months, I’m still waiting for that day when I feel well enough to play games and run around a little.

    1. Dan–I am 5 months out and still wondering when I will be me. I know exactly what you are saying. I understand intellectually that I am one of the lucky ones, but emotionally I am having difficulty. I think we need to focus on positive things and just try to accomplish one more thing each day. To think of the things we used to do, things we want to do–it’s just too daunting. One thing at a time. It sounds silly and almost condescending, but we have to be grateful for what we have. The alternative was worse.
      Claire

  261. Thanks Dan and Claire. I noticed I was almost going into a depression because of guilt of not getting things done that I used to. It’s been hard working full time and trying to raise a teenager all the while dealing with my health issues. I finally decided that I will get done what I absolutely have to and the rest can wait until I feel like it. I spent the day yesterday watching my daughter and her lacrosse team win their game, then spent some time next door playing with my neighbor’s babies on the floor, then made some popcorn and watched a movie. I didn’t do much but thought I really enoyed the little things. Today, I’ll get my laundry done one load at a time. I was telling my neighbor about the neurosurgeon saying my tongue may not go back to normal. Her 3 year old hugged me and said, “You are normal”. I laughed and thought this is my new normal and I should be happy because I could be a lot worse.

  262. Hello
    Thank you all so much for making me feel so welcome I went to get the MRI and the MRA scans last week and got the results the next day as the ENT specialist who ordered them is in the same complex however they are now saying 3 months after the first CT scan they can’t see it so well any more ;-( at this stage I don’t know whether to laugh or cry with joy or be even more scared as I find it hard to believe that I can be diagnosed with such a rare nurological tumour then for it to just to not be as visible anymore after 12 weeks!
    The ENT specialist is doing a hearing test tomorrow then sending everything and me to Shands in Gainsville to be seen by the specialist there.
    I don’t know what to think or believe I’m very confused with the whole process has this happened to anyone else?
    I have you all in my thoughts every day …
    Fiona …

    1. Fiona–
      Try to get to a teaching hospital if you can. Since this is so rare, you need to see someone who is able to give you accurate MRI/MRA readings. If you are questioning your team now, it will not get easier. You have to find people who make all of you feel better. We are all with you here. We all know the uncertainties. But you must find people who make you feel like they are with you, not confused themselves.
      Claire

      1. Hello Everyone

        Ok well I’ve had my hearing test today I’m slightly deaf in my right ear probably why I jump out of my skin at my place of work when someone comes up behind me unanounced.
        I clearly don’t hear them but thought I was just deep in customer stuff 😉 My work colleagues have been very kind and sweet to buy me plants and flowers.
        I realize this is just the start of a very long haul and I’m sure they will tire of the situation the longer it goes on, my boss found a very interesting procedure where the powers that be go in through your nose ? And suggested I could be back at work in 2 days !!
        After the hearing test I was informed that all the results bad and not so bad to slightly deaf in your right ear will be sent to Shands in Gainsville Florida, apparently it’s one of the best if not the best nurological hospitals in the Country or so Im assured by my work collegues I’m sure the specialists will look over everything with me.
        I’m perplexed don’t fully understand everything and wonder how hard it must be to be told you have Cancer and only a few months to live coz this feels hideous to me ;-( I’m so grateful to you all for your thoughts, advice and incredible support.
        I will let you know what happens next in this strange journey I’ve been sent on without my full consent I have to admit! I just want you all to know I’m thinking of you all not just me…

        Fiona T

        1. Fiona
          Am so glad that you have found more specialized place to go and not stuck with a doctor with a big ego and little skill. You are in their hands, but you have control. Ask a million questions. From all we have said here you must have them by now. They might be able to answer some, others not so much. Know we are all with you and we are all plodding along and getting better every day. We all have days we feel sorry for ourselves. We all have people who have lost interest in our plight people who lose patience, but they don’t matter. Only you matter now. Go girl!

  263. Re support – the first thing the ENT and neurosurgeon told me was that I did not have a brain tumour but a skull-based tumour. My critical insurance policy stated that they would not pay out for a skull-based tumour but I got the money no questions asked when I sent in the medical reports. Needless to say I was a bit confused! Contacted the Brain Tumour Foundation (live in Canada) and read their literature – the tumour was included with only a small bit of information. I decided to attend their monthly support sessions – this was a life saver for me emotionally. Many of the symptoms, tests and treatments are the same as what other members have experienced so I have someone to relate to, to ask questions of and know that I am not alone in this battle. Just completed a 2.5 km walk for them last weekend to help them in their efforts to raise $ to keep the literature and support in place. I call myself an ‘adherent’ to their group!

  264. Fiona,
    As a survivor of 2 surgeries for this thing and now living with my 3rd I agree totally with Claire. If you have any doubts about your care now find another doctor. You must find someone you trust with everything you have. I’m not sure where you are but I went to Nashville TN for my 2nd surgery which was recommended by the team that did my first surgery. There phone # is 615-284-4444. They have a team consisting of drs from Baptist and Vanderbilt that they use. I would not wait for this thing to grow any more. Good luck and thinking about you. I understand the feelings that you have but please find help asap.

  265. Fiona: Claire and Linda are right if you have any doubts please, please look into other options that will make you feel comfortable. I have experienced this myself with not being with the right team of doctors and then dealing with the aftermath. I be brief here since it is somewhere in one my earlier comments but first surgery went all wrong. The doctor assured me that I had ear polyps and cholesteatoma. My surgery was supposed to be a “piece of cake” and he does this type of surgey 4 to five times a week. I went back to my local old doctor who had referred me to this doctor’s hospital and my local old doctor said please ask the doctor because he believed the surgery was complicated. I asked the surgeon if he was sure that it was a “piece of cake. The surgeon replied that the hospital “would take good care of me” and I would be back to work in 2 days. During the surgery, the surgeon found my glomus tumor and it went downhill from there. I was tossed from doctor to doctor at the hospital without any explaination and I could reach the surgeon to ask why he kept referring me to other department. I sunk into a deep depression because that surgeon was my 6th doctor at that time. I didn’t know what to do. Luckily I lived through it but it is still a struggle everyday.
    If there is doubt in your gut, please please seek help elsewhere. Trust your intution. May the Lord be with you. I will be praying for you.

  266. Hey All. The computer was doing a lot of reading on the recent NFL draft this weekend so I was out of touch but did read your comments. Any football fans out there? Typing this stuff on a smart phone is no fun.

    Robin – my tongue issue was it being “clumsy” – feels like it is burnt on one side and feels sluggish when I talk, my diction is not as clear. Done with the steroids and I think they helped, speech felt better last week but as I was coming down off the drugs, I could feel it lapse back Friday and Saturday. I can still whistle and roll my tongue and now I keep doing it, trying to keep the muscle memory in shape. I think NY-Presbyterian has the same Gamma Knife. I thought it was interesting that your doctor mentioned conventional radiation if you have to do it again – the neurosurgeon I spoke to said glomus tumors didn’t really respond to that. Did your doctor tell you why he thought conventional radiation therapy might work?

    Are we classified as “brain tumors”? I thought we were “skull-base tumors”? I guess we are so rare that they are just using brain tumor therapies for us but I’m not sure what we are. I will check out the brain tumor society. I wonder if there is a similar society or association for skull base tumors.

    Dan and Claire – I’m interested in your experiences and trying to understand them as I get closer to making a decision about my own treatment. Do you think that the treatments made your symptoms and quality of life worse? Or is part of the recovery process readjusting our view of ourselves, accepting possible limitations, recognizing our “new normals”? The recovery period is sounding like more than a year, at least, probably closer to two. This also seems to be hitting many of us at a time when our bodies are beginning to age and we are also getting used to “new normals” there as well. So this is just one more thing to get used to, as I get ready to turn 51, along with morning aches and pains and me having to get my first real pair of eyeglasses, not just readers. (The guy at the DMV frowned at me last week but I passed.)

    I think we have to be kind to ourselves, allow ourselves time and space to re-negotiate our new bodies. Forgive ourselves if we can’t get it all done. Accept help from others if it really helps. Mourn our losses (no, I’m not going to die but I can’t really sing anymore and I used to love to sing along to music) and figure out how to compensate. Or find new victories. I’m awaiting a delivery of a personal amplification system, so I can use it in the classroom. I have been teaching second grade with one vocal chord since February and let me tell you, it has been a challenge. So we’ll try it and see if it helps – teachers and administrators use their voices all the time in many different ways. My chord may or may not come back, but it won’t be for a long time if it does and I have to be able to survive the next few weeks and plan for returning to work in September.

    Dan, are you almost done with school? Do they end early in the south? We go through till the end of June. The physical demands of being in – and running – a school cannot have made your recovery any easier. While there are joys that come from being around our students everyday, having to give of ourselves – at a time when we ourselves may need to be doing a little taking or at least resting – may be delaying some of your feeling well enough to run around and play games yourself at this time.

    More later.

  267. Fiona – I agree with the others. GET THEE TO A TEACHING HOSPITAL. You will find this difficult enough to deal with because of the rarity and many people haven’t seen it or don’t know it enough. My original ENT knew what it was but had only seen one other one in 25 years of practice in New York City. You will stand the best chance at a hospital who has imaging capability and more than just one or two doctors to talk about it. You might need information from a neurosurgeon, skull-base surgeon and radiation oncologist or brain tumor center to name a few.

    Gainesville – are you in Florida? Check out the medical schools/teaching hospitals there. Is Shands one? Have a look at the programs at Duke, MD Anderson in Texas, University of Pittsburgh. Check out their information online. Find out the best teaching hospital in Florida. You don’t want one guy with a CT scan. You want a team. If you have a glomus tumor, it isn’t going anywhere. Find yourself a team of people who know what they are doing. It will be tricky enough with them. It will be impossible to manage without. Keep us informed.

  268. Did any of you guys have a collagen injection to move your nonfunctional vocal chord closer to the working vocal chord? I am meeting with an Otolarg. Dr. Tomorrow. The surgeon that took out the tumor would prefer I not do it.. Later, have it done permanately. Any thoughts? I am getting depressed that I hardly have any voice!,
    Thanks,
    Sue

  269. Sue,
    I actually had it done three times prior to a more permanent solution completed three months post-tumor surgery. A couple months prior to surgery I had the injection done for the first time. It was done in the clinic and was real strange and not particularly pleasant. The result was real good for about 6 weeks or so, then I pretty quickly reverted back to a real hoarse, low voice. The second and third injections did not work nearly as well. There was marginal improvement in my voice. I did have a little difficulty from the second injection. Some of the collagen-like material migrated extending my cord. This resulted in a sore throat that required additional surgery to resolve. Not a big deal; just one more thing to deal with. Eventually, I had nerve innervation surgery to permamently improve the muscle tone near the cord. This has helped and today my voice has improved. It’s not great, but it is better than it was.

  270. Thanks so much, Dan. I think I will wait until after the 3 rd month. Then, I will have it done permanently. A friend has given me the name of a voice coach here in Raleigh. The voice coach helped singers on broadway. i will let you know if it helps.
    Thanks,
    Sue

  271. Laura B – I think my doctor was going from a point of view that he doubted I would need a second procedure because less than 5% have a recurrence. He only said regular radiation after I as what if I’m in that 5%. Gamma knife has a higher dose of radiation that is more pinpointed but can only be done once. Regular radiation is lower doses over a longer period but cannot pinpoint as precisely. All 3 neurosurgeons felt a craniotomy was too risky and would only be last case scenario.

    A glomus tumor is a skull-based tumor. My doctor explained the tumor is between the skull and the brain. It does not actually penetrate the brain but pushes on the brain as it grows because there is no where else for it to go. I don’t know why but that gave me some reassurance when I first found out I had a tumor. I think we get lumped in with brain tumor because the procedures to correct are the same.

    I was reading on the National Brain Tumor Society website today about how to deal with after effects. One thing I read that I hadn’t figured out for myself was fatigue could not be cured with sleep. I was wondering why on some days even, after I’ve slept for 8+ hours, that I still felt like I was walking in quick sand. I think understanding that has helped to reverse the depression that was setting in from not being so active.

    One of my long time customer’s wife was just diagnosed with a brain tumor and will be having surgery on the 15th. I told him the most important thing to remember is her old normal is no longer normal and her new normal will take a while to get used to.

    Robin

    Robin

    1. Boy we are all so active today. I check twice a day now. I need all of your support to badly. I really have a feeling of isolation. Robin, I checked the National Brain Tumor Society and could not find anything on gj, or the Monster as I like to call it. Where exactly did you look? I really am glad that you validated my fatigue. I am exhausted ALL the time and everyone thinks I am just feeling sorry for myself. I don’t want to lay around all day. Really I don’t. Of course the fact that I can’t sleep doesn’t help. I was ready to go to my internist to talk to him about antidepressants. Misery does want company.
      To everyone who wants to know, my head and neck surgeon and his team felt that traditional surgery with todays advanced images and advance embolization procedures were the way to go for my egg sized tumor. They felt they would leave anything that would compromise critical nerves and then do base line CT (next week) and then follow up with another next year. At that time, the decision for radiation will be made. They did leave 3% , but hope that with the disruption of the blood supply, the vessels may just dissipate. Pray for that. Then nothing will have to be done.
      I have full faith in them and again beg Fiona to find a team that knows about this and has seen this type My ENT neurologist says that there are only 10 of them who really specialize. Like I said before, we need each other because we are so scattered it’s nice to know that there are problems common to all of us in various degrees. Vocal cords, shoulders, facial nerves, fatigue. Do any of you have twitching in your face or arms? Does that mean the synapses are firing? Does the pain go away?
      Keep it flowing.
      Claire

  272. I am curious about something. When I had my lemon-sized glomus jugulare removed at the University of Washington in October of 1987 (I was 21), Dr. Robert Dobie told me that the tumor had been in there for about 10 years and asked if I recall hitting my head 10 years prior. In fact, yes I did. I was pushed down on the frozen playground at my grade school in Walla Walla and it resulted in a slight concussion and an awful headache. He told me that is likely what caused the tumor to start. Does anyone else recall ever hitting their head in the years prior to being diagnoses with a glomus tumor? Meanwhile, my MRI is tomorrow to determine what is going on in the last few months. This whole head ringing, pain, and spasms have got to stop. They are driving me bonkers! I am praying the neurologist is way off track in thinking it could be an Acoustic Neuroma. Having one rare tumor in my lifetime is more than any one person deserves. Wishing you all the best!

  273. Mia. My surgeon told me that my tumor was “ten years in the making.” I do recall hitting my head pretty bad on a freshly mopped floor but I would think(this my guess) that they would have found the tumor when I had my first surgery for a smaller tumor behind my ear drum and cyst sticking out from the side of my head. I also had the neighborhood bullies I am also dealing with the spasms and it scared the vice president of my divinson so much that he called 911. The spasms I can describe as having a charlie horse in my head. I wish you luck Mia and if you need to reach to me, you can reach me on my blog. I am praying it is not acoustic neuroma.

    As for those who are saying they are experiencing fatigue, I too am very tired lately. It sometimes aggravates me because I don’t get as nearly enough of my writing and drawing done because I am always tired. The meds for the headaches may also be contributing to my tireness. But, my guess is because we were under anesthesia for long(7-20+ hours based on what I read on this blog) that may be contributing to the tireness. Plus most of us were under for the embolisation for several hours. Also, these are vascular tumors as well. I also have been reading about those with brain tumors and acoustic neuromas(but very little on Glomus tumors) people complain of tireness and dealing with the new normal after surgery. I think it has something to do with messing with the mechanics of the brain and the vascular system leading up to the brain.

    My therapist says I should turn my adventures with what is now 22 doctors and my blog into a book. I wish all of you the best.

  274. Sorry my rest of my sentence got cut off. But, my neighorhood bullies from childhood threw a large rock at me and the rock put a huge gash on my head.

  275. Mia
    No one asked me if I ever hit my head. I don’t have any recollections of anything that caused concusssion–but I come from a family that never goes to doctors, so I am sure if I had a bump my mom must have just said don’t go to sleep. I think they just don’t know and any info is another piece to try to squeeze into the puzzle.
    I feel for you. The not knowing is the worst. I can’t shake the depression. Knowing I have to go for a CT scan next week and then wait a YEAR until they do another one to compare things has me nuts. I am also having headaches. I have intermittent pulsing in my ear and my right side hearing is inconsistent. They tell me it’s too soon to know anything. But I can’t stand this. I know, I sound like a big baby. I am in awe of you have gone through this for some many years and now facing another hurdle. Thank you for your strength. It is inspiring.
    Claire

  276. Claire, I am sorry to pry but have you tried talking with a therapist. A therapist who specializes in post tramuatic stress disorder and people recovering from surgery or a disease. It is hard and you might have to try several people or pry into the therapist background but it does help especially with the anxiety of not knowing.

    1. Lily
      Every time I have ever gone to a therapist they just tell me to go out and have more fun. My life has been a series of one bad luck scenario after another, but until now my health has been pretty good. I will see my doc friend this week and see what he has to say. I will talk to him about yet another therapist. I really do try to pull myself out almost every day. Two weeks before I had my surgery I lost my mother. It was her time and she was 97 and more than ready. I was ready for it too, since she had really left 8 years ago. But I have a house full of stuff to go through and the task is rather daunting.
      BUT, I do have good news. I saw the ENT neurologist today. My hearing in the right ear is only 25% less than the good ear. He said to try antihistamines for a bit (allergy season bad) and if I am still bothered by the difference–it does drive me nuttier every day–he would authorize a new fangled hearing device. The audiologist thought I should go that route even before I saw the doctor. He also gave me the okay to see my dermatologist to see about releasing the scar tissue that is pulling behind my ear AND I don’t have to see him for a year. So it’s good.

  277. I guess you don’t know just how strong you are until you have to deal with another big thing. I am tired of trying to be strong all the time, though. But then again – what choice do any of us have? I can’t get any of my family or friends to understand not only what I went through 24-1/2 years ago, but what I have been going through over the last few months. So I hide most of it because I don’t want to sound like a whiner or a baby. I am news director for some radio stations in southeast Washington State and the ringing in my head and pain have really affected my drive to dig up the stories like I used to. I noticed my voice is getting weaker, my concentration level is reduced, and I am much more tired than usual. I also have four bad disks in the low back and four bad disks in my neck they want to fuse. I am 46 and often feel like “IS THIS ALL THERE IS?! IT IS NOT FAIR!!” I am so thankful to have each of you who know what it feels like. Because no one else understands. Not my family, my friends, or my doctors. If you are on Facebook, please send me a friend request. https://www.facebook.com/mia.simpson2
    Sending good thoughts and prayers to each of you!!

  278. I don’t have much time right now but I have found information on the internet regarding symptoms of glomus tumors and after effects of surgery. The doctors also say tumors are not caused by injuries but they don’t know what causes them. There are some links to genes that make people more susceptible. Some think they could be a mishap from birth. I think the environment has a lot to do with it. There are I was in the emergency room with my daughter until 2am because she was hit in the head with a lacrosse ball in practice and started having blurry vision and a headache. The doctor said he didn’t think her issues were from being hit because she said it wasn’t very hard and issues didn’t start until later. I told him I had a brain tumor and he asked what type. After I told him a glomus jugulare he decided to order an MRI. Fortunately, it came out clear and they think she just had a migraine. She’s 15 so her hormones are probably going crazy. That was a scary few hours waiting for the results. I kept trying to not be on the edge of panic and telling myself it would be normal. But then the ittle voice in my head kept reminding me that I didn’t think anything would be found on my MRI either. Goes to show they really don’t know what causes brain tumors.

  279. Hey Everyone,
    I found myself at Duke Urgent Care this morning feeling pretty yucky. You know, headache, runny nose, chest congestion, mild sore throat and a general malaise. As suspected, I have an upper respiratory infection. I got a Z-pak and an inhaler and was on my way. I did pause to reflect that God does have a sense of humor. Despite it all, life goes on. Friends marry, kids graduate, teams win and lose and we still get those stinking colds! Pause to give thanks for today and make tomorrow even better. I thank God for all of you.

  280. I have been wondering about the heridity factor of this type of tumor. My father died in 1983 of heart problems. He too, had a hearing problem but only in one ear. I often wonder if he had a glomus tumor that went undiagnosed. I guess I will never know.

    I will finally get to see the surgeons in Halifax on Monday (teaching hospital).

    I have been following all of your post and find it such a comfort to know that we are all rooting for each other. It is a blessing. Thank you Mandy Jones for creating this blog.

    Linda H

    Linda H.

  281. Hi Laura B.,
    My school is a private, tuition-free middle school for boys. 80% of our families qualify for free or reduced meals; we serve the underserved. We are small and will graduate 13 eighth graders on June 1st. All have been accepted and will enroll in private college-prep high schools in the fall; some in local day schools, about half are off to boarding schools throughout the eastern U.S. They are great young men. With my compromised voice, what is most frustrating and challenging for me is my inability to freely communicate with them. I miss being able to talk with them and at times over them. I have to pick my spots. One of my therapists early on suggested I try amplification. If I were in a classroom setting, I suppose I would give it a go. My hat is off to you for hanging in with second graders. That’s one tough assignment. Teach’em up.

  282. Linda H – I had read an article on the internet (can’t find it now) that had said there might be a link for glomus tumors being hereditary but only males can pass it on. My great-grandfather on my dad’s side had a brain tumor but no one knows what kind. My father died at the age of 44 back in 1986 so I will never know if he had one formed or carried the gene. My older sister died of lung cancer at 43 in 2006. I’ve had 4 surgeries in less than 3 years. The first two were lithotripsy for chronic kidney stones. I was finally tested and can’t eat chocolate or peanuts anymore 🙁 Then I had a hysterectomy for adenomyosis and endometriosis. I’ only 46 and these things usually affect people older than that. Funny I had 6 weeks off work for the hysterectomy but only a day for Gamma Knife. I also have athsma and have to take a daily inhaler. That’s why I think the environment has something to do with a brain tumor. My cells seem to go crazy and creates things like stones and tumors. If I remotely smell cigarette smoke I can’t breathe.

    Dan – sorry to hear about the upper respiratory infection. They are very draining and hard to get rid of.

    Robin

  283. Hi. I am 48.. Here is my story. Back in 1998 I was told by my primary care Dr I had a “hematoma” behind my eardrum. He referred me to an ENT who could not do anything Finally I found a Dr at the UMDNJ. There I was told I had a glomus tympnicum She did a tympanoplasty and removed it. No problems. I always thought that the pulsating noise was normal. In fact we live on a dead end and I use to tell my husband it was so quiet I could hear my heart beat!! Here comes 2008. I start hearing the pulsating noise again.. Knew it was not a good thing. So made an appointment with a otology and neurotology Dr, He did the cat scan and found out this time I had a glomous tumor. He removed it by performing a mastoidectomy with tympanoplasty. Every thing went good. No problem No more noise. I would go for follow ups Last one was June 2011. So here comes February 14 2012. Out of no where the pulsating begins. Worse than ever. I was scared. On the 25th I finally told my husband. I got an appt On March 6. Went for MRI on 14th. The 27th of March I went to get results and the dr asked me if I was breathing and then told me I had a Glomus Jugulare Tumor. Explained everything to me about the surgery. Said radiation would be a better choice. Met with a radiation oncologist on April 3rd.. They made the mesh mask on the 10th and did another MRI and cat scan. I will be having Stereotactic Radiosurgery today, May 2nd, at 11am. I am scared. Worried about the long term side effects. I know you shouldnot read everything you see on the internet. I have been reading this blog for a couple weeks now. It has been very helpful. Please say a prayer for me.

  284. Dan,
    I hope you are feeling better soon! I have been told that these tumors are an enzyme or chromosome deficit. It is something we are born with, but not necessarily hereditary.
    The best to you all, Sue

  285. I have not spent much time thinking about the cause of my tumor. Not sure if it’s heredity, some sort of trauma or just happenstance. I do know that my sister had an Acoustic Neuroma a few years back. Come to think of it, if it’s hereditary and she some how passed it on to me genetically, that’s about the only thing she’s ever given me. Just kidding. Really, I’m just kidding.

  286. I would like to know a cause so that if it’s something I’m doing I can stop doing it – like my kidney stones!

  287. My research and conversations with doctors never mentioned anything about trauma as a cause.The research said only a “maybe” about genetic component and enzymatic secretions. Did any of you have kidney/adrenal issues? I was tested for those, but thank heavens there were none. We are just one weird bunch.
    Claire

  288. We are the chosen few. I keep saying I would have much rather won the lottery with 1 in 1.5 million odds!

  289. Lori–My thoughts are with you. May be radiologist’s had be guided by all the positive energy on the planet and your monster slain.
    Mia–Any news yet?

  290. I am praying for you Lori. Looks like you are in my area since you mentioned UMDNJ. I wish you the best. We are all here for you.

    I am scared myself now. I have a doctor’s appointment on May 18 with the neurologist then I have to hopped on a plane. I am scared that my ear problems will bother me on the flight. I went into the mountains in my area and felt the worst pain as I went into a higher elevation.

    1. No word yet. The MRI was yesterday early afternoon. I did get to look at it, but it is hard to tell what is what on it. When Dr. Robert Dobie did the surgery, he filled my area where the tumor was with fat (yup, I am a fathead) in order to keep the brain from settling. He said he couldn’t get all the tumor…that was 1987. I am praying like a crazy woman that it hasn’t re-grown, or that there is now an Acoustic Neuroma. It was so much easier to go through brain surgery when I was 21 – I didn’t have a family then! I know there are so many others who are so much worse off than me and I shouldn’t be asking, “WHY ME?!” But some days lately I can’t help it. I am 46 and have lived with not only that lemon-sized glomus jugulare and its post-surgery affects, but have had a bad back since 1993. Four disks in the neck need fusing and four disks in the low back are collapsing. Yet I keep going. I don’t know how. I guess that is all I know how to do, but family and friends just don’t realize how hard it is to be in this type of pain, live with this type of fear, etc. Over the last few months, it has gotten so much worse. The right side of my head feels like someone hit me with a baseball bat a few days ago and my entire head is ringing at 4 kHz (there are hearing tests on YouTube that I have had a couple of my family members listen to with headphones to get an idea of the ringing I live with. I am getting frustrated. I approach everything with a sense of humor, but lately it is getting harder. 🙁 I am so thankful that I have met each of you and know that I am not alone in this world. I wish I would have known you a long time ago!!

  291. Lori, I am interested in your comments about radiation therapy. My glomus tumor was treated with 28 fractionated radiation treatments over three years ago. I went to a radiation oncologist after the surgeon explained how difficult the surgery was, and I wanted a second opinion. He was sure it could be effectively treated that way instead of with surgery. I have an MRI every year, and so far, the tumor has shrunk slightly and thinned a bit. The radiologist said the goal was not to remove it but to keep it from growing, since I was having no symptoms except hearing loss and tinnitus. I no longer have the “heartbeat” in my ear, but do have the whooshing sound, which doesn’t bother me much. Maybe 10 years from now, if it starts to grow again, I will be sorry I didn’t have surgery, but right now I couldn’t be happier. I think everyone’s situation is different, depending on age, etc. and whether or not you have any more serious symptoms before treatment. I was 65 at the time of the radiation treatments.
    Good luck..I so enjoy reading about the experiences of everyone on this blog.
    Pat J.

  292. Lori – I’m sorry you’ve been inducted into our club but I’m glad you’re here to share your information. I’d be interested to know what type of Stereotactic Radiosurgery you are having.

    Mia – I know exactly how you feel about having a family and going through this. My first thoughts were of my daughter and praying for at leat 3 more years so that she would not be a minor and she wouldn’t have to live with her father. He’s not a good influence and it would ruin her world to have to live with him.

    I finally had a long talk with my husband. He kept minimalizing everything and I told him that it hurt my feelings and made it harder for me to deal with things. Just because he doesn’t see my tumor’s effects doesn’t mean they’ve gone away. Even on my good days I am always reminded that I have a tumor because my ear constantly rings. Some days fatigue hits me out of no where and I have to adjust my day’s plans accordingly. I half expected the doctor to have a magic wand to wave and make everything go away. It’s taken some time to learn that I wasn’t going back to normal right away, if even at all.

    1. It is truly amazing that we all feel the same way. I am single, but have friends and family I have always been there for. No one gets it. I was told only 3% of the tumor was left behind. Why is this thing banging away again? The fatigue is like a big, wet heavy blanket. I am fortunate in that I look the same, but everyone thinks I AM the same. I am not. I need a knee replacement badly. I can’t handle the thought of being any more incapacitated than I already am–even if it’s a means to an end to the pain. The thought of the hospital and rehab and anesthesia, no way, not now. I wish you could all come over for coffee (or tea or whatever) right now.

  293. Hey everybody. Another rainy day in the big apple. Hoping the Knicks can get themselves together in tonight’s playoff game.

    Spent the morning at NYU hospital having a consult and feel like I am finally moving in a direction. Was told by radiation oncologist and neurosurgeon NOT to have surgery, too much risk for permanent damage – voice, tongue, swallowing. (Dude, if the neurosurgeon says don’t operate, then you don’t operate.) Because of the size (about 2.5 x 3.5 cms) and especially the shape of the tumor (edges are ratty, not clearly defined, like they need a trim), they say I am not a candidate for gamma knife – it would either miss too much of the tumor or they would have to irradiate too much healthy tissue. (If the tumor was the shape of my hand and fingers, they would either irradiate only the central part of my hand – and the fingers might grow – or they would irradiate the spaces between my fingers, which are healthy tissue.) They didn’t recommend debulking and radiation because that would leave me with two sets of risks/complications to recover from.

    So it looks like we’re going to do external beam radiation, over the course of 30 days. Good rate of tumor control. Less risk of permanent nerve damage. Have appts for next week to check out a couple of radiation oncologists at two other places in city who have lots of experience with ext beam stuff. Hope to get started later this month – can do some end of year stuff at home – report cards and such. Will probably take the 30 days off, I have the time saved up and feel like I need to concentrate on my recovery. Would like to be around to end the school year with my students but even if I take off mid-May to mid=June, school doesn’t end til June 27 so I will have time to be with them.

    So Robin, looks like nothing gets bolted to my head. I do think there is some kind of mask situation that has to be created. It will be interesting and probably valuable for others for us to share our stories of the two different radiation experiences at about the same time.

    Dan – glad you just have a cold this week. Refreshing to have something that can be treated with rest and tea with ginger, honey, lemon (and maybe a little whiskey to help you sleep). No needles, tests, big meds. Your school sounds great, giving a chance to kids who don’t have many chances – my school is about 99% free lunch and I worry about what will happen to my students when they grow up. You should absolutely look into a personal amplification system. My dad picked up one for me from a local audio store (j and r music world, they are online). It’s a microphone that I can wear on my head that is attached to a small speaker I wear on a belt. Made a real difference in my classroom (the kids were mesmerized, they say I look like a pilot and sound like a computer, we started the day with a “soundcheck” where I say “soundcheck” then say everyone’s name and they say “check” to let me know they can hear me). I also didn’t feel as exhausted at the end of the day from straining my voice. I can faux modulate my voice by turning the volume control up and down. This system was $28 and comes with rechargable battery – which lasted the whole day. It is a Pyle Pro PWMA50. Look into it or something like it. I’m also thinking of maybe seeing a speech therapist over the summer to see if there are things I should/should not be doing to preseve the remaining chord and possibly vocal exercises like singers do to strengthen it.

    Funny that you all should be thinking of possible causes, I was wondering about head injuries myself, especially with all the recent press on athletes/head injuries recently. I did have one head injury when I was seven, hit my head on the corner of the wall, knocked myself out, 7 stitches. It was on the right side of my head but on my forehead. No big head trauma in the back of my head. My dad has had tinnitus on the left side for years, some neck and shoulder pain, they thought he had a brain tumor back in 1997 but the tests showed nothing. He is still a very active and vigorous 77. We’ve been thinking when my situation is resolved, we should get him an MRI, maybe it is a hereditary thing.

    Lori – how was your radiation? Gamma Knife? How are you feeling?

    Fiona, any updates?

    Robin, sorry to hear your daughter had an injury (my nephew is playing lacrosse for the first time this year). Glad it wasn’t serious and maybe only a migraine. I have had them off and on since my late 20s andI would say they were certainly hormone related in my case. They came steadily as part of the pms package every month. Now that I am peri-menopausal, they come at different times and sometimes are more severe but I can manage them with sleep or excedrin (if I am working).

    Fiona – how was Shands? Did they tell you anything useful? Or do you just have more questions?

    Weather supposed to clear up here tomorrow. Looking forward to some spring weather. Celebrating my birthday this weekend, lots of cakes.

  294. Lori B –

    My tumor is a about 1.5 cm with a weird little knobby thing sticking down. At first they were concerned that that part could be cancerous and might need surgery and then radiation but decided it wasn’t bif enough to worry about. Therefore I was a good candidate for gamma. That’s interesting they didn’t think gamma would work because of the tattered edges. My daughter had shadowed some doctors at Oregon Health Sciences University in the Knight Cancer Institute. I toured the facility with her on the first day with the director of the dept. He explained the beam radiation and showed us the behind the scenes jobs that the team does to cure people. We saw how the dosemetrists used 3-D computer programs to plan how the radiation will attack the tumor. Both beam and gamma radiations use dosemitrists in conjuction with the doctors to come up with plans. Gamma pinpoints up to 201 pinpoint beams in concentration where beam is not as concentrated and delivers lower doses radiation over time, rather than one dose. They fit a mast to your face especially for you and that will be bolted to the table during treatment.

    It’s my daughter’s first year of lacrosse to and she is the goalie. She started on jv but the varsity goalie was injured so she plays varsity now. I had migraines since my early 20’s and agree they were pms related. My daughter unfortunately started puberty at the age of 9 so I’m sure she inherited the pms issues. I went through a period just after having my daughter of no migraines but the came back. I’ve probably had 5 of them in the last 6 weeks. Excedrin Migraine works great if I catch it early enough. I think dehydration has set them off now. I find my tongue gets really dry and I need to drink a lot. If I don’t I get a migraine.

    I was thinking a speech therapist. Not because of my vocal cords but because my tongue doesn’t want to cooperate. Sometimes it feels like I’m trying to talk with a mouth full of something. Not to mention I tend to lisp when I talk too much and spit a lot more!

    Robin

  295. I go to see my otolaryngologist and speech therapist in the morning. I haven’t seen either one in months. Don’t expect much to come of it. I am looking forward to going to Starbuck’s located in the hospital following the visit. For those of you who struggle with swallowing issues and saliva , Starbuck’s chai latte’s will set you free. Well, perhaps I’m exagerating a bit. They are one of my daily repieves; seem to reduce the saliva, coughing, choking, etc. Perhaps it’s only in my head, but that’s ok too. I am now a Starbuck’s Gold Card member you know.

  296. Thank you Robin and Laura for the information on radiation. It will be great to go to my consult on Monday having that knowlege. My friend had radiation for an acoustic neuroma in February . I believe it was 10 minutes a day from Monday to Friday for 5 weeks. However she was told to take another 6 weeks off work because she would be exhausted. She is back to work now and I plan on having lunch with her soon, so she can tell me about her experience. My consult is with the same doctors she had.
    We live in a place that has a population of 60,00o – 70,000. What are the odds that I would have a glomus jugulare and she would have an acoustic neuroma and that we actually know each other. Dawn has been one of my sister’s best friends for the thirty years.

    Linda H

  297. Dan – I think white-iced-chocolate mocca frappucinos work great on tongue symptoms, too!

    When I first noticed this blog I saw a name that was familiar of Aaron DeLaTorre on postings. That’s not a very common name so I sent him an message via Facebook. Turns out he is someone that used to sit a few cubes away from me at work a couple years ago. So if the stats are correct of 1 in 1.5 million, what are the chances of not only two people having the same rare tumor in the same state with a population of 3.8 million being in the same building? I’ve worked in the same building for 11 years and not long before I started there was a Mattel toy factory close by that got their water from a water tower. A lot of the employees sued Mattel because they were getting cancer from the water. Makes me wonder if it could be in the ground water. Our building sits above a run off pond. There has also been some long time employees in my company that has recently died in their late forties and early fifties from cancer. I told HR of my concerns but no one does anything.

  298. Hello to everyone,
    Glad to see so many posts. Must be a talkative day for all of us. This site helps so much with knowledge,comparisons and experiences. I have been through everything but the Gamma Knife. Traditional radiation did not stop this thing from growing,my Dr. said it only made the surgery more difficult due to the scar tissue that forms.Concerning the voice I have an implant that pushes my right vocal chord over towards my left and my voice is not perfect but way above a whisper. Can’t sing but never could. Can I yell oh yeah. My voice is just a little sexier than before that’s what I tell myself anyway. I might be the only one who thinks so but I like my opinion. Keep being strong our “normal” together is going to get us through. I am so thankful for each of you sharing everything. I think this helps us all. Bless all of you and pray for those that join us.
    Linda

  299. Amen to all the prayers and for us to keep together through this “new normal” I applaud Mandy for being so heroic and showing hers scars and lettiing me know not to be afraid. I did buy a hair etension which I didn’t need and can’t even play around with because I can’t raise my arm up to put it in. I’ll just scare people with it. I applaud each of us for getting through, helping each other and bonding together. Keep it going. I need all of you. C

  300. Laura b
    Amazing how similar some of your experiences are to my situation. Dr’s would not operate nor do gamma due to size and location of the tumour (similar to yours in size). I too teach but had to leave work as Dr’s did a biopsy to confirm the type of tumour and to relieve pressure on cranial nerves – was experiencing significant facial palsy – prior to radiation. I was on steroids to control swelling pre and during radiation which added to the recovery time. Be prepared for some side effects from radiation and for tumour to possibly swell before it stops growing or hopefully, shrink. Ended up taking a year off work. Challenges post radiation included some slight issues with my swallow, continued deviation of my tongue and some slight difficulty with speech, balance issues and complete hearing loss in the right ear. Was in the process of gradually returning to work last Sept when I experienced complications of a csf leak believed to be caused by the tumour shrinking and pulling on the dura – headaches were extreme and lost a lot of weight due to vomiting and not eating/drinking. Drs can’t find the leak so can’t patch it so I’m in wait and watch mode. Things are improving but I am still off work. Take time to make sure that your body has healed before returning to work. My gp and radiologist indicated it could be anywhere from a year to 18 months for things to settle, my ENT said it could take up to 5 years for nerves to settle from all the trauma. Wasn’t expecting recovery to take this long – so out of character for me to do things slowly and rarely took sick days before this. I have learned patience!

    Re tumour type – is not a brain Tumour as it is not growing on the brain. But symptoms can be similar as it puts pressure on the brain / brain stem. So I go to a monthly meeting of our local brain Tumour support group – it is an opportunity to ask questions and talk so that I don’t burden family /friends and they ‘get it’. Many of the Drs, treatments and experiences are similar.

    All the best on your individual journeys!

  301. Hello,
    Thanks for all the prayers everyone!
    Robin: I had Stereotactic Radiosurgery using the Cyberknife done.
    Laura: Happy Birthday! Hope you enjoy you day!
    Lilly: I live in NJ.
    Will go for my 3rd treatment today. No side effects yet. Has anyone else here had the Cyberknife Stereotactic Surgery?

  302. its coming up to a year since my operation at addenbrookscambridge. i go for a check up end of this month.i have finished my 6 weeks radio therahpy now.im waiting to go and have a mri scan in october sometime to see how the treatment has worked.im feeling ok i still have numbness in side of haed near ear and my ear is still numb and sore.my taste buds are not back yet to normal and after i had operation the noise in my left ear had 70 per cent gone..but since i finished my radio theraphy the noise is come back again to how it was before operation,has anyone else had this,,,,,

  303. Tina –

    It could be your tumor has swelled from radiation before it will start shrinking. That could cause the nosie to come back.

    I had gamma knife 7 weeks ago and it seems like the noise is getting somewhat quieter but I think weather affects it. The nurse told me that weather affects it because it changes the pressure, just as blood pressure and body temp affects it as well.

    My problem the last few days has been swallowing food. I think I’m going to have to become a vegetarian because meat tends to get stuck. I think my tongue is not strong enough to move it down. My neighbor suggested I see an ear, nose, throat doctor but not sure what they would do. I think I’ll wait until my next check-up to see if things improve.

    It’s funny how we all have the same tumor but there seems to be so many different symptoms and so many different ways to treat them.

    Robin

  304. hi mandy jones im just wondering how u r now since your operation just over 3 years ago now..has all the numbness gone yet and are your taste buds back 2 normal..

  305. Good Morning. Thanks for the birthday wishes. Happy Cinco de Mayo and it’s also Derby Day.

    Liz, thank you for your information. That csf leak sounds ugly. Glad you are on the mend. I figure if I do the radiation late may/early june, I can rest all summer and hopefully will be able to return to work in September for real. I’ve been reading up on the side effects – did you have sore throat, mouth sores, skin problems at the site, changes in your taste sensation? Was your swallowing worse than what it was pre-treatment?

    Robin, I’ve been doing some reading and it seems that meat is the hardest to get down. Are you eating meat with gravy? That might help it go down easier. If not meat, make sure you are getting enough protein in an easier to swallow form – smoothies with milk, soy milk or and/yogurt, almond milk, peanut butter, buttermilk. Tofu (you can make an easy chocolate mousse out of silken tofu and melted chocolate), cottage cheese, any cheese, there’s that south beach diet recipe for a mocha dessert made with ricotta cheese. Maybe some beef or chicken broth. Scrambled eggs. Milk shakes. I think I got that information on a couple of cancer websites – since they have a whole lotta info on radiation.

    Get some rest and try to eat well. Good advice for all of us.

  306. Robin, I also wanted to tell you that you might want to see a speech therapist to help you with the swallowing issues. From what I have been reading, they can give you exercises or strategies to help you. You can also eat fish or beans – good protein and softer.

  307. Top of the Day to you all. Mia I hope all is well for you as well as everyone else. Well in efforts to try to get some help with my issues, I am planning to go viral. There has to be a doctor out there who not only can give me a correct diagnosis for my pain, headaches, ear drainage, head spasms(after first surgery), tinnutus(both ringing and pulsatile tinnitus) and severe ear aches but also will listen to me. Doctors have called me everything from lazy to crazy(before and after having the tumor removed) and the only thing that is making me crazy is some of the doctors I have encountered cavalier attitudes. I still can’t believe one doctor prescribed powerful meds and told me to see him in six months!!

    1. Lilly-
      I am so sorry you have encountered such awful people. My docs were good and had good bedside manners as well. I don’t have any major issues–some pulsatile tinnitis, arm, etc. but my biggest complaint is that I can’t get back to being me. I am so tired. I just get a shoulder shrug for that. It’s real, I know exactly what you are saying. I am not lazy, I just can’t move. I had my baseline CT scan with contrast today and now am completely zombied out. To wait for a year to see changes will be a challenge.
      Mia–Hope you have some resolution. I saw something on TV the other day about injections into back for disc problems. Do research before you have fusion. Dont be offended, too much Facebook for me to handle.
      Feel Good All.
      C

  308. One of the main reasons my back is so bad is because of those injections. Back in 1993 I was in a rear-end car accident. I went to a pain clinic and the anesthesiologist gave me over 400 trigger point injections of betamethasone mixed with an anesthetic. These were placed throughout my back, neck, head, and shoulders. Corticosteroids are not good for you…at least not with that many.

    As for my head situation, I am so extremely frustrated that the doctors got my MRI results last week and won’t tell me till Wednesday. I doubt that they show anything except scar tissue. I am losing all faith in the medical profession in this region. There is something seriously wrong. I am getting worse. Now there is pressure in my eyes, and the right side of my throat has a lot of pressure. It seriously feels like maybe something to do with the carotid artery. I was in the ER two months ago and no one is taking this whole head ringing, dizziness, pain, change in my personality (I used to have all the patience in the world but it has significantly changed…maybe due to pain and ringing), etc. I am getting worse by the week. I saw doctors for two years before they found a lemon-sized brain tumor that was in there for 10 years. UGH. 🙁 Just not a happy camper.

    1. I get you on that Mia and that is why I am going viral with this. I know about losing my patience. The doctor clicker is ticking and it is now up to 22. I wish you the best as well as everyone else. And I know about not be your old self again. My mother commented after my botched surgery that I went in the hospital as one person and came out a different person. I wish I was blessed with the right doctors with beside manner like you Claire. Good thing I am here. I pray every night that this will not happen to anyone else like the experiences I have gone through.

    2. Mia–Have some faith. You have your beautiful daughter, friends and all of us here rooting for you. I went to a dermatologist today who was kind and caring and injected the scar tissue behind my ear and that made a big difference. I have bonging and pressure, but don’t feel like I am wearing a hundred pound earring.
      The piece I saw on our local news (NYC) was either CBS, NBC or ABC. It was not about the corticosteriod injections of the past, but some new technique–not quite approved yet, but soon–which has shown to be quite effective in restoring damaged discs, especially AFTER people have not had success with fusion. The procedure is an injection of a gel which restored the disc in its natural position. No one I know who has had fusion has had lasting relief.
      Good luck with your results tomorrow.
      Smile. The personality is still in there. We just have the cranks right now.
      C

  309. Laura B

    The radiation was relatively painless at the time but there were some issues after the fact. It caused the tumour to swell – so experienced sore mouth (used meds to prevent thrush + kept in touch with my dentist), swallow issues (liquid and soft diet for a bit and still deal with this a bit today), permanent change in taste, tenderness of skin at site, and hair thinning and loss behind the ear (had radiation in March, was still losing hair in october). Also experienced double vision (stopped driving for a few months) and balance issues that resolved after several weeks. Was also on decadron so experienced side effects of it. Nausea was an issue for a bit. It took me longer to recover than I expected. Thing is that radiation stabilized the Tumour but didn’t shrink it much and nerves were damaged. Still experiencing changes as nerves settle. Made sure that lead doctor was aware of issues and had assessments done to set a baseline (physiotherapist for vestibular/balance damage, speech pathologist for swallow and speech, neuropsychologist to assess if cognitive damage from radiation), hearing assessment and hearing aids. Radiologist told me that due to Tumour type (slow growing) that recovery and any shrinkage would also be slow. Good news from latest mri is that the Tumour is stable and that there is no hypotension so hopefully the leak has healed itself. My GP thinks that I have made a remarkable recovery but strongly recommends that I remain on disability. Initially I thought that I would to would return to work the following Sept but rebuilding my strength and learning to adapt to changes took much longer. Then the csf leaked sidelined me again. I have had to learn patience and to listen to my body!

  310. My doctor kind of sat there and blinked when I told him I had more symptoms since gamma knife than I did before hand. his solution was to come back in 6 weeks. Fortunately my sumptoms seem to have gotten somewhat better lately.

    Laura – thanks for the speech therapist suggestion. I’m up to my eyeballs in medical bills so I looked online and got some excercises to do with my tongue. I now drive to work with my tongue sticking out as far as it can go and hold it for ten seconds at a time for several repititions! I’ll see if that makes any changes.

    I’ve also learned to listen to my body. I slept 10 hours Saturday night and still took a 2 hour nap on Sunday. I think my headaches stay away if I don’t push myself and get plenty of sleep. I spent the last 4 years not feeling right. The first issue was kidney stones, less than a year later was another kidney stone the size of a walnut, less than a year after that was a hysterectomy and now this year was a brain tumor. After every surgery I kept looking forward to feeling normal and not being so tired. I thought for sure the hysterectomy would have straightened things out but was totally blind sided by the tumor. I’m still waiting for normal to return but am optimistic that this time might do it.

    The important thing to remember is keep pushing until you find a doctor that will listen. No one knows our bodies better than ourselves.

  311. Well it has been 5 weeks since my surgery and i have got to say that i feel alot better than i ever dreamed i would. When you first hear that you have a tumor in your head the size of a lime and read everything about it on the internet its crazy scary. I had never had surgery before in my life and now i was gonna have 10 possibly 15 hour surgery and on top of that they might damage my nerves. I had this big idea in my head that i was gonna be laid up in the hospital for weeks and would would have unbearable pain and would be miserable. Although i still have a long road of recovery ahead the whole ordeal was alot better than i had envisioned it being. I found this blog shortly after my diagnosis and it has really helped me and scared me at times but looking back im soooo glad that i found it. I still have double vision but it seems to be slowly improving, left shoulder is still weak but slowly improving, jaw still sore but can chew alot better, still numb under my chin and everywhere inside the big C scar, got the weird metal taste on the left side of my mouth, voice still a little weak but 200% better than before surgery, and i have big patches in the back of head where i have been losing my hair (possibly a side affect from the anesthesia).I also get tired and wore out easily and I know what Robin means about sleeping for 10 hours and still taking a nap:) I love me some naps!!! Whoa it sounds pretty terrible when you write it all down but it is all managable and im just thankful to be alive.

  312. Hi Caleb,

    So nice to hear from you. You sound so positive and you have youth on your side. Take care of yourself and give yourself time to heal.

    I finally met with the skull base team in Nova Scotia yesterday. We decided on fractured radiation. I have been referred to the radiology department and waitng to hear from them for a start day. It won’t be for a month or two.

    I had an MRI 6 years ago when the doctors were looking to see if I had MS (had unexplained pain in my legs). The doctors on the skull base team reexamined that MRI and found no evidence of a tumor then. Therefore they know that my tumor is not as slow growing as some, however where it is still small we have opted for radiation to see if can stop the growth and possibly shrink it. I realize that may make it more difficult to have surgery later. Dr. Bance says that he has had more experience with surgery after radiation on acoustic neuromas but he really did not find that big a difference with or without radiation first.

    I admire all of you that have had these long surgeries but I have to admit it scares me more than the after effects of radiation. I have baby fine hair to start with maybe I should start shopping for a wig. LOL.

    I hope everyone keeps posting their experiences wether it be surgery or radiation as it helps us who are just starting our journey
    know what we can expect.

    Now I have to get ready for work! Have a great day everyone. Beautiful sunshine here this morning!

    Linda H.

  313. Good Evening,
    I saw my otolaryngologist on Friday morning and the check up went pretty well. My paralyzed cord actually looks decent. One possible treatment is to have Cymetra (collegen-like material) injected into my palate to see if this would lessen the amount of air lost through my nose when speaking. This could improve the quality of my voice. While this is temporary, if effective a palatal flap would make the result permanent. Cymetra is what was injected into my cord a while back. I can’t say I’m looking for additional treatment and surgery quite yet; however, the prospect of strengthening my voice is intriguing. It helps to hear how everyone is doing and to share a little. I too am tired. Our school year ends in about four weeks and I am so looking forward to some down time. Take care everyone.

    1. Dan
      Keep on trucking. My vocal issues are negligible. As I said to someone here before, I only have a problem if I have to raise my voice. Since I am one of the fortunate ones to be retired from teaching, I hardly ever raise my voice anymore. No one believes I could ever sing. I am so bad now. I was in a major music vocal program in high school. So, I hum. My hearing is so bad that I don’t bother myself. Do what you need to do to reach what will be the new normal for you. If this is it, then it is what it is. If you want to go for it, go.
      Claire

      1. Thanks Claire, I am still trying to figure out what that new norm will be. Thirteen months post-op I a remain hopeful that “things” will continue to improve. Time will tell.
        Take care.

  314. Linda H.
    I am interested to hear you are going with fractionated radiation, since that is what I had. I can honestly say I lost little hair…it thinned a bit behind my right ear where the tumor is, but that’s all. I wasn’t even horribly tired…I missed one day of teaching school just because I thought I deserved it, but I wasn’t so tired I couldn’t function. Then some of my treatments were over Christmas vacation when I was out anyway. I didn’t have any skin burning or anything. The most annoying thing was just having to take the time to go for the treatments. I’ll be very interested to hear how you are getting along. I’ve been noticing there are several teachers in this “exclusive club.” I find that intriguing. Good luck!

    Pat J.

  315. Linda H – I would be interested to know why you chose fractured radiation. I, too, was scared to death of the full surgery. I’m not usually afraid of surgery but I think ‘brain tumor’ was different. I am hoping for best after gamma knife but always have plan b in the back of my mind in case the tumor comes back. I find comfort in everyone’s journey just in case I have to take another route. I’m 8 weeks out now but am feeling better every day. I think the sunshine has something to do with it!

  316. Hi Pat and Robin,

    First off I am an accoutant not a teacher. But I too noticed there seems to be a lot of teachers on this blog. Probably says more about the inqusitive nature of most teachers I know. Perhaps they are more likely to seek out answers and do their own research.

    I had decided I wanted to have radiation rather surgery before my appointment. First of all because I could, my tumor is still small enough. The university hospital I went to does not offer gamma knife. I would have to travel to Toronto for that. My doctors felt more comfortable with the smaller dose of radiation of fractured radiation than a single large dose. They felt that the effects of gamma knife are unknown. I think they say that because they don’t have it. LOL. My tumor has not yet affected any of the nerves, however it is very close to the carotid artery so it is important to try to halt it’s growth now.

    I live in a province that has less than a million people. There is great quality of life here however we do not have all the medical equipment of larger centres. I will have to travel to Nova Scotia ( 5 hours driving distance) for the 4 or 5 weeks required for the treatments. Toronto is a 15 or 16 hour drive so I would be flying there. So that weighed in my decision as well.

    On another note, Dr. Bance suggested that my siblings have an MRI. He said there is a 5% chance that the tumor is caused by a familial gene. He said that more than likely it is not but just in case. The gene is passed on by males, so I could not pass it on to my son, but my father could have passed it on to me.

    I have been planning a trip to New York at the end of June, sure hope my treatments start after that.

    keep on blogging…….

    linda h (I give up my shift key only works half the time0

  317. http://brainsurgery.upmc.com/endoscopic-endonasal-approach/index.aspx

    Hi Everyone

    I finally got my appointment with Shands in Gainsville I’m seeing a neourologist called Dr Omalley on the 18 th May I am scarred and relieved to being seen so quickly all at the same time.
    My manager found the above procedure I thought it might be of interest and wondered if any of you have had this or have heard of the success rate I’m still thinking of ou all and pretending it’s all a nightmare I’m going to wake up from ; -(

    Fiona

    1. I hope everyone is doing well! The neurologist yesterday said there was just usual post-surgical changes and nothing that she could do for me in regard to the whole head ringing, spasms, and pain. She did give me nortriptyline to help with the headaches. I will now see an ear/nose/throat doctor late this month. He is the same one who found my glomus jugulare in 1987. While I am extremely relieved to know that I do not have an acoustic neuroma or regrowth of my original tumor, I am very frustrated in this deep-seeded feeling of having to live with this 4kHz ringing in my entire head for the rest of my life. I am 46 and this has gone on since January…it is driving me crazy! Take care and God bless each of you!

  318. Hi Mia,
    Sorry to hear about the ringing in your head. What your salt(sodium) in take. I have always kept mine to 1000 mg of sodium. It wl help with the amount of fluid in your head. Don’t eat processed foods.. Make sure you are drinking enough water. I hope this helps. Have a great day!
    Sue

  319. Linda H – I think you’re right – doctors recommend you to what you know. My doctors were all about gamma knife with fractured radiation as the 2nd choice because gamma knife is more accurate, plus that is the machine they have. The hospital up on the hill would have recommended fractured radiation because that is what they have. I thought I’d start with the least invasive and go from there. I had also read an article about the genetic link. My dad died at 44 so I won’t know if he carried it but luckily I’m a female and only had a daughter.

    Mia – I’m excited for you that it’s not another tumor and I hope you can find something to relive the ringing. My ringing is louder at times than others. I have figured out the weather, body temperature and blood pressure affect how loud it is. It’s really loud when I’m really tired. We have several days of sunshine ahead so I’m looking forward to soak up the sun. I seem to feel better with the sunshine.

    Robin

    1. Absolutely. My doctors recommended surgery. They gave me reasons, which made sense and I was comfortable with them so combined with the reasoning and my fears of radiation to my head, I went for the surgery.
      I still have intermittentent pulsations. Sue’s suggestion are very interesting. My doctor said I should wait until allergy season is out of the way before going for a hearing device because of swelling. I have always felt “clogged” after eating excessively salty foods. There may be come connection with the swelling of the eustacean tubes. I am pulsing today. Allergies bad AND I had lunch and dinner out so I didn’t control the salt. I’ll see what happens when I am in better control tomorrow.
      Thanks everyone! Let’s keep each other going.
      C

  320. Hi everyone,

    We have had very wet weather here the last couple of days and I have had a wicked headache. I have noticed this before. Do any of you find you have headaches related to the weather? … or is it just a coincidence on my part?

    Linda H

    1. I have been saying this for years. It did seem to improve when I stopped working, but in the past year, though my headaches have been less frequent, when there is a big weather situation, I have a wicked headache situation. I thought maybe the pressure on the tumor may have been too much too bear, but the tumor was 97% removed, and I have had headaches since the surgery. They are in the front of my head. I did have a headache in August when I got my diagnosis until after the surgery. The first thing I noticed when I stopped seeing double after the procedure, was the absence of that pain. They said that was stress. Who knows anything. Allergies, air pressure, stress, emotions. What a pain. C

  321. Hi Linda H.,
    I don’t get headaches, but have noticed a feeling of fullness in my ear seems to correspond to a low pressure….it feels like it needs to pop but can’t. It usually goes away after the pressure rises again. Strange, isn’t it?

  322. I live in the NW where weather changes on a dime. We had a bright sunny day of 80 on Monday and then lows in the 30’s with Tuesday’s high of 60. I don’t always get headaches with the weather change but I do notice a difference in my sluggishness and my right side of my head feels off. I tend to have more swallowing problems when it rains. The day of the surgery the nurse told me the barometric pressure definately affects the pressure in my head. Allergies has definately affected my head as well.

  323. Hello All

    I’ve been reading you all as you post ant thought I would update my situation.
    I’m going to see Dr O’Malley a neurologist in Shands hospital Gainsville on Friday 18th I’m quite surprised how quickly I’m being seen cand decide if that’s a good or a scary thing can’t remember if I updated you all on the CT scan showing the Glomus Vascular but the MRI not showing it ?
    Has this happened to any of you at all is it normal to start to feel headaches and aching in the right temporal area after the diagnosis on the CT but never noticed it before?
    It’s a long journey from Pensacola where I live with my 2 kids to Gainsville I’ve tried to talk myself out of going and to just carry on I don’t have all of the symptoms but I know deep down I need to find out what it is I have even if I hope it is an error on the radiologist…
    Let me know your thoughts your all in mine 😉

    Fiona T

  324. Hi everyone,

    Thanks for confirming the pressure thing for me. Pat I know what you mean by the fullness. I have that too. All of the doctors I have seen say that they can see my tumor right behind my ear drum so the popping sensation makes sense I guess.

    Hope everyone has a great Mother’s Day tomorrow and that your families cherish you.

    Linda H

    1. Fiona:
      As I said earlier, I had a headache almost simultaneously with my diagnosis and it was gone after the surgery. I had MRI/MRA and CT scans done with contrast. The pulsations you are hearing are just that. The tumor is vascular, so it is pulsing with your heartbeat. Make the committment to yourself to take care of yourself. It was explained to me that if I did not take care of the tumor, all of the problems you might have after surgery, at a time in your life you are able to deal with them, would eventually happen later at a time when you could not handle them. I know you have a long trip and children, but you can only see a doctor who knows how to handle this condition. You can’t just trust to luck and let things take care of themselves. We are all with you.

  325. Fiona – you are doing the right thing by seeing another doctor. I only had a few minor symptoms, too, but my primary care doctor scheduled me for an MRI. I did it, fully thinking it was just precautionary. I was glad after the fact that I went and they found the tumor while it was still small. I remember scheduling gamma knife surgery 3 weeks out was too long. I wanted to do something right away – but the neurosurgeon reminded me it was a slow growing tumor. It’s also a slow healing process. I’ve learned those around me don’t like to hear about it so much so it’s great being able to voice things here and get responses in return.

    Robin

    Did they do a contrasting MRI? I think these are more accurate showing the glomus tumors because they are more vascular.

    1. Hello All
      Thank you for your kind thoughts of course I will be going to the appointment in Gainsville on the 18 th I will let you all know how I get on your all such an inspiration to me.
      I hope I can be as brave as you all are if they tell me I have to have some further treatments thank you for your heart felt support I appreciate the time and trouble you all take to keep in touch 😉
      Fiona T

  326. Hi Fiona,

    I’m sure we have all had our moments of doubt but please don’t skip your appointment. I understand the travel is difficult as I have to take time off work to travel for my appointments (4.5 hrs each way). I don’t have small children, but that means you have more reasons to take good care of yourself. Just think of the unecessary worry you will have over the next few months if you don’t go and you are lucky enough that it was a radiologist error.

    Best of luck I will be thinking of you on the 18th.

    Linda H

  327. Fiona,
    Please make the travel. I too had to travel 8 hours to have my surgery for my 2nd tumor. It is hard to travel the distance but worth it to see the right doctors. Believe me not all doctors are the same. I have been very blessed in my journey to have had the best. I would not be here without that. As far as this thing being slow growing I am living proof that that does not always apply. I just think this thing is unpredictable because mine was not slow growing at all. Take care and keep us posted.

    Linda

  328. Dan,
    I too am in NC. My right vocal cord is completely paralysed. About 6 months after my 2nd tumor surgery I could barely whisper and had horrible swallowing issues. My dr who is in Winston Salem did a implant that pushes my right vocal cord over so that it touches. They do a twilight sleep so that you can talk to them to get the size of the implant correct. Think about this I can highly recommend it. My voice is not perfect but very close to normal and it helped my swallowing greatly. These are the same doctors who performed my first tumor surgery but they are also the ones who found me a wonderful dr to tackle my second one. They take care of me now monitoring my 3rd tumor. Dan, the surgery was nothing compared to everything else. Home by noon. Could not speak for a week but after that I made up for a lot of lost time. Take care and I too am tired. Sometimes I really get tired of just being tired so I fully understand. If you would like the name and number of my dr. I will be glad to share. After all I have my own wing at their offices, I tell them that I just need a name tag somewhere. Of course they think I’m a nut but they do take very good care of me with my follow ups and monitoring the size of this 3rd tumor.

    linda

  329. Tired of being tired. Linda, you said it all in that sentence. No one understands that this is not the kind of tired that a nap will fix. Hooray for us and our understanding of each other.

  330. Thanks Claire for understanding,sometimes I think we are the only ones that truly understand. You can not explain this in ways that others can understand. Because it’s so rare with not really a lot of answers other than we really don’t know others don’t get it. I am so thankful for this site. It brings together others who have been or there now that can honestly say “I know how you feel”.

    Linda

    1. I am glad to be appreciated, if only in this club. I have tremendous feelings of isolation. I am single and now living alone. I have a wonderful group of friends who got me through this. Many are cancer survivors. But they think I am just slacking now. They don’t get that my idea of a fun place is not being under this heavy wet blanket. I am wondering if the secretion component of this is part of the problem. There is such a lack of information. If I didn’t have this site I would have gone under by now. Keep it going. I almost panic when there is nothing going on. Feel good.
      C

  331. Fiona,
    Thinking about you today. Hope things went well and hope you have some answers. Sometimes I think that helps. It may not always what we want to hear but at least we know a little about what we are dealing with. I know you’re tired from the trip and everything else but please let us know how you are first of all and also what you found out. Good news I so hope.

    Linda

  332. Yes, am thinking of you Fiona. The known is easier than the unknown and you know you have all of us alive and kicking. Life goes on, just not as we knew it. If you are tired, take advantage of any help you can get. Let anyone and everyone pamper you. It will get old, but take it while you can get it! Let us know how you are doing.

  333. Hello everyone. I hope you are well. I had a rough couple weeks with the pain especially the ear pain. The pain makes it difficult to sleep at night and the pain is also unbearable during my 8 hour shift at work. My ENT also the oncall doctor for my ENT pratice says there is nothing wrong with me and asked me about my neurologist. I went to see my neurologist today and he recommended me another surgery to block the nerve. He also recommended me to a neurosurgeon for the surgery. I had a problem with this neurosurgeon before especially his office staff. Despite my insurance(he is in network) they requested me to pay up front during the time I made the call for the appointment. I asked why because I never heard of such a thing a the receptionist yelled at me and hung up the phone. I talked to some people who seen this neurosurgeon and they all told me “beware.”. One person told me to read behind the lines in his biography on his website and he shamelessly tells on himself saying more or less he is in it for the money. One patient said he, “rather be climbing mountains on yours and your insurance company’s dime than actually treating you.” All the events of the last few days just seems unreal like it is some badly produced television movie. Could this be the real world? I have been crying all day.

    1. Lilly, Where are you? I had trouble with my original ENT, before things got to ENT/Neurologist stage and I refused to be bullied by the office staff. Ask for the office manager and explain to him/her that this is unacceptable. Report all this to your insurance carrier and threaten them that you will report them to the board of ethics. The doctor may be unaware of what is going on in his front office. Might not care, but if he is in it for the $ and people stop coming he will care. You must find yourself someone at a teaching hospital with a knowledge of this condition and a cooperative staff. Maybe you should refer them to this blog so that they can see that what we are feeling is real and common to all of us, not some figment of your imagination.
      If I could hug you I would. Chin up. Perserver and find the RIGHT person to handle your case.

  334. Oh by the way, I told my neurologist that, “I will be damned if I go back into his hospital again.”This is same hospital that the nurses denied me pain medication for nearly six hours until my mother came in there screaming because my mother said I looked really bad. I don’t for a minute believe that the hospital lives up to its motto, “Good time happen here.”

  335. Lilly,
    Get away quick. find another dr. I too saw a neurologist that was the same way. I politely told my ent dr. if he sent me their again I would probably drop kick him through the wall. My precious dr told me the name of another dr and also imformed me he was glad I was so honest and he would never send another patient to him. This the kind of dr you need. Good caring drs are out there you just have to look. It’s sad that during all this you have to do this but please do. It can be a nightmare but you can do it. I also told my ent that the neurologist was a rude,pompous ass. I’m so bashful. HA HA. When you are dealing with this a caring dr is a must. I sorry for everything that is happening but be strong and find the dr that works for you. Take Care.

    Linda

  336. Thanks Claire and Linda. I live in Central New Jersey. I went to teaching hospitals in Philly, Baltimore, and NYC. The one I had my current troubles with is one of the more well known teaching hospitals in NYC. Their motto is “good things happen here.”

    1. Lilly–I used Dr. Gady Har-El (head and neck surgeon) at Lenox Hill. He was kind and caring and the office staff couldn’t have been nicer. He coordinated my team. The ENT/Neuro was Dr. Darius Kohan. He was super. He has an office on Park Avenue which is difficult to get an appt at, but once Har-El called I had an appointment immediately. I was willing to go to his Brooklyn office. I didn’t care that the office is a bit seedy there. Parking was cheaper and I saw him not the furniture and surroundings. Everyone was skilled, compassionate and got the job done with minimum damage. I hope these are not people you have already encountered, because they were special. Don’t settle. The hospital was so, so. But I was only there for the embolization on Monday, the surgery of Tuesday and went home Thursday morning. I could have gone home Wednesday night, but was woozy and live alone so I was afraid. I should have gone home. If you opt for surgery you need to get up and move around to get the anesthesia out of your system. No one in the hospital wants you moving around. Then they would have to watch you. The doctors want you to go home. Keep me posted.

      1. I hope you are all doing well. I have neck surgery scheduled for June 4th (tentatively)…fusing C6-C7. This past Monday, I woke up with my left arm numb and paralyzed, and it moved into my right arm. I am wondering if this isn’t contributing to the ringing in my entire head. I knew last summer I needed four disks fused, but have put it off. Stubborn. Monday was a wake-up call…I don’t ever want to experience losing my arms again! Take care and my thoughts are with all of you!

        1. Mia:
          Good luck with everything. C7 was the nerve compromised with my surgery, so I know what you mean about not being able to move your arm. About a year and a half ago, before I had my hip replaced, I removed a washing machine from my basement by myself. Today, I had to hire someone to help me clear out clothes and such from my late mom’s closet. Hopefully we will be strong again. I don’t plan on moving washers anymore though. Luck and love to you,

  337. Good Evening,
    I saw a neurologist yesterday, actually a PA. My headaches are pretty regular now with an occasional migraine mixed in. We talked about rebound headaches caused by eating too many acetaminophen too often. I believe it to be so. We went a different direction to address the pain. We’ll see how it works. Isn’t it wild to be in a place where they no longer talk about what causes the pain only about managing it.

    1. Hi Dan,

      I have had rebound headaches before so I know what you are talking about. I try to only take something when my headaches are really bad, for instance for me when when it rains. If I get into taking ibuprophen everyday, which I have done in the past, then I get a headache every day. I once had a headache that lasted for months until I read about rebound headaches and cut the over the counter meds out totally. Your doctor is so right. I would be interested in hearing what he recommended instead.
      .
      Linda H

  338. Hi Dan and all. I totally agree with your statement, “Isn’t it wild to be in a place where they no longer talk about what causes the pain only about managing it.” I have gone to doctor after doctor prescribing different medications from Topamax to Neurontin but not really figuring out what is causing the pain. I don’t want to take medication for an extended period of time because of the other health problems it causes from rebound headaches as mentioned by Linda to kidney and/or liver problems. What is the root cause of my pain, I guess I will never know based on our less than adequate health care in the United States where some doctors shouldn’t be in the medical field because of their own personal gain and health insurance companies who main motive is greed. One doctor was like he was going to open me up to see what the problem was and I responded, “The hell you won’t.. You aren’t digging for gold, this is my head here.” Right now I frustrated because I know my body and I know that this pain isn’t right–something is wrong but have yet to have a thorough CT scans or MRI.

  339. Lilly,
    Just face it we all have the plague. HAHA. It’s sad to say but sometimes that’s how I feel. I believe most doctors say something instead of just saying I really don’t know. It gets so frustrating but hang in there we will get through this together if only my screaming through words written here. I do not want to take meds every day but with this 3rd one I am to the point with the headaches I tell my dr bring it on. I am on topamax and this has been the only thing that has helped. I am at the end of the med list. It does not take away the headaches but I am able to function without thinking about banging my head on the wall to see which feels worse. I am not making light of our “situations” but sometimes I have to joke about it to keep from screaming out loud for you to hear all the way from NC. Take care

    Linda

  340. I’m wondering if headaches are caused by exposing nerves during surgery. My neurosurgeon explained that just opening my skull could damage nerves and could possibly be permanent. That was the biggest reason why I chose gamma knife. I’m ten weeks out now and still dealing with swallowing issues. I don’t really get headaches but more of an imbalance of pressure in my head. I noticed when it’s bad and I bend over I can almost feel the pressure shift. I also have a channel that burns from my ear down through my neck and into my shoulder. I’m sure it’s nerves that affects those muscles.

    I had my semi-annual teeth cleaning the other day. They said they wanted to take X-rays and I said NO WAY! Unfortunately my normal hygientist was out but I asked the one there if they check for mouth issues because my tongue had atrophied before my last visit but no one said anything. That was 4 months before I was diagnosed so I feel dental professionals could be a great front line to notice beginning symptoms. The hygientist said they do check for oral cancer. The good news is I put a face to recognizing small issues that could be the beginning of bigger issues. They were very open to hear my story and I left feeling they would be more sensitive to looking for issues in the future.

    I’m looking forward to a 4-day weekend with semi-nice weather!

    Robin

  341. So Linda that’s the screaming I heard while passing through Durham last weekend. LOL. I am with you Robin that opening the skull plus have you head in one fixed position for hours(8-24 hours) can cause nerve damage. Having my skull opened a total six times was probably no help with my issues. I didn’t choose the radiation because of the time involved that the doctors had chosen for me(they suggested 5 sessions per week for 6 weeks plus the hospital was 2 hours away) and this was the second mass I had in and around my middle ear pushing against my skull.

  342. I thought I had addressed Dan’s issue of treatment of symptoms but I cannot find it here. I think that it’s another way of just shrugging shoulders at us. What about cause and effect? I understand the need to alleviate pain. Pain is wicked and it must be dealt with, but to just dismiss that it might be caused by some “unknown” is just too easy. I think in this department some of the better alternative doctors have some good ideas. Maybe food allergies? I know I suffered headaches for an entire summer one year. When the heat went away, so did the headaches AND the diet soda. Tried my theory, had a couple of cans in one day, headache came back. It can’t hurt to try elimination diet. Not saying I never had another headache, just not like those. I know, I am rambling. But headaches do seem common to all of us, and to have them less severe and less frequently, I will try anything over drugs.

    1. I am with you on trying to eliminate foods from our diets and I have done so. If it is not made by nature, then I don’t eat it. I have also eliminated headache triggering foods such as cheese(miss cheese) and chocalate(never really cared for it). I have also eliminated personal products like shampoos, body washes, and lotions that contain questionable ingredients like sodium laurel sulfate, silicone , and parabens. I mainly use Castile soaps for body washing and hair washing and organic lotions. I told my doctors this and they laughed at me. As far as the pain, the doctors just swept me under the rug. I don’t even mentioned I am in pain when I go to my ENT because I know I will be either yelled at or he will roll his eyes when I mention it.

  343. Thank God I don’t have any doctors who yell. But I don’t know why they don’t want to try to understand the pain and fatigue more. Only my dermatologist gets it. If they could all be like him, none of us would have any complaints. But, he only treats skin. But tho the ENT poo, poo’s the scar tissue business, the derm injected the scar behind my ear and released all the discomfort that went with it. All he ever says is, “stay away from doctors”. He’s funny. I am just glad I found all of you.
    Where is Fiona? We worry.

  344. Calire, Why do have a feeling that your dermatologist’s joke has some elements of truth? Well it is getting more and more surreal for me today. So bizzare that Dali would be confused. I woke up with a bad headache this morning, tried to sleep it off until every afternoon, and went to the pharmacy for my refill. By the time I got to the pharmacy it felt like I was hit on the back of my head with a baseball bag. Oops, to my delight(insert sarcasm here) my prescription had bottles of meds that I don’t use like Topamax and one I don’t know where the hell it came from. I am blaming the pharmacy on that because they have screwed up my meds before. Then call my neurologist’s answering service and ask the doctor to call me back. He calls me but asks, “Are you a patient of mine? Who are you because I see so many patients? After telling him that I saw him a week ago he said “oh yes I know who you are” but I know he really didn’t know who I was. I guess I am nothing but a number to these doctors. I got a sickening feeling in my stomach when the doctor asked me to call back on Tuesday. I