ok, i've read all the posts on "burn out" which is suppose to mean something like when the vestibular is burned out and there is no more balance function on that side... right? If that is the case then that would be the same as a Vestibular Nerve Section that I am scheduled for surgery for next week. My questions is... if burn out basically means that the vestibular on that side is burned out and you no longer have function on that side and you no longer have vertigo but are left with equilibrium (sp?) problems and all the other symptoms then is that what i am to expect to happen??? The way my ENT and Neurosurgeon explained it to me is when they do the nerve cutting that I will be left with no longer episodes of dizziness or off balance or the dreaded VERTIGO... once the good side takes over for the side that has the nerve cut. Does this sound right... ? I would hate to think that I will go thru a major surgery and after I am recoverd still have the problems with equilibrium and dizziness. any advice anyone? Thanks GinaMc
Hi Gina - Even with the VNS, you would need rehab therapy to learn to adapt to one side being gone. As for burnout, it's different for everyone. It usually means the vertigo stops, but the equilibrium can still be a problem. I have hearing loss, but my balance is not too bad. Others have hearing loss and balance issues.
Yes, my ENT did say I would need VRT after my surgery and i'm sure this will take time for my right vestibular to take over for my left. but i also asked about being on valium which right now is .5mg 3x a day to stop the drop attacks... he feels that after the VNS is done and i'm into my recovery that i may stop the valium. Prior to taking valium I was on a daily dosage of Klonipin .25 2x a day for dizziness and it worked for me, he said i may even be able to d/c the Klonipin as once the problem of the dysfunctional side is gone and the ride side takes over I shouldn't have balance problems after a full recovery and vestibular rehab... i hope he's right. I asked how may of these surgeries he has done and his comment was.. too many to count.. which i believe because one of his specialties is MM so i guess i have to trust he knows what he is talking about! It's just that you always have that worry in the back of your mind that you will go thru something like this and still live a life of dizziness. I don't think I could handle that. Thanks for listening... I appreciate any info/advice I can get. 1 week to my surgery and counting.... yikes. GinaMc
Gina - With the VNS, I think most people have success and are glad they did it. There are always exceptions (like Tucker/Danny -- who is also bilateral). We will hope yours will be the successful kind and give you relief .
Thank you Linda.. yeah I read alot of posts from Tucker and I know his case was a difficult one. and i did have all the tests done on the good side to make sure it's capable of taking over and my doctor feels it is, so again.. i have to just trust him and hope for the best. Thank you so much for your responses.. it helps to talk about this. GinaMc
GinaMc~ I asked for this procedure when I first saw my neurotologist. His response, when the nerve gets cut and the dizziness is coming from the brain and not the inner ear, the dizziness in all probability will continue. He said he has stopped this type of procedure due to his experience with this happening. Something to think about, sorry to bring it up :-\ Sparrow
Sparrow, thanks for the information and that is certainly something to think about... we did talk about any neuological issues and he feels that it is the nerve that is damanged from the head trauma... and the fact that the gentamycin (3 injections) did give me some relief but didn't work 100% was due to having 2 perilymphatic fistula repairs in the inner ear prior to the 3 gent injections and he feels there must be scar tissue blocking the gent getting in there and working fully... that should of given me the same results as actually cutting the nerve. I did get relief... no dizzies... no vertigo and i was able to return to a normal life.. but unfortunately it was short lived due to the fact that I had the 2 inner ear surgeries prior to gent. Definitely something to think about but at this point.. i know i can't keep going on like this. He truly feels the nerve is damaged and that is what is causing my re-current attacks... again... i sure hope he's right! Thanks again for the advice, I will address these issues with him prior to surgery. GinaMc
GinaMc ~ I had to think hard about posting this adversarial position, but I wanted to know if you had considered all options. Your post jumped out at me and I heard my neurotologist's comment ringing out loud and I felt I needed to address this with you. I hope I didn't complicate things, I only wanted to share what my neurotologist shared with me. When is your surgery? Sparrow
My surgery is scheduled for next thurs 10/19/06.. in Milwaukee.. which is about a 4 1/2 hour ride for me.... not good but he is the closest to me and specializes in this kind of thing. I do remember though asking him if this could be all brain related and if it's not inner ear, etc... he feels that since my head injury was over 5 years ago that something would of showed up on the trillion MRI's i have had! but yet... if the brain would cause some problems not being able to reallize or recognize the other side trying to take over that would be another issue. I have never heard of a nuerotologist or nuerosurgeon stating that and trust me... i've been to many before I came to this decision. We have tried everything from the 2 fistula repairs ... to 3 gent injections... vestibular rehab in between and then the dreaded tests, ENG, ECOG and Rotary chair... after all of this ... he feels it was time to just cut the nerve and try to get rid of the attacks/dizziness. I do have a call into their office to ask the question about the brain. I shall let you know. Have u had gent injections or anything like that? or VRT?? what was suggested to you to try to manage your symptoms?? thanks again. GinaMc
I had unusually aggressive bilateral MM from the onset. I basically self destructed my right ear in the first few weeks. All the neurotologists tests showed I had no vestibular function in that ear and diminished function in the other ear. So I would summarize that as similar to having a VNS since it happened so suddenly. I had to take 3 months leave of absence off work to get back on my feet. Many more months to adjust in other ways. I still stagger after 5 years. (But last week I jumped on a trampoline!!!) Expect visual "disturbances". I did the Balance Retraining and Gaze Stabilization Therapy at the Hospital Stroke center where others suffering from head injuries or strokes were learning to walk again. Being bilateral makes it a whole different ball game, but I want to say that the body is an amazing thing and can adapt to all kinds of challenges given TIME!!!!! At first you may feel like you have traded off one set of symptoms for a different set of equally distressing symptoms. But it does get better. I normally tell people surgery should be your last option, but it sounds like you've done your research and made your decision. Best of luck to you and hang in there!!!!
thank you for your response, and i imagine with diminished function in the other ear that you would expect to have balance problems... but it is so good to hear that you were able to get on a trampoline! not something i would ever think of in the past 5 years. thanks for the well wishes.. and i just keep trying to remember that my good side should be able to handle the left so i am lucky that i have that. thanks again. GinaMc
G'day Gina I really hate to put the cat among the pigeons here but did you know that some studies put the risk of becoming bilateral as up to 50% (some say only about 3%) so who do one believe ??? I read that you had the other ear tested and it was A Ok so that is good and by the sounds of it your MM/vertigo/dizziness has been caused by trauma and that going "bi" may not be an issue for you...I truly hope so. My MM has not been nearly as aggressive as HN's but I also self destructed (burn out the oto called it) in the right ear to both hearing and balance 35 years ago (it took 2 years from Dx)...and as HN said the body is an amazing thing and can compensate for losses, mine adapted to the loss of both systems in the right very well (not even constant tinnitus, which is unusual) and I lived a realatively normal life for the next 25 years, travelling, working, studying and having a great time, all without any specialised VRT training ??? until 1996 when the left ear also "caught" the MM My balance was sorta OK then but I had to be a bit more careful in what I did or put myself through to avoid attacks....had to change the lifestyle a bit to compensate, but that was OK...I coped well until about 6 years ago (2000) when it became evident that the vestibular system was "uncompensating" and tests showed very diminished function in that area in my good ear. I was also positive to the anti-cochlear antibody (HSP 70 and anti 68kd....bit of brain fog here and not sure if the names are right...sorry) at that time (not a reliable test though) suggesting Autoimmune Inner Ear Disease and was treated with Prednisone for 3 months until I had bad side effects that put me in hospital, but it appears to have put me into remission for 3 years, as life continued pretty OK with only the occasional vertigo attack and mild balance problems, until an incident at work 4 years ago caused major stress/anxiety and panic that put my world into a real spin for a year. I am now left with major balance and visual problems and am finding it hard to help my brain compensate with VRT. The docs Dx that the vestibular system is gone all together. The hearing is still hanging in there enough to communicate face to face but put me in a noisy, crowded room or have someone talk to me when I can't see their face and I can't hear much at all, am also now sensitive to nioses (something I didn't experience with the right one) and have constant tinnitus in my left ear also It has been a completely different experience this time round and I acknowledge that we are all different and I don't want to scare you, but another question maybe you also need to ask you doc, "the risk of going 'bi' and its implications" You are one brave lady to go through with the surgery, I admire you and do understand your need to get your life back, so best of luck and hope all turns out well and sorry for the long ramble Maggie
