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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Hello to everyone,
Glad to see so many posts. Must be a talkative day for all of us. This site helps so much with knowledge,comparisons and experiences. I have been through everything but the Gamma Knife. Traditional radiation did not stop this thing from growing,my Dr. said it only made the surgery more difficult due to the scar tissue that forms.Concerning the voice I have an implant that pushes my right vocal chord over towards my left and my voice is not perfect but way above a whisper. Can’t sing but never could. Can I yell oh yeah. My voice is just a little sexier than before that’s what I tell myself anyway. I might be the only one who thinks so but I like my opinion. Keep being strong our “normal” together is going to get us through. I am so thankful for each of you sharing everything. I think this helps us all. Bless all of you and pray for those that join us.
Linda
Amen to all the prayers and for us to keep together through this “new normal” I applaud Mandy for being so heroic and showing hers scars and lettiing me know not to be afraid. I did buy a hair etension which I didn’t need and can’t even play around with because I can’t raise my arm up to put it in. I’ll just scare people with it. I applaud each of us for getting through, helping each other and bonding together. Keep it going. I need all of you. C
Laura b
Amazing how similar some of your experiences are to my situation. Dr’s would not operate nor do gamma due to size and location of the tumour (similar to yours in size). I too teach but had to leave work as Dr’s did a biopsy to confirm the type of tumour and to relieve pressure on cranial nerves – was experiencing significant facial palsy – prior to radiation. I was on steroids to control swelling pre and during radiation which added to the recovery time. Be prepared for some side effects from radiation and for tumour to possibly swell before it stops growing or hopefully, shrink. Ended up taking a year off work. Challenges post radiation included some slight issues with my swallow, continued deviation of my tongue and some slight difficulty with speech, balance issues and complete hearing loss in the right ear. Was in the process of gradually returning to work last Sept when I experienced complications of a csf leak believed to be caused by the tumour shrinking and pulling on the dura – headaches were extreme and lost a lot of weight due to vomiting and not eating/drinking. Drs can’t find the leak so can’t patch it so I’m in wait and watch mode. Things are improving but I am still off work. Take time to make sure that your body has healed before returning to work. My gp and radiologist indicated it could be anywhere from a year to 18 months for things to settle, my ENT said it could take up to 5 years for nerves to settle from all the trauma. Wasn’t expecting recovery to take this long – so out of character for me to do things slowly and rarely took sick days before this. I have learned patience!
Re tumour type – is not a brain Tumour as it is not growing on the brain. But symptoms can be similar as it puts pressure on the brain / brain stem. So I go to a monthly meeting of our local brain Tumour support group – it is an opportunity to ask questions and talk so that I don’t burden family /friends and they ‘get it’. Many of the Drs, treatments and experiences are similar.
All the best on your individual journeys!
Hello,
Thanks for all the prayers everyone!
Robin: I had Stereotactic Radiosurgery using the Cyberknife done.
Laura: Happy Birthday! Hope you enjoy you day!
Lilly: I live in NJ.
Will go for my 3rd treatment today. No side effects yet. Has anyone else here had the Cyberknife Stereotactic Surgery?
Lori, I am from Central New Jersey near Princeton. I hope everything goes well for you. Be the blessing.
its coming up to a year since my operation at addenbrookscambridge. i go for a check up end of this month.i have finished my 6 weeks radio therahpy now.im waiting to go and have a mri scan in october sometime to see how the treatment has worked.im feeling ok i still have numbness in side of haed near ear and my ear is still numb and sore.my taste buds are not back yet to normal and after i had operation the noise in my left ear had 70 per cent gone..but since i finished my radio theraphy the noise is come back again to how it was before operation,has anyone else had this,,,,,
Tina –
It could be your tumor has swelled from radiation before it will start shrinking. That could cause the nosie to come back.
I had gamma knife 7 weeks ago and it seems like the noise is getting somewhat quieter but I think weather affects it. The nurse told me that weather affects it because it changes the pressure, just as blood pressure and body temp affects it as well.
My problem the last few days has been swallowing food. I think I’m going to have to become a vegetarian because meat tends to get stuck. I think my tongue is not strong enough to move it down. My neighbor suggested I see an ear, nose, throat doctor but not sure what they would do. I think I’ll wait until my next check-up to see if things improve.
It’s funny how we all have the same tumor but there seems to be so many different symptoms and so many different ways to treat them.
Robin
hi mandy jones im just wondering how u r now since your operation just over 3 years ago now..has all the numbness gone yet and are your taste buds back 2 normal..
Good Morning. Thanks for the birthday wishes. Happy Cinco de Mayo and it’s also Derby Day.
Liz, thank you for your information. That csf leak sounds ugly. Glad you are on the mend. I figure if I do the radiation late may/early june, I can rest all summer and hopefully will be able to return to work in September for real. I’ve been reading up on the side effects – did you have sore throat, mouth sores, skin problems at the site, changes in your taste sensation? Was your swallowing worse than what it was pre-treatment?
Robin, I’ve been doing some reading and it seems that meat is the hardest to get down. Are you eating meat with gravy? That might help it go down easier. If not meat, make sure you are getting enough protein in an easier to swallow form – smoothies with milk, soy milk or and/yogurt, almond milk, peanut butter, buttermilk. Tofu (you can make an easy chocolate mousse out of silken tofu and melted chocolate), cottage cheese, any cheese, there’s that south beach diet recipe for a mocha dessert made with ricotta cheese. Maybe some beef or chicken broth. Scrambled eggs. Milk shakes. I think I got that information on a couple of cancer websites – since they have a whole lotta info on radiation.
Get some rest and try to eat well. Good advice for all of us.
Robin, I also wanted to tell you that you might want to see a speech therapist to help you with the swallowing issues. From what I have been reading, they can give you exercises or strategies to help you. You can also eat fish or beans – good protein and softer.
Top of the Day to you all. Mia I hope all is well for you as well as everyone else. Well in efforts to try to get some help with my issues, I am planning to go viral. There has to be a doctor out there who not only can give me a correct diagnosis for my pain, headaches, ear drainage, head spasms(after first surgery), tinnutus(both ringing and pulsatile tinnitus) and severe ear aches but also will listen to me. Doctors have called me everything from lazy to crazy(before and after having the tumor removed) and the only thing that is making me crazy is some of the doctors I have encountered cavalier attitudes. I still can’t believe one doctor prescribed powerful meds and told me to see him in six months!!
Lilly-
I am so sorry you have encountered such awful people. My docs were good and had good bedside manners as well. I don’t have any major issues–some pulsatile tinnitis, arm, etc. but my biggest complaint is that I can’t get back to being me. I am so tired. I just get a shoulder shrug for that. It’s real, I know exactly what you are saying. I am not lazy, I just can’t move. I had my baseline CT scan with contrast today and now am completely zombied out. To wait for a year to see changes will be a challenge.
Mia–Hope you have some resolution. I saw something on TV the other day about injections into back for disc problems. Do research before you have fusion. Dont be offended, too much Facebook for me to handle.
Feel Good All.
C
One of the main reasons my back is so bad is because of those injections. Back in 1993 I was in a rear-end car accident. I went to a pain clinic and the anesthesiologist gave me over 400 trigger point injections of betamethasone mixed with an anesthetic. These were placed throughout my back, neck, head, and shoulders. Corticosteroids are not good for you…at least not with that many.
As for my head situation, I am so extremely frustrated that the doctors got my MRI results last week and won’t tell me till Wednesday. I doubt that they show anything except scar tissue. I am losing all faith in the medical profession in this region. There is something seriously wrong. I am getting worse. Now there is pressure in my eyes, and the right side of my throat has a lot of pressure. It seriously feels like maybe something to do with the carotid artery. I was in the ER two months ago and no one is taking this whole head ringing, dizziness, pain, change in my personality (I used to have all the patience in the world but it has significantly changed…maybe due to pain and ringing), etc. I am getting worse by the week. I saw doctors for two years before they found a lemon-sized brain tumor that was in there for 10 years. UGH.
Just not a happy camper.
I get you on that Mia and that is why I am going viral with this. I know about losing my patience. The doctor clicker is ticking and it is now up to 22. I wish you the best as well as everyone else. And I know about not be your old self again. My mother commented after my botched surgery that I went in the hospital as one person and came out a different person. I wish I was blessed with the right doctors with beside manner like you Claire. Good thing I am here. I pray every night that this will not happen to anyone else like the experiences I have gone through.
Laura B
The radiation was relatively painless at the time but there were some issues after the fact. It caused the tumour to swell – so experienced sore mouth (used meds to prevent thrush + kept in touch with my dentist), swallow issues (liquid and soft diet for a bit and still deal with this a bit today), permanent change in taste, tenderness of skin at site, and hair thinning and loss behind the ear (had radiation in March, was still losing hair in october). Also experienced double vision (stopped driving for a few months) and balance issues that resolved after several weeks. Was also on decadron so experienced side effects of it. Nausea was an issue for a bit. It took me longer to recover than I expected. Thing is that radiation stabilized the Tumour but didn’t shrink it much and nerves were damaged. Still experiencing changes as nerves settle. Made sure that lead doctor was aware of issues and had assessments done to set a baseline (physiotherapist for vestibular/balance damage, speech pathologist for swallow and speech, neuropsychologist to assess if cognitive damage from radiation), hearing assessment and hearing aids. Radiologist told me that due to Tumour type (slow growing) that recovery and any shrinkage would also be slow. Good news from latest mri is that the Tumour is stable and that there is no hypotension so hopefully the leak has healed itself. My GP thinks that I have made a remarkable recovery but strongly recommends that I remain on disability. Initially I thought that I would to would return to work the following Sept but rebuilding my strength and learning to adapt to changes took much longer. Then the csf leaked sidelined me again. I have had to learn patience and to listen to my body!
My doctor kind of sat there and blinked when I told him I had more symptoms since gamma knife than I did before hand. his solution was to come back in 6 weeks. Fortunately my sumptoms seem to have gotten somewhat better lately.
Laura – thanks for the speech therapist suggestion. I’m up to my eyeballs in medical bills so I looked online and got some excercises to do with my tongue. I now drive to work with my tongue sticking out as far as it can go and hold it for ten seconds at a time for several repititions! I’ll see if that makes any changes.
I’ve also learned to listen to my body. I slept 10 hours Saturday night and still took a 2 hour nap on Sunday. I think my headaches stay away if I don’t push myself and get plenty of sleep. I spent the last 4 years not feeling right. The first issue was kidney stones, less than a year later was another kidney stone the size of a walnut, less than a year after that was a hysterectomy and now this year was a brain tumor. After every surgery I kept looking forward to feeling normal and not being so tired. I thought for sure the hysterectomy would have straightened things out but was totally blind sided by the tumor. I’m still waiting for normal to return but am optimistic that this time might do it.
The important thing to remember is keep pushing until you find a doctor that will listen. No one knows our bodies better than ourselves.
Well it has been 5 weeks since my surgery and i have got to say that i feel alot better than i ever dreamed i would. When you first hear that you have a tumor in your head the size of a lime and read everything about it on the internet its crazy scary. I had never had surgery before in my life and now i was gonna have 10 possibly 15 hour surgery and on top of that they might damage my nerves. I had this big idea in my head that i was gonna be laid up in the hospital for weeks and would would have unbearable pain and would be miserable. Although i still have a long road of recovery ahead the whole ordeal was alot better than i had envisioned it being. I found this blog shortly after my diagnosis and it has really helped me and scared me at times but looking back im soooo glad that i found it. I still have double vision but it seems to be slowly improving, left shoulder is still weak but slowly improving, jaw still sore but can chew alot better, still numb under my chin and everywhere inside the big C scar, got the weird metal taste on the left side of my mouth, voice still a little weak but 200% better than before surgery, and i have big patches in the back of head where i have been losing my hair (possibly a side affect from the anesthesia).I also get tired and wore out easily and I know what Robin means about sleeping for 10 hours and still taking a nap:) I love me some naps!!! Whoa it sounds pretty terrible when you write it all down but it is all managable and im just thankful to be alive.
Hi Caleb,
So nice to hear from you. You sound so positive and you have youth on your side. Take care of yourself and give yourself time to heal.
I finally met with the skull base team in Nova Scotia yesterday. We decided on fractured radiation. I have been referred to the radiology department and waitng to hear from them for a start day. It won’t be for a month or two.
I had an MRI 6 years ago when the doctors were looking to see if I had MS (had unexplained pain in my legs). The doctors on the skull base team reexamined that MRI and found no evidence of a tumor then. Therefore they know that my tumor is not as slow growing as some, however where it is still small we have opted for radiation to see if can stop the growth and possibly shrink it. I realize that may make it more difficult to have surgery later. Dr. Bance says that he has had more experience with surgery after radiation on acoustic neuromas but he really did not find that big a difference with or without radiation first.
I admire all of you that have had these long surgeries but I have to admit it scares me more than the after effects of radiation. I have baby fine hair to start with maybe I should start shopping for a wig. LOL.
I hope everyone keeps posting their experiences wether it be surgery or radiation as it helps us who are just starting our journey
know what we can expect.
Now I have to get ready for work! Have a great day everyone. Beautiful sunshine here this morning!
Linda H.
Mia–Have some faith. You have your beautiful daughter, friends and all of us here rooting for you. I went to a dermatologist today who was kind and caring and injected the scar tissue behind my ear and that made a big difference. I have bonging and pressure, but don’t feel like I am wearing a hundred pound earring.
The piece I saw on our local news (NYC) was either CBS, NBC or ABC. It was not about the corticosteriod injections of the past, but some new technique–not quite approved yet, but soon–which has shown to be quite effective in restoring damaged discs, especially AFTER people have not had success with fusion. The procedure is an injection of a gel which restored the disc in its natural position. No one I know who has had fusion has had lasting relief.
Good luck with your results tomorrow.
Smile. The personality is still in there. We just have the cranks right now.
C
Good Evening,
I saw my otolaryngologist on Friday morning and the check up went pretty well. My paralyzed cord actually looks decent. One possible treatment is to have Cymetra (collegen-like material) injected into my palate to see if this would lessen the amount of air lost through my nose when speaking. This could improve the quality of my voice. While this is temporary, if effective a palatal flap would make the result permanent. Cymetra is what was injected into my cord a while back. I can’t say I’m looking for additional treatment and surgery quite yet; however, the prospect of strengthening my voice is intriguing. It helps to hear how everyone is doing and to share a little. I too am tired. Our school year ends in about four weeks and I am so looking forward to some down time. Take care everyone.
Dan
Keep on trucking. My vocal issues are negligible. As I said to someone here before, I only have a problem if I have to raise my voice. Since I am one of the fortunate ones to be retired from teaching, I hardly ever raise my voice anymore. No one believes I could ever sing. I am so bad now. I was in a major music vocal program in high school. So, I hum. My hearing is so bad that I don’t bother myself. Do what you need to do to reach what will be the new normal for you. If this is it, then it is what it is. If you want to go for it, go.
Claire
Thanks Claire, I am still trying to figure out what that new norm will be. Thirteen months post-op I a remain hopeful that “things” will continue to improve. Time will tell.
Take care.
Linda H.
I am interested to hear you are going with fractionated radiation, since that is what I had. I can honestly say I lost little hair…it thinned a bit behind my right ear where the tumor is, but that’s all. I wasn’t even horribly tired…I missed one day of teaching school just because I thought I deserved it, but I wasn’t so tired I couldn’t function. Then some of my treatments were over Christmas vacation when I was out anyway. I didn’t have any skin burning or anything. The most annoying thing was just having to take the time to go for the treatments. I’ll be very interested to hear how you are getting along. I’ve been noticing there are several teachers in this “exclusive club.” I find that intriguing. Good luck!
Pat J.
Linda H – I would be interested to know why you chose fractured radiation. I, too, was scared to death of the full surgery. I’m not usually afraid of surgery but I think ‘brain tumor’ was different. I am hoping for best after gamma knife but always have plan b in the back of my mind in case the tumor comes back. I find comfort in everyone’s journey just in case I have to take another route. I’m 8 weeks out now but am feeling better every day. I think the sunshine has something to do with it!
Hi Pat and Robin,
First off I am an accoutant not a teacher. But I too noticed there seems to be a lot of teachers on this blog. Probably says more about the inqusitive nature of most teachers I know. Perhaps they are more likely to seek out answers and do their own research.
I had decided I wanted to have radiation rather surgery before my appointment. First of all because I could, my tumor is still small enough. The university hospital I went to does not offer gamma knife. I would have to travel to Toronto for that. My doctors felt more comfortable with the smaller dose of radiation of fractured radiation than a single large dose. They felt that the effects of gamma knife are unknown. I think they say that because they don’t have it. LOL. My tumor has not yet affected any of the nerves, however it is very close to the carotid artery so it is important to try to halt it’s growth now.
I live in a province that has less than a million people. There is great quality of life here however we do not have all the medical equipment of larger centres. I will have to travel to Nova Scotia ( 5 hours driving distance) for the 4 or 5 weeks required for the treatments. Toronto is a 15 or 16 hour drive so I would be flying there. So that weighed in my decision as well.
On another note, Dr. Bance suggested that my siblings have an MRI. He said there is a 5% chance that the tumor is caused by a familial gene. He said that more than likely it is not but just in case. The gene is passed on by males, so I could not pass it on to my son, but my father could have passed it on to me.
I have been planning a trip to New York at the end of June, sure hope my treatments start after that.
keep on blogging…….
linda h (I give up my shift key only works half the time0
http://brainsurgery.upmc.com/endoscopic-endonasal-approach/index.aspx
Hi Everyone
I finally got my appointment with Shands in Gainsville I’m seeing a neourologist called Dr Omalley on the 18 th May I am scarred and relieved to being seen so quickly all at the same time.
My manager found the above procedure I thought it might be of interest and wondered if any of you have had this or have heard of the success rate I’m still thinking of ou all and pretending it’s all a nightmare I’m going to wake up from ; -(
Fiona
I hope everyone is doing well! The neurologist yesterday said there was just usual post-surgical changes and nothing that she could do for me in regard to the whole head ringing, spasms, and pain. She did give me nortriptyline to help with the headaches. I will now see an ear/nose/throat doctor late this month. He is the same one who found my glomus jugulare in 1987. While I am extremely relieved to know that I do not have an acoustic neuroma or regrowth of my original tumor, I am very frustrated in this deep-seeded feeling of having to live with this 4kHz ringing in my entire head for the rest of my life. I am 46 and this has gone on since January…it is driving me crazy! Take care and God bless each of you!
Hi Mia,
Sorry to hear about the ringing in your head. What your salt(sodium) in take. I have always kept mine to 1000 mg of sodium. It wl help with the amount of fluid in your head. Don’t eat processed foods.. Make sure you are drinking enough water. I hope this helps. Have a great day!
Sue
Linda H – I think you’re right – doctors recommend you to what you know. My doctors were all about gamma knife with fractured radiation as the 2nd choice because gamma knife is more accurate, plus that is the machine they have. The hospital up on the hill would have recommended fractured radiation because that is what they have. I thought I’d start with the least invasive and go from there. I had also read an article about the genetic link. My dad died at 44 so I won’t know if he carried it but luckily I’m a female and only had a daughter.
Mia – I’m excited for you that it’s not another tumor and I hope you can find something to relive the ringing. My ringing is louder at times than others. I have figured out the weather, body temperature and blood pressure affect how loud it is. It’s really loud when I’m really tired. We have several days of sunshine ahead so I’m looking forward to soak up the sun. I seem to feel better with the sunshine.
Robin
Absolutely. My doctors recommended surgery. They gave me reasons, which made sense and I was comfortable with them so combined with the reasoning and my fears of radiation to my head, I went for the surgery.
I still have intermittentent pulsations. Sue’s suggestion are very interesting. My doctor said I should wait until allergy season is out of the way before going for a hearing device because of swelling. I have always felt “clogged” after eating excessively salty foods. There may be come connection with the swelling of the eustacean tubes. I am pulsing today. Allergies bad AND I had lunch and dinner out so I didn’t control the salt. I’ll see what happens when I am in better control tomorrow.
Thanks everyone! Let’s keep each other going.
C
Hi everyone,
We have had very wet weather here the last couple of days and I have had a wicked headache. I have noticed this before. Do any of you find you have headaches related to the weather? … or is it just a coincidence on my part?
Linda H
Hi Linda H.,
I don’t get headaches, but have noticed a feeling of fullness in my ear seems to correspond to a low pressure….it feels like it needs to pop but can’t. It usually goes away after the pressure rises again. Strange, isn’t it?
I have been saying this for years. It did seem to improve when I stopped working, but in the past year, though my headaches have been less frequent, when there is a big weather situation, I have a wicked headache situation. I thought maybe the pressure on the tumor may have been too much too bear, but the tumor was 97% removed, and I have had headaches since the surgery. They are in the front of my head. I did have a headache in August when I got my diagnosis until after the surgery. The first thing I noticed when I stopped seeing double after the procedure, was the absence of that pain. They said that was stress. Who knows anything. Allergies, air pressure, stress, emotions. What a pain. C
I live in the NW where weather changes on a dime. We had a bright sunny day of 80 on Monday and then lows in the 30′s with Tuesday’s high of 60. I don’t always get headaches with the weather change but I do notice a difference in my sluggishness and my right side of my head feels off. I tend to have more swallowing problems when it rains. The day of the surgery the nurse told me the barometric pressure definately affects the pressure in my head. Allergies has definately affected my head as well.
Hello All
I’ve been reading you all as you post ant thought I would update my situation.
I’m going to see Dr O’Malley a neurologist in Shands hospital Gainsville on Friday 18th I’m quite surprised how quickly I’m being seen cand decide if that’s a good or a scary thing can’t remember if I updated you all on the CT scan showing the Glomus Vascular but the MRI not showing it ?
Has this happened to any of you at all is it normal to start to feel headaches and aching in the right temporal area after the diagnosis on the CT but never noticed it before?
It’s a long journey from Pensacola where I live with my 2 kids to Gainsville I’ve tried to talk myself out of going and to just carry on I don’t have all of the symptoms but I know deep down I need to find out what it is I have even if I hope it is an error on the radiologist…
Let me know your thoughts your all in mine
Fiona T
Hi everyone,
Thanks for confirming the pressure thing for me. Pat I know what you mean by the fullness. I have that too. All of the doctors I have seen say that they can see my tumor right behind my ear drum so the popping sensation makes sense I guess.
Hope everyone has a great Mother’s Day tomorrow and that your families cherish you.
Linda H
Fiona – you are doing the right thing by seeing another doctor. I only had a few minor symptoms, too, but my primary care doctor scheduled me for an MRI. I did it, fully thinking it was just precautionary. I was glad after the fact that I went and they found the tumor while it was still small. I remember scheduling gamma knife surgery 3 weeks out was too long. I wanted to do something right away – but the neurosurgeon reminded me it was a slow growing tumor. It’s also a slow healing process. I’ve learned those around me don’t like to hear about it so much so it’s great being able to voice things here and get responses in return.
Robin
Did they do a contrasting MRI? I think these are more accurate showing the glomus tumors because they are more vascular.
Fiona:
As I said earlier, I had a headache almost simultaneously with my diagnosis and it was gone after the surgery. I had MRI/MRA and CT scans done with contrast. The pulsations you are hearing are just that. The tumor is vascular, so it is pulsing with your heartbeat. Make the committment to yourself to take care of yourself. It was explained to me that if I did not take care of the tumor, all of the problems you might have after surgery, at a time in your life you are able to deal with them, would eventually happen later at a time when you could not handle them. I know you have a long trip and children, but you can only see a doctor who knows how to handle this condition. You can’t just trust to luck and let things take care of themselves. We are all with you.
Hi Fiona,
I’m sure we have all had our moments of doubt but please don’t skip your appointment. I understand the travel is difficult as I have to take time off work to travel for my appointments (4.5 hrs each way). I don’t have small children, but that means you have more reasons to take good care of yourself. Just think of the unecessary worry you will have over the next few months if you don’t go and you are lucky enough that it was a radiologist error.
Best of luck I will be thinking of you on the 18th.
Linda H
Hello All
Thank you for your kind thoughts of course I will be going to the appointment in Gainsville on the 18 th I will let you all know how I get on your all such an inspiration to me.
I hope I can be as brave as you all are if they tell me I have to have some further treatments thank you for your heart felt support I appreciate the time and trouble you all take to keep in touch
Fiona T
Fiona,
Please make the travel. I too had to travel 8 hours to have my surgery for my 2nd tumor. It is hard to travel the distance but worth it to see the right doctors. Believe me not all doctors are the same. I have been very blessed in my journey to have had the best. I would not be here without that. As far as this thing being slow growing I am living proof that that does not always apply. I just think this thing is unpredictable because mine was not slow growing at all. Take care and keep us posted.
Linda
Dan,
I too am in NC. My right vocal cord is completely paralysed. About 6 months after my 2nd tumor surgery I could barely whisper and had horrible swallowing issues. My dr who is in Winston Salem did a implant that pushes my right vocal cord over so that it touches. They do a twilight sleep so that you can talk to them to get the size of the implant correct. Think about this I can highly recommend it. My voice is not perfect but very close to normal and it helped my swallowing greatly. These are the same doctors who performed my first tumor surgery but they are also the ones who found me a wonderful dr to tackle my second one. They take care of me now monitoring my 3rd tumor. Dan, the surgery was nothing compared to everything else. Home by noon. Could not speak for a week but after that I made up for a lot of lost time. Take care and I too am tired. Sometimes I really get tired of just being tired so I fully understand. If you would like the name and number of my dr. I will be glad to share. After all I have my own wing at their offices, I tell them that I just need a name tag somewhere. Of course they think I’m a nut but they do take very good care of me with my follow ups and monitoring the size of this 3rd tumor.
linda
Tired of being tired. Linda, you said it all in that sentence. No one understands that this is not the kind of tired that a nap will fix. Hooray for us and our understanding of each other.
Thanks Claire for understanding,sometimes I think we are the only ones that truly understand. You can not explain this in ways that others can understand. Because it’s so rare with not really a lot of answers other than we really don’t know others don’t get it. I am so thankful for this site. It brings together others who have been or there now that can honestly say “I know how you feel”.
Linda
I am glad to be appreciated, if only in this club. I have tremendous feelings of isolation. I am single and now living alone. I have a wonderful group of friends who got me through this. Many are cancer survivors. But they think I am just slacking now. They don’t get that my idea of a fun place is not being under this heavy wet blanket. I am wondering if the secretion component of this is part of the problem. There is such a lack of information. If I didn’t have this site I would have gone under by now. Keep it going. I almost panic when there is nothing going on. Feel good.
C
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