Just returned from ENT... dr suggests VNS...

Hi.. I just returned from my ENT/Neuro-otologist which is a 4 1/2 hour ride, stayed down there 2 days as I was unable to travel after all my testing yesterday. They did the ENG, ECOG and Rotary Chair testing... after all the tests my doctor came in and suggested doing a Vestibular Nerve Section because after 5 years of this nothing has worked.... 3 gent injections, 2 inner ear surgeries... and Physical therapy... he feels that i would benefit from cutting the nerve only.. hopefully not losing the hearing of course.. but cutting just the nerve. The tests showed that right ear is capable of taking over for the left on after the never is cut... i'm scheduled for surgery on 10/19/06.

If anyone has had this done please let me know how you did. I am scared to death. thank you

GinaMc

 

Gina-

I have not had this done as my doctor will not even suggest it on someone that is bilateral (such as I am)-but I did want to wish you the best of luck and hopefully this will be your answer to getting your life back and those symptoms gone!

Best wishes,
Dianna

 

Hi Gina,

I am sorry to hear that you have exhausted all the various types of treatment with no avail. Having a VNS is certainly a big procedure and I’d been quite concerned myself, if I was going to have one. My best advice is to try to get your overall health in as good a condition before the 19th. I know you only have 2 weeks left but do your best. And think positive thoughts. Imagine yourself free of your vertigo and that the VNS will help you get your life in balance.

All of us will try to keep in contact with you but maybe you can designate someone to post on your behalf while you are in the hospital; that way we can keep the communication lines open.

Joe

 

...................

 

Gina: Please rethink surgery.

Today I saw my new neurotologist. I was dx'd in 1980, bilateral in 1995, last formal testing was done in 2003...I won't do it again. : He suggested the labinythia (spelling?) told him no surgery for me! : So he actually wrote me a prescription for Serc and gave me the websites to buy it through Canada. I also asked him about Famvir and Acylvior (spelling) and he said people who truly have menieres disease that Famvir or Acylvior will not work. So, after I get back from my hearing dog training I will be ordering my Serc! (Andrea or any Canadians any suggestions?)

 

Hi Gina, good luck. My doc is suggesting I really think about this too. I have been much better with my meniette, so I am waiting, but I just don't want to go through my life wondering if I will fall apart on an important occasion...what if my daughter gets married and I miss the wedding? My friend met someone who had it and he said he is doing great. I also remember a woman posting here that it got her life back for her. So good luck. I know the recovery is hard, but I think if you expect that then that helps too, you know what to be prepared for. I wish you all the best!!!!! Lisa

 

Gina

There are times I wished I never had the VNS and there are times I am glad I did. It is a long road to recovery for me. I am Bilateral so that is probably what is making it more difficult for me to recover. Some people are driving in 4 weeks-6 weeks. I only drive a few blocks of so.

I only spent two days in hospital,five hour surgery, then sent home. I had a pounding headache for 8 weeks. Started vestib rehab and had to stop due to to much rebounding and unable to recover.

My quality of life is not as it was before the surgery. My balance is shot, I have more drop attacks than before, broke my wrist in the ENT office from a fall.

VNS only stops the vertigo...period. You will still have all the
other symptoms.

Touch decision Gina.

Here is what the I looked like after the surgery.



Best of Luck
Tuck

 

Thanks for sharing that, Tuck. Lisa

 

Gina, have you tried the meniette? I just posted under the meniette topic at length about this, but it has really been a godsend for me, and has taken away so many symptoms. The docs can be skeptical about it, mine was, but it sure has helped me so much, and is the reason I have not had surgery. Lisa B.

 

Tuck, do they know why this made you worse? It sounds like it's just been a negative, when are you happy you did have it done? Where does it help? I appreciate any information you can share, as my doc is suggesting this to me more often too. It is funny to me that he almost doesn't believe that the meniette works for me, even though every time my tube is fixed I have great relief. It's hard having a lot of faith in your doc and then you start wondering.......thanks so much, Lisa B

 

They have know idea why I am worse, just that it is probably my other ear starting to go into full blown MM.

The days I feel really good are when the weather is under a High Pressure system, not before it gets here or as it starts to leave. Just when it is right on top of us so to speak. As a systems moves in and out I am couch bound or even in bed for the next few days.

I did get relief from the nausea and the vertigo about 3 months from the surgery. Then it started all over again. Who knows if they got all the nerve of not. VNG shows not vestibular activity in the right ear, the left is getting worse.

So I would say 90% of my problems are probably being bilateral, however the balance issuses are becoming a major concern, using the qaud cane less and the 4 wheeled walker more and more. I have had to move the furniture around so that I can always touch something for balance input as I walk around the house. Once in awhile I have to use the walker in the house still.

We are starting the process of remodeling the bathroom to make it more balance friendly and mm friendly as well, putting up a long hand rail in the hallway to help me when I need it. Better lighting, and so forth.

It has been a really rough month this month for me,

Danny

 

Hi!I feel for you.The choices we have with this disease are horrible.I am bilateral myself and had the shunt last Febr.It worked for four months.I do not regret having it,but as far as surgery goes this is it for me.The vertigo is back and my balance sucks,but eventually it will get better.I wont even consider the Gent. treatments.This Beast runs its course no matter what.Please consider this carefully.Once the balance nerve is cut that`s it.Take care and God bless!

 

Danny, thank you for sharing that- alot. I want you to know you are in my thoughts a lot, and I am wishing you the best. Have you ever tried the meniette? I know there is someone who posted here that uses it and is bilateral. Best of everything, Lisa B

 

Thank you so much to everyone for your replies. I appreciate every single one, and any advice.

Tuck ~~ Did they do the Nerve cutting before they knew you were bi-lateral? i can't imagine they would.. but i'm just wondering. I know they said my right ear (good ear) is functioning 100% and they are comfortable that it will take over for the other side but i'm just scared that's all. and confused that i might not even have MM... they said the ENG test didn't show much of a dysfuntion in the bad ear which has had 3 gent injections and they don't understand how/why it would show any function. what i mean is that... it shows a slight dysfunction which is probably causing the vertigo.. but it shouldn't show any at all after having gent 3 times. he thinks it might be because prior to the injections being done i had to have 2 perilymphatic fistula leak repairs and there might have been scar tissue that stopped the gent from working properly... makes sence i guess but still. but other than that the ECOG was normal so maybe it isn't truly MM. so frustrating. but again, i also had a head trauma and i was hit right on that ear... so who knows. The rotary chair test showed someting because after reviewing all 3 tests he suggested the VNS... he thinks that might be the only thing left to try at this point. so trying a meinette (sp?) would be out.. and so would another gent injection.

anyway.. that's whay i'm looking at.. thanks for the photo... although it looks pretty scary it gives me an idea of what to expect.

Thank you.
GinaMc

 

I had a VNS in October of 2004. Recovery is slow and sometimes frustrating. I haven't lost a day of work due to MM or feeling bad enough not to work. My eyes are still adapting and my hearing is about 50% in the VNS ear. Over all I would do it again in a heart beat. I am not bilateral and will not be, Good Lord willing. I did tell the surgin to make sure that all the balance nerve is cut, I heard that if some remains that balance problems can continue so my loss of hearing is probably due to this.
Blessed as usual
Dennis

 

Thank you Iowa... I know my doctor said by cutting just the vestibular nerve that whatever hearing is left should remain.. but he did say there is a possibility of having more hearing loss after the VNS... along with some other risks.. but at this point i have been dealing with this for 5 years and he thinks it's time to jus cut the nerve and hopefully be done with the attacks. the off balance feeling i can live with.. i have done that all along since the head injury.. it's just the swimming, vertigo, can't stand up, puking, vomitting, headaches.... and i suppose i could go on... that i can't live with.

how long was your recovery? my doctor said i will be in ICU the first one/two nights and then in the hospital for 5 to 7 days.. but then he put on my papers for work that i should be able to return to work in approx. 2 to 3 weeks... i do office work... do you think that is enough recovery time?

Thanks for your input and i'm glad you are doing better....

GinaMc

 

Gina, why wouldn't the meniette work for you? I guess the best advice is to take your time with your decision. Which is hard, because I would have had the VNS many times if they could have taken me in at the height of my grief. Then when I settle down I am glad I didn't have it....probably how so many feel. The only thing I can say is if they are not convinced (or you are) that you have MM, maybe taking the time to get a second opinion is worth it. Please read the article Linda posted on the other forum here.....I copied it for my husband to read, and it talks about a lot of other things MM can be and how often it is misdiagnosed. A very thorough, thoughtful article. Also, the spinning/vertigo is the symptom the meniette is supposed to most deal with. I was a nonbeliever who it worked for. Good luck with all......just don't rush. Lisa B

 

Lisa... thank you for you reply and I agree with not rushing but I also believe 5 years of this is enough and something has to be done. My story is too long to get into but basically this all started for me when I took a line drive to the head while playing a co-ed softball game and of course was not wearing a helmet... yeah not good i know... but you never think something like that will happen to you. wrong. anyway... shortly after the accident they realized that i was having vertigo because I had a perilymphatic fistula leak in my inner ear and did surgery to repair.. 6 months later symptoms returned and he went in to see if it was leaking again and it was.. repaired it again. i did ok for about a year and the symptoms came back,checked for a leak.. none.. so that is when they started talking about MM... he thought that was what it was because he had already done 2 surgeries for the repairs and felt that now i had MM setting in the ear. decided on the more practical approach of doing gent injections.. had the first one... did good for about a year.. had another one.. again symptom free for about a year... then symptoms came back, had 3rd injection june of this year and again.. symptoms back 2+ weeks ago. at this point they did all the tests to try to confirm MM.. he felt my ECOG was fine and didn't show that I had MM but didn't say it still wasn't possible.. he did say the Rotary Chair test and the ENG showed some problems and felt it was time to just cut the nerve and be done. the meinette was not something he thought would work because he's not completely convinced it truly is MM. He feels the gent probably didn't work because of the 2 fistula repairs prior to the 3 gent injections and there was probably some scar tissue in there blocking the gent from completely killing the nerve.. but.. because i did get some relief he is convinced it must be that nerve and thinks it would be best to do the VNS and be done with it. i have had the good ear checked and it is functioning fine to take over for the bad ear so that is where I am at. ok.. got longer than i expected! sorry.

anyway.... now i'm seeking info from ppl that may have had the VNS done when all other TX have failed. thank you for listening... hope all stays well for you as this is a horrible beast to live with.

GinaMc

 

Giname
I didn't fight the veritgo as long as you have. I was missing 2-3 days a week of work and my love of my life for 32 years was having a terrible time understanding my MM. I did my research and refused to go to a has been Dr. for my VNS. I had two of them before, one did my shunt surgery which failed and one didn't even want to listen to me he just wanted me to listen to how great he was and all his ego stories.
My recover is going to be life long because I believe that we all have the ability to cope with each days problems and joys in ways that make life worth living or not. My initial time off after my VNS was 6 weeks and I could have gone back to work earlier but I am more important than the work my employer wants done. DON'T GO BACK TOO SOON!!!!!!!!!!!!!!!!!! You will have had major surgery in which your brain was and will be affected for quite a while. Recovery time is different with each individual. I was 52 at the time, I would hope that a younger person would recover faster. I went through gastric bypass a year ago and am down 140 lbs and feeling great for a 54 year old. We took our first vacation in 3 years this year and pulled a 35ft camper 1500 miles, rode my VW trike motorcycle about 2000 miles this year. Have more energy and feel better than I have for the last 10 years except for the MM years. Is recovery to normal a chance, thats again individual, I am about 80% of what I would call normal, I am a hard headed german so maybe that slowed down the recover . Don't rush into the VNS surgery, ask how many the DR has performed and how many each year he has done. Ask any and all questions. Pray for guidence and have faith that prayers are answered. I was asked do I have enought faith and trust to have a VNS surgery. I had to say yes and then relax and bask in Gods results. Please email me at [email protected] if you have any questions.
Blessed as usual
Dennis

 

Iowa.... thanks for your story, and the advice on checking on the dr. that is performing my surgery. He is based out of Froedert Medical College in Milwaukee, Wisconsin and his name is Ashley (Philip) Wackym. When I was in the initial consultation discussing this surgery I did ask him those questions as to how many he has done.... how often, etc.. his response was.. too many to count.. and that they usual try the gent first versus surgery for obvious reason but because as I explained the gent didn't work he felt it was time to just cut the nerve to get the vertigo to stop. I agreed.

Just to hear that you traveled 1500 miles and rode your bike 2000 miles this year made me cry... with hope... I just want my life back... or even just some of it. I want to be able to take my kids to the fair and be able to watch them ride the carnival rides, I know I may not be able to ride them myself.. I have accepted that.. but to just go and watch the rides and not get sick.. I want to travel... and be able to know i'll be ok. so many things I can't even get in to.. just getting out of bed and being able to go to work again... i could go on and on.

I know my first week or so of recovery with be tough, they explained to me that I will have severe vertigo the first few days for sure... but plan to keep me in ICU to control the vertigo with high doses of valium... fine... keep me sedated to get thru it.. then slowly get me out of bed and moving... 5 to 7 day hospital stay and then hopefully return home to recovery, he fells i should be able to return to work 2 to 3 weeks thereafter... I just hope so. I know not to push it, I know my limits but yet you just wish you could snap your fingers and it will be over.

Thank you again... if you have anything else to add to help me thru this I would appreciate it... my prayers are there trust me.. and I am very fortunate to have many praying for me too.

God bless
GinaMc