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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http://www.facebook.com/aaron.delatorre
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!
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!
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!
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.
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
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!
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!!
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:)
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.
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
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!
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.
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
)))
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/
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…..
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.
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.
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.
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
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.
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
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
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