This forum saved my life back in 2000. I could not stop spinning. I tried everything and finally the last resort was a Vestibular Nerve Section. Many patients at that time had the surgery. Most of them were successful. I finally went to the House and Ear Clinic in Calif in May 2002. Since then I have had no dizziness or spinning and my balance is excellent. After about a year my hearing in operated ear went down. I still live in fear of the disease spreading to the normal ear. I feel if that happens I am done. Its like living with time bomb you never know when it will go off. I try to enjoy every day knowing it could all end tomorrow.
Joanne... how long of a recovery did you have after your VNS? I am 2 weeks post as of yesterday and I am still spinning. Just wondering how you did if you don't mind my asking. As far as it going bi-lateral... I was tested right before surgery and my good side was functioning at 100% and I was told it was unlikely it would go to the other side once the nerve was cut.... but... I was also told that they think it is Endolymphatic hydrops and not MM... but to me that seems the same...?? anyway, any info on the VNS you can share would be wonderful. I started Vestibular rehab this week and it's been hell, I feel worse but they said to expect that, that is will get worse before it gets better. did you do any PT? thanks, I'm just waiting for this spinning to stop.... Gina
Hi Gina Everyone recovers at a different pace. The first week I was still feeling somewhat dizzy. When I got home from the hospital it took me 5 weeks to recover. It was tough. I went to physical therapy and needed to get my balance back. The first few weeks I still felt off. After the 5th week I was back to normal. I was able to drive. I had the surgery in May 2002. You have to work hard at the recovery the first few weeks. I also did a lot walking. I had someone go out with me since my balance was not good at first. Keep me posted and let me know how you make out. The harder you work the faster you will recover and lead a normal life again. P.S. You still can get into the other ear the nerve in your good ear is still there. Joan
Hi Joan, Glad to hear the surgery went well in 2002. I know its easier said than done, but try not to worry about your right ear. Just enjoy what you have now. ;D Maggie
Yes if you go bilateral like me and have had a VNS. one day at a time...............I do not know what I will do next Tuck
I'm bilateral Joan and have been since 1996 (first dx 1971) but it has only stopped me somewhat in the last few years, so try not to worry. Remember, this mongrel is different for all of us and who knows, an effective treatment might be just round the corner And Tuck...maybe a remission would be good darlin Maggie
joan, i am unilateral and have it in my right ear. i am completely deaf and yes the thought of going bilateral is always there but if i dwell on that i cant enjoy my life. take it one day at a time and just do all you can. i understand a lot of the guys here are bilateral but they dont let it completely rule their lives. tuck is a great example, he takes beautiful photographs and does all he can to enjoy life. big huggs to you.
Joanne, I remember you very well and am so happy to seeing you post here again. Try not to worry so much about it going to the other ear. I mean why worry about something that may never happen and if by chance it should, you are already in good company. ??? ??? This place saved my life in 2000 too. I am sure you remember me. LOL I remember everything you tried. It is good that people like yourself come back and relight the candle for others. My own attacks have been in remission for over 4 years but of course bilaterally deaf, noisey ears, recruitment and fullness remains. That, for me is as good as it gets and I am living the best life I can. Should you ever stumble and fall and the attacks come and attack your other ear - we are right here to catch you and give you a soft place to land. It is good seeing you here again. I really mean that. You will recognize many others who still lurk around from the old times. dizzjo
Hi Joanne, I am sure you know that anything is possible. My oldest sister who has mm has had it for 30+ years she is unilateral. I have had mm for about 23 years and am bilateral. It is not possible to know if the other ear will be affected or not. Pray that you remain unilateral. BE blessed. Doug
Thanks everyone for your support. Dizzyjo I do of course remember you very well. We both have been on this forum since 2000. There seems to be a very nice group of people on the forum right now. Do you have any hearing left? I am seriously thinking of learning lipreading just in case? The VNS is suppose to preserve the hearing but in my case it did not. I dont think there is anything I can do to restore the hearing in the operated ear. However I have enjoyed the last 5 years vertigo free. I saw the doctor who first diagnosed me and he was very happy to see how well I looked and felt. However I am totally deaf in one ear. He told me it could go into the right ear at any time the symptoms would be dizziness, loss of hearing, and tinnitus. My husband passed away 2 years ago so now with my kids out of the house it would be hard to get those awful symptoms again. I guess enjoy every day. Joan
Hi Joanne, I think we both joined this forum around the same time and we were both having the most terrible time of it. Wow - we both were able to move on, but i stayed here and at another (Coping) forum (several of us were there before Les shut it down - doug and Rick too) I miss many of the friends I made there too. I remember you trying so many things and finally the VNS and returning to work. I have very limited hearing - severe to profound loss. I wear a new hearing aid in the right ear. I depend more on lip reading, facial expressions than anyone realizes. Most of what I miss isn't that important anyhow. I am quite certain I was bilateral all along. I have a wonderful cat that actually alerts me to when I should be responding to a phone or knock at the door or the door bell. I have a note on the door that says it is a hard of hearing zone and to knock rather loud if i don't hear the bell. Joanne, just don't allow the fear and anxiety to take over your body. Take things a day at a time and live and love each day as it comes. That is all we can do and if it goes bilateral, it will most likey run the same course the other one did. I am so sorry to hear you lost your hubby 2 years ago. Being alone isn't easy. Make sure you keep your network of friends and your children and grandchildren close by. Many of us on this site have been able to meet one another. As I recall you were in the Boston area or New England area NYT perhaps. There are really some good folks here and you would love one of those meetings, I am sure. Do you still work as a dental assistant or have you retired? I too have been free of the attacks and that has been the best part of the disease - I hope they are gone for good. I am still on quite a lot of meds. I am gradually going to try to wean myself from a few. Good seeing you again & hi to Dougha too - we are old friends too.
Hi, my name is Lisa and I am unilateral. I also liked your experience of your VNS....thanks for sharing. I live with the same fears. These are the things that make me focus and be more calm: My mom has a terminal liver disease, but she has bounced back and lives well right now. She is very happy and outgoing, although she went through a dark phase with it. Recently her very healthy and happy friend who was 10 years younger died within a few weeks of cancer and stroke........very unexpected and shocking. To me it just goes to show you.......we were all so sad about my mom, who is having a good life right now. We don't know what life will bring but can hope for the best. There are no answers and I hope that if anything this MM gives me the grace to really enjoy every good day I have. The one great thing about my mom's friend is she lived her life to the fullest. I know I enjoy every good day I have in a way I didn't before I got MM. That is a blessing in itself. You just don't know what every day will bring, so we have to be happy for what we have. I too am sorry you lost your husband. I really depend on mine so I have that fear of losing him too and being more vulnerable.......but then I think I would just reach out more. I do find I don't always tell my friends when I am having a hard time, but when I do they are sure there to help me. All the best, Lisa
Hi Joan - I know the VNS has been a lifesaver for you, and I am glad. Try not to worry about the other side. It might never happen and you would have worried in vain.