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 Jones and I created the Photographer blog to help DSLR Beginners improve their photography, and get to know their camera better.
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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…..
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.
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 .
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!!
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.
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.
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
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.
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?
@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.
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.
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.
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.
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
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 .
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
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
Peggy my prayers are with you.
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???
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.
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
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.
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.
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.
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
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.
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
Dona,
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.
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.
@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.
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
@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.
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.
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
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.!!!
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.
Hello Donna
Paul Fagan removed a glomus jugulare tumour (right side) in March 1994. He’s one of the best in the world.
I have been unable to post. If this goes through I’ll share my status with the infamous tumor.
z
@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.
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.
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
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.
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, ………….
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
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
@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.
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.
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.
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.
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