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. 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
I’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.
Top 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.
I 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
Hi, my name is Mandy, and I created the Photographer blog to help DSLR beginners get more out of their cameras and their photography.
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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?
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…
thats good to hear. i wish you luck and fast recovery
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.
Yes no problem it would be great to help someone else in any way, I’ll email you…
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
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
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!!
I just got my diagnosis tonight. I’m very very nervous. Any advice?
@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?
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.
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.
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.
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
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!
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 ,
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.
WOW very impressive…. that is quite a photo project.. im going to pass on that assignment
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
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!
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.
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.
@ 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!
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.
Thanks so much for your website is nice to hear other people’s stories with these kinds of tumours.
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.
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.
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
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.
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
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
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
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!
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.
*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.
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.
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..
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.
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.
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.
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
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 ..
is it possible to talk to Mandy. Does she have any email.
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!
To Jennifer
I would be more than happy to get in touch … Are you on face book?
Anyway contact me on macy.campbell@btinternet.com
Be really good to hear from you
Alison
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.
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
@ 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
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
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.
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