Meniere's Disease

Hi Ray! My name is Bill. Well I no what your wife is going through because I have Meniere's. Ive had it since my early 30's, I am 54 now. But I have it in both ears.When I first got it I had attacks at least 4 and 5 times a month. Was on medication but it didn't seem to help much. now the attacks are few and far between. the only bad thing is , I'm almost totally deaf, but I can hear the ringing in the ears just fine. it dont bother me as much as it use to. pretty much use to it now. I found out if i have an attack I just take a short nape and everything is fine till the next one. I have hearing aids in both ears. when I wear them it seams to muffle the ringing alot because you can hear the different sounds around you. Does your wife wear a hearing aid? Plus it helps with your sence of balance too. But this is just my opinion. Please dont let your wife get her eardrum removed. I no this disease afects poeple in different ways and I dont no how old your wife is or how long she has had Menire's but just give it time. Ive had it over 20years now and its pretty much under controll as far as the diziness and attacks. Also I meditate for about 20-30 mins. a day its helped me quite a bit. But anyway what ever the dissiision your wife makes I will be hopping and praying for both of you. Good luck! Bill

HI Hoochy,
I'm the wife of Ray with Meniere's Disease. I'm 55 and have suffered with this disease for 5 years so. I'm had 3 surgeries to help with the Vertigo (drop attacks), Tinnitus and Hyperacusis (sound intolerance) but the first 2 did nothing to help in fact made it worse. I believe you get to the point in time when enough is enough and you'll do anything to help yourself. That was why I went back to the Meniere's Specialist and asked for help again. She did the balance testing, water testing, spinning testing then order a VEMP test which showed I still had residual feeling from the Vestibular Nerve Sectioning done 2 years ago. The next option was PT or surgery. I choose surgery knowing full well I would lose the hearing in that ear. What I lost (hearing) I gained by no longer having the hyperacusis (amplified sound 24/7) so I couldn't be happier. I couldn't go outside in summer, couldn't open a window to enjoy the fresh air. I was basically stuck in the house with the A/C on and when I'd leave the house it was with an ear plug in my right ear to help a little. I know this was a huge choice I made but I'm so glad I did. I still have Vertigo issues which I'm doing PT to aid with and the Tinnitus is here to stay even in the ear with no hearing I hear a fan blowing 24/7. I asked about it and was told that once you have Tinnitus for 6 months it stays with you for life no matter what they do. It kinda leaves a impression on your brain that can't be removed so I'm stuck with that one but was told to get a CD that plays white noise to help aid with dealing with it and it does help.

I do not wear a hearing aid because the hearing in my left (good) ear is great and I probably won't do anything about the deafness in my right at this point in time. I can hear fine with the left ear and make sure that anyone that talks to me is on my left. I'm a month post op as of the 13th so right now I would say it was a success for me and even if nothing else changes at least I got rid of the hyperacusis and I can enjoy the great outdoors.

Take care.

**HUGS**
Sally

Hi Sal, Just want 2 say thank you 4 the come back. im new on this site so its very hard 4 me 2 get 2 no people. Im very glad that every thing is ok with u. whith i could say the same. I can tell u horror stories about me, but im not going 2 because it will depress u and it depresses me as well. Im just glad that u r doing better. God bless u and good luck 4 u and Ray! Thanks! hooch!

Hi Hooch,
Please tell us your stories (good or bad) when you're up to it. I had 2 previous surgeries and they told me the high success rate 80% for the 1st and 90-95% for the 2nd and both weren't successful for me. The second left me walking with a cane and pretty much staying home so I could control the sound level. Everyone was surprised when I said I need to go back get more help when the last 2 surgeries did nothing and pretty much made me worse but I was willing to take the risk again. The ONE good thing about having Meniere's Disease saved my life: They went looking for a tumor when I was first diagnosed and found a 10 mm (size of a dime) brain aneurysm. A few months later I had surgery to have it clipped and I have to say had they not been looking for the tumor they wouldn't have seen this large aneurysm. Who knows how long I was walking about with this but that's pretty large and I was told had it ruptured about 50% make it to the hospital and of that 50 about half make it through surgery and live. That's the positive side of this disease and I couldn't be happier. Yes, it scared the heck out of me to know I had to have another surgery (had over 30 so far) but it was to save my life so I had it done.

Take care.

**HUGS**
Sally

Ive had my eardrum removed and I started experiancing vertigo.

Hi. I've just joined this community a few minutes ago. I would not like to see your wife's eardrum removed anymore than you two would. MD's are trained only to diagnose, and treat—not to cure anything. I have a sensation like having something stuck in my left ear and have had hearing loss since I was in my mid-20's due to loud noise in the workplace then, and five ear infections in one year as a child. Pressure in my ears always, tinnitus constantly (drive me cuckoo but I ignore it) and I don't hear most of what others seem to hear easily. Past 2-3 months I've experienced brief loss of balance when I move quickly. My MD, too says there's nothing there in my ear. Please don't give up too quickly! Total deafness from a disease should have a cure somewhere. Let's pray and see where we might find some relief. Vertigo to the extreme your wife seems to have may be from diabetes left undiagnosed. Dizziness is a symptom of T1 and t2 diabetes. I'm T2 and have as I said, slight vertigo. So the question remains… is your wife's from the inner ear or something else that can still be treated or maybe even cured? Surgery should, I believe, be a last option only if all else totally fails. Maybe this community can help us. I believe in prayer…absolutely. Sometimes answers SEEM slow to come, but they do come. Let's have a go at it, shall we?

Thank you so much for the reply and insight. We are on specialist #4 with the Cleveland Clinic Hospital Systems. It seems every time we find a doctor they get transferred elsewhere. This surgery would be the last case "solution" to the problems she has as she's done three previous treatments with no success at all. The may be the final change to stop the insanity she lives with. As a gastric by pass patient my wife's blood is tested frequently for vitamins and other labs. There is no evidence of diabetes at all so that's been ruled out a long time ago. Oh we are pretty much at the point that the hospitals and doctors know us by voice. The next test will be April 1st and hopefully have answers. I am thrilled to have received your reply. Thank you!!! This is truly a wonderful community/family and I am glad you're part of it.

We help each other. Finding a Doc you like and trust is a needle in the haystack. How good it is to know she's not diabetic! Gastric by-pass immediately eliminated diabetes for one friend a couple years ago. It is exciting to have this new community. Hearing loss is often funny, but very inconvenient at the same time. As this community grows, we may come up with answers for your wife. I'm hoping with (no pun intended) and will keep you in my prayers. Meanwhile, its snowing for the umpteenth day here so a hearing test will be on my "I'm free!" agenda within the next month or so. Keep me 'posted' on your wife's progress toward a non-surgical (hopefully) remedy. DON'T GIVE UP!

Well it is April 1st and looks like we are starting to get on board with a surgery for next month as all else has failed. I had mistakenly thought they were removing the eardrum but it's actually the inner ear they are removing. She'll be deaf in the one ear but should help with the balance issues and the hyperacusis (magnified hearing - sound intolerance). I'll keep you posted. Thoughts and prayers will be most appreciated for us.

LOTS of prayers & thots for you! Seems like a drastic surgery, but if it helps her overall well-being, so be it! This hasn't been far from my mind since I learned of it, and my earnest prayer is it works for her. Dear in one ear can be lived with once she adjusts. Can't imagine what she has been through. Your loving her thru this is awesome! Yes, please keep me tuned in. I've know several totally deaf people, usually from birth. I learned some sign language years ago. Forgotten most of it from lack of use. One dear friend is blind in one eye but few realize it. Apart from the recovery time, your wife should find relief at last! Tinnitus is with me always. Share the preps that lead to the surgery if you like. We'll walk with you.

HI,
I'm Ray's wife and just found this group after much talk from Ray so I thought I'd join and give my perspective on things. With having Meniere's Disease since June 2006 my life has changed so much. I don't drive anymore, don't work, had to fight for long term disability from my company and then having to fight for Social Security it's been a stressful time for us. Stress is hard one me at best and adds to the suffering of Meniere's Disease. I had never even heard this disease until I was told they wanted to test me for it. I did alot of research and reading to understand what I had. I'm not on my 3rd specialist at Cleveland Clinic (the past two have gone on to bigger and better jobs elsewhere). It's been 2 years in June since I had my last surgery and I thought why not see if there's something else they can do for me. I'm pretty much to the point that I would try anything to ease some of this suffering I do on a daily basis. Can you imagine having vertigo 24/7? That's what I ended up with after the Vestibular Nerve Sectioning 2 years ago from a surgery they told me the success rate was 90-95%. Well I can tell you I'm the 5% it didn't work for and ended up walking with a cane came out of surgery with double vision that took awhile to go away but still happy that I at least took the chance for a better life. I believe when you are feeling as crummy as I do you'll do just about anything for relief. To spend all this time and money trying to figure out why I continue to feel so awful was a pain at best but to at least find out I wasn't crazy and there is something causing this certainly helps emotionally. My options are more physical therapy or surgery. I've done the therapy in the past and it's made no difference to me and I usually end up choosing the surgery after being pissed off that I wasted all this time in therapy I thought why not just cut to the chase and have the surgery then do therapy afterwards. This surgery is going to take me back to the way I was after my nerve sectioning and I so hope and pray I get a better result this time. I was a little shocked when she said at least 3 hours but she won't know until she sees how much scare tissue she finds so it could be much longer. That's a long wait for Ray to have and worry time for him to deal with. I seem to always be the one on the table so I don't have a clue about waiting on someone in surgery but he's become a pro at it anymore with over 30+ surgeries in my life. What I'm hoping for is to come out at least feeling normal or as close to normal as possible. I hope to be able to get around a little better and not having the spinning going on when I'm standing still. I know nothing is guaranteed but I hope with this 3rd surgery to correct part of my Meniere's Disease it at least works this time. I told my doctor hopefully the 3rd times the charm. I'm going to stay positive and work towards staying that way till I hear differently. Prayers would be appreciated and Ray or I will keep you posted as we get closer to surgery as well as afterwards.
Take care.

**HUGS**
Sally

Hi Sally ( and Ray)
I am sorry you have had to live with constant vertigo for such a long time. I only had to deal with it for a week or so due to a weird vision thing several years ago.
Glad to hear your double vision was short lived, it makes life tricky sometimes.
Being the one asleep on the table does indeed seem the easier option on surgery day. I have had both sides of the experience. Getting to the day of surgery is a different matter, though.
After the surgery will be a big time of readjustment and new adjustments. Since your brain has been used to non stop spinning it may take awhile to readjust to a different sensation. I was amazed at how long it took my brain to adjust to being up and active after several months of bed rest last year. My sense of balance was not so good for a while as I was readjusting.
Ray knows he and you have many people praying for you on several sites here. Please do keep us posted.

Thank you so much for your kind words of encouragement. I can't wait for this day to get here already and hope this time it works. I'm pretty much a professional patient anymore having over 30 + surgeries in my life (not all Meniere's related) but since Ray's never had one he gets to be the one waiting on me.
The last time they cut the balance nerve 2 years ago this June they told me it would take a few months to equal out with the right balance nerve and brain stem but my body never adjusted. I'm hoping this time it gets it self together to equal out for me a little better. The one thing we are prepared with this time is we bought a rollator for me to get around with. Ray found it on ebay and it's a lifesaver for me. This one has a chair and basket underneath to hold stuff so if I'm walking and get tired I can sit down. It's great to use around the house and goes through all the doorways in our home. I know I"ll be using it at first but don't mind if I can work myself into going down to my cane or better yet walking free after all these years. I"m going to stay positive and Ray will be here for support & love. He's really great anytime I have surgery and is so watchful over me. Between him and our 3 cats I get the best treatment possible.
The one good thing this time I didn't have the first time was I know what to expect this time and know exactly how I'll feel afterwards so no surprises. Since she is taking me back to the results of the first surgery I remember all to well what my days will be like so it's alot easier to adjust.

Take care.

**HUGS**
Sally