After My Acoustic Neuroma Removal - Part 1

[soho2014]

hope you feel better now.

[chiripitio]

My respect Man !!! You are a winner and you valor Is so much !!! I was the same tumor and my face dont be the same.....I kwon the hard way .We are a survivor .My best wishes .Thanks for your video

[MrNeotheist]

Ive had an acoustin neuroma for 4 years now. My neurologist at Dartmouth med sees me every 6months, it has grown or moved. God bless you!

[myladyintricate]

Thank you so much for making this. I hope you keep improving. I am currently in hospital right now having an AN taken out on Wednesday and this video really inspired me and gave me hope. Since they seem kind of rare (or at least not very prevalent) there isn't really as much information out there as there would be for more common diseases so this information is really valuable.

[ThePianopaws5]

dear OP, thank you so much for this. Im studying to be a physical therapist and finding stories like yours helps me understand what kind of social support people need. Our case (a practice one) right now says that the "patient" is worried that he looks drunk and it will affect his job. i will keep digging to find what might help. careful training in gait might help. thanks again :)

[TheRedtaz]

i had an acoustic neuroma 11 years ago, 4 centemeters, 13 hours of surgery, and the tinnitus is still loud, it's a nightmare.

[video4yourtube]

same disease than neurofibromatosis type 2?

[nick0103]

can u tell me wat ur symptons were before the surgury

[MsSimsAddict]

this looks truly debilitating.

[lmoc718]

I had the same surgery you did about 7 years ago & have never discussed it w/ anyone. It is so remarkable to me that you chose to share so much. If you would care to share how you feel know via email i would really like to see if we're experiencing any of the same symptoms. I don't really know what normal is except what I have experienced myself. I hope this finds you well. This was incredibly courageous.

[dxhumph]

How big was your tumour?

I had some sudden tinnitus in one ear (already suffering bilateral tinnitus to a lesser extent) but this was very specific, loud and disturbing - lasting for a week or so then subsiding.

An MRI came back and showed that I have an Acoustic Neuroma - currently at about 4mm. I know these things can grow out of control, and im yet to see the specialist so the advice on my specific situation is scarce at the moment.

Hopefully I can get some more info on it shortly.

[thehantavirus]

developed countries have more incidence of cancers then developing countries. Besides health insurance is getting expensive so ppl end up going to other countries for healthcare where it is cheaper

[luvmypyrkayla1]

I thank you so much for making these videos. I was two years out on Nov. 8, 09. I live with ringing and a machine type noise in my head 24/7. I still have an "off" tatse and response to foods. All food was different in the beginning. Now, I have tasted most and am getting used to them - different though. balance is still not right and I dont have total control of all my muscles, kind of clumsy. I still have head discomfort, seems like a long time?! Anyway, ty soooo much for your videos.

[TorontoEdmonton]

Sounds like me, I also have all those things and a few more. When I walk, I feel like I'm drunk. Sometimes people think I am drunk. lol I still haven't gotten used to the taste of food. I also hear that ringing and machine type noise. (sometimes really loud) Clumsy, lol, yep, that's me too. ;-) I get my head pain when I walk or do exercise of any kind. It starts with pressure and develops into pain after about 15 minutes of walking. That's when I start to lose my balance and look drunk.

[aleon1018]

I had read recently that people who have MS can get a large amount of relief by having a shunt or similar put in to relieve the pressure. Wasn't that done for this type of operation as well?

I'm not exactly sure on what their procedure is related to, if not just return blood flow, but I think this is also related. Don't spinal taps also show related normal VS abnormal pressure?

I've read that some mountain climbers need a pressure relief? valve or can't tolerate higher altitudes.

[poknatcmat]

My MRI result was back and fortunately I ahve no acoustic neuroma..the ontly weird thing is they notice a nerve that is in a loop condition (not suppose to be in a loop) and they're thinking it is the culprit of my migraine and sensitivity to light. Our doctor told me that if someting happen along the way (15-20 yrs. from now) I have to see a neurologist. So...for now, I don't have to worry and even if I have an acoustic neuroma...I will stilll be thankful coz I know there is a cure for it.

[aleon1018]

My father had a Gamma Knife treatment that cost him about $60,000 after insurance. I believe he even had to pay in advance.

[TorontoEdmonton]

60,000! OMG! And he had health insurance? Something is seriously wrong with that. I'm a Canadian, so everything was covered and it didn't cost me anything. I feel very fortunate about that. I wonder what would have happened to me if I was an American and had no health care. Anybody can get an AN at any time. Everybody needs health care just in case it happens to you, or god forbid, something even worse, like a malignant tumor. DEMAND HEALTH CARE NOW!

[aleon1018]

I should have mentioned my father had one of the most agressive cancers and it was in the temporal lobe and not like yours.

Someone on another site was asking about it and I linked your video. Don't know if they posted here though.

Many in the US say Canada is hard to get procedures done and have long waiting lists?

I don't know what to believe anymore.

I'm on SSDI and medicare and it has limitations. Too bad the banks have most of the money and power now and run the hospitals?

[TorontoEdmonton]

For serious operations, you don't have to wait. After my MRI showed that my tumor had grown so quickly, I was in the hospital in less than 2 weeks. I wasn't ready to go in so soon but my doctor said it had to come out right away. People I know who needed surgery right away, got it done quite quickly. It's elective, non-life threatening operations that you sometimes have to wait a bit longer for. (arthritis and things like that, not cancer or heart disease or acoustic neuromas)

[aleon1018]

If you notice; Toronto Edmonton last signed in six months ago. That's not a good sign. TY for your video wherever you are.

[TorontoEdmonton]

Hey, I'm still ALIVE!!! lol I just hate coming on here and seeing my videos! lol I cringe watching them, so I just kind of forgot about this site. I was so spaced out in that video. Well, my head was spinning like crazy, I felt drunk all the time. (drunk, dizzy and sick) My whole personality changed, it was quite strange. Now I've gone back to being my normal, shy self. (hence, no more videos) One day I might make an update video but right now, I really don't want to be in front of a camera.

[aleon1018]

Great!

Now how about an update for these people and maybe link it to this one?

Many need reassurance. I should hope there's more advanced non invasive ( cheaper) treatments besides the expensive Gamma Knife. I'm fairly certain my father had to pay in advance, or at least his share?

I tried to look up the going rate, but haven't been sucessful. I still have yet to find out the exact figure he ended up paying or was charged. He had two insurance coverages. Not sure who with.

[poknatcmat]

TY for sharing. I wonder how big ur neuroma. At least I know what to expect...dizziness...not my thing..that suck! I'm still thankful that there's remedy for this disease.

[TorontoEdmonton]

My AN was just over 3cm, so fairly large. Yes, expect to be dizzy and not feeling so good for about 6 months. Then things started to get better but nothing ever goes back to normal. You just have to accept that your life will change and there will be a new normal. You just accept it and adjust to your new reality. You can still enjoy life and do things, you just have to deal with your limitations.

You might have less problems than I did. I wish you luck, think positive.

[SteffanLlwyd]

Real helpful. Thanks brother. I'm diagnosed and trying to decide which route to take from here. The information you give is very detailed. Thanks for telling it like it is. All the best to you...

[TorontoEdmonton]

Thanks. I was just trying to show people what it was like for me and hopefully give people an insight to what it's like. Of course, that was only my experience and others will have different outcomes. Some people have much fewer problems. I seem to have had a lot of problems due to the size of my tumor. If you get it out while it's still small, it's much easier. Whatever the outcome, you just learn to deal with it.

[DRiatrogenics]

I got fucked over by a corrupt ent i have the same symptoms its been 37 years it never goes away.

[poknatcmat]

I feel sorry for u..u should report ur ENT to the Medcial Association.

[TorontoEdmonton]

I can't blame the surgeon for anything. My original family doctor, maybe. He was the one who made me wait but I could have just gone to another doctor, so I am kinda to blame for trusting a doctor and not being more proactive. I should have just gone to another doctor. (live and learn) I definitely would now! Always get a second opinion. Especially for Canadians, we get it all for free, so we have no excuse to not go to another doctor. For Americans, DEMAND good health care! (for everyone!)

[themissedconnections]

hey there, thanks for the video. i had surgery 5 weeks ago and my face is ok but i have some of the other symptoms. i am feeling pretty good, considering... i started writing a couple new songs and almost forgot i was deaf in one ear. i see this video is from a year ago, hope you are doing much better now!

[TorontoEdmonton]

Glad to hear you had few problems. I'm ok but I still have a lot of the same problems, although not to the same extent. I am feeling better but things will never go back to normal. Being deaf in one ear sucks but 1 ear is better than none, so we are fortunate. My face is still messed up but not as bad. I might get another operation on my face. (FREE FACE LIFT, YEAH!!!) I need it. lol Over-all, I'm doing ok but still hope for some more improvements.

[lindseys13]

Hi. I had my AN removed on 24 Jan 2009. Don't think I would be brave enough to post on You Tube but very grateful to those who have. Would love to see an update on how you are doing now. Best Lindsey x

[TorontoEdmonton]

Glad to hear your AN is out. I was brave, just after I had my AN but after my head stopped spinning, I went back to being my old, shy self. Isn't that strange? The AN actually changed my personality for a few months and after about 6 months I went back to being me. I can't believe I posted those videos. lol I was so spaced out at the time, I really was not thinking clearly. (maybe it was all the pain killers?) One day I might make another video but right now, I'd rather not. I hate watching it..

[enyoobee]

I might have an AN. The happiest thing is that it doesn't mean death...whilst I hate rollercoasters, I reckin I can deal with it. Fair play to you, Mr.

xxxxx

[TorontoEdmonton]

YEP, thank god it doesn't mean death. (in western countries) In third world countries, where only the rich get health care, it does mean death. In India or Viet Nam, if you get sick and don't have the money, you die. That's why I thank god, I was born in Canada where everyone gets free health care, whether you are rich or poor. I think health care should be a right for everyone, in every country. Once you get seriously sick, you realize how lucky you are to be Canadian. DEMAND GOOD HEALTH CARE!

[ezekieloak]

@TorontoEdmonton Don't forget the United States in your list including India and Vietnam!

It is excellent you made these videos.

[cindy7771]

My mom had acustic neuroma , it'll be ten years come March that she's had her surgery, it was in her left ear. She had her surgery in Winsten Salem Baptist hospital. She is doing well. She is partial parylized on the left side of her face

[christopher123jenna]

all i can say to you all is may love stay with you if love could make you well i have enough to cure the world my thoughts are with you god bless from graham in hull, uk

[TorontoEdmonton]

Thank you

[esmercp1973]

I hope he gets better. I had this surgery done but I never lost my facial nerve the only thing is that I was so swollen from my face. I had my surgery on 06/24/2005 it has been 3 years and thank god I'm doing great. I really hope you get better soon!!!!!!!!!

[dcognac]

Gary,

So glad to find this update, which is now many months old. Would love to see another update as I am sure there have been even more improvements. I'm going with radiation myself and will begin treatments in 2 weeks. Sharing your case is a gift you give to all who deal with this same goofy thing!

[Ninetybean]

Thanks for sharing. Besst of luck to you

[DrexHollywood]

Thank you, you are very brave and we appreciate you sharing your experience with us. thanks.

[DrexHollywood]

Thank you very much for posting your videos. You are very brave and we all benefit from hearing your experience. Many thanks.

[mmfhuval]

At age 21, I had a 4-6 cm acoustic neuroma removed. Luckily the only problems that I have are deafness to left ear and can not cry out of my left eye. So sorry for all your difficulties you have experienced. Wish you could have had my surgeon Dr. Anil Nanda.

[EdmontonToronto]

yes you do appear to be looking better

[METALGOD3667]

Hey Gary-----looks ok. The facial nerve should come back.

[TorontoEdmonton]

Thanks. That's what the doctors tells me, so I'm hoping for the best. Everything else seems to be improving.