Monday, May 25, 2009

Labyrinthectomy and Meniere’s disease



Labyrinthectomy is a surgical choice for meniere’s patients if there is total or almost total hearing loss. The surgery goes through the Mastoid bone and the inner ear (the labyrinth) is opened up. At this point the semicircular canals are drilled away leaving the nerve balance which is completely removed. No hearing is spared during this procedure.

This surgery requires about a 3 or 4 day stay in the hospital. There is vertigo for a day or two, and then the next 6 weeks there will be an adjustment period where the ‘good ear’ will take over all the balance function.

One of the main problems with this type of surgery is that Meniere’s disease has been known to be bilateral. In other words it will go from one ear to the other.

What has been found to be more effective is the gentamicin injection procedure, which is a non-surgical procedure that can be done in a doctor’s office.

To read about the beginning of my Meniere's journey click here

214 comments:

  1. doctors told me meniere's doesn't go to other ear. ihad labrynthectomy in 2001. good ear is fine

    ReplyDelete
  2. I hope it doesn't, good luck and stay in touch
    David

    ReplyDelete
  3. I had a Labyrinthectomy in 2001 due to a 10 year ordeal with Meniere's in my left ear. My right ear is doing great. I have had a Bone Anchored Hearing Aid (BAHA)since then for the left ear. The only symptom that has remained in my left ear from the Meniere's is the tinnitus. I may be deaf in the left ear,but I have been contending with this tinnitus since 2001(really since 1992 when the Meniere's began) & I am finding as I get older, it is getting worse.The good thing is that my Meniere's did not go to the other ear. My otolaryngologist (at the University of Wisconsin Clinics & Hospital-Madison) told me years ago that if you don't get Meniere's in the other ear within two years of the onset of the first ear, you will not get Meniere's in the other ear.Good luck all you Meniere's sufferers. I know your ordeal & empathize with you.

    ReplyDelete
  4. That is so strange because I just so my doctor a few weeks ago and he said basically the same thing about if you don't get meniere's in the other ear after a few years you probably won't get it.
    How does the BAHA work? I'm curious because someday I may be heading toward getting a hearing aid.
    thanks for the comment and stay in touch
    David

    ReplyDelete
  5. Here are some links regarding the BAHA:

    http://www.cochlearamericas.com/

    http://www.youtube.com/watch?v=dvZBUWMN7Yo&feature=related

    ReplyDelete
  6. Is the bone-anchored hearing aid the same as a cochlear implant? I will check the links, but wanted to ask. I am now looking at choosing between ongoing gentamycin injections and a labyrinthectomy, seeking second and third opinions, and generally terrified. I've been in severe Meniere's crisis for about a year, and although gentamycin injections helped for awhile, the vestibular nerve keeps regenerating, so I could go back to having the vertigo and nausea. I'm at my wits' end...

    ReplyDelete
  7. I can understand your frustration. My first set of gent injections seemed to work for about a year or so, then the attacks came back. I have had a couple of injections this summer but I still have problems with balance and spinning.
    the thing about the laby is that there is no going back and that scares me.
    Stay in touch and let us know how things are going
    good luck
    David

    ReplyDelete
  8. There's something else to consider about the laby surgery: They are now doing research that seems to be heading toward a successful treatment to get the human body to regenerate the tiny hair cells that enable us to hear. If you have the laby, you won't be able to try this treatment and get your hearing back, because you won't have the inner ear apparatus any more. I'm at the point now where I'm debating between maintenance injections of the gentamicin and the laby surgery. I'm scared to death, but I'm really not leading much of a life as I am. It's a tough, tough decision...

    ReplyDelete
  9. Peggy,
    You are right it is a tought decision.
    good luck and stay in touch
    David

    ReplyDelete
  10. I'm making myself crazy about this decision. My doctor is recommending it strongly for me, but I'm afraid it won't result in a net improvement over where I am now. I've been having the gent shots since the winter, and haven't had any attacks. But I'm dizzy pretty much all the time, mostly at a low level but sometimes worse, and my balance is still pretty iffy.
    I talked to a friend who had the nerve section, which has pretty much the same results as the laby, and she says her balance has never fully recovered and never will. She does say she never feels dizzy any more, though.
    Is it worth the risk of the side effects or complications?
    I actually called to schedule the surgery, but the woman doing the scheduling had never heard of the procedure so will have to talk to the doctor before she can set it up. I hope that means the scheduler is new, because I know the doctor has done plenty of these. But I'm still sitting here second-guessing myself.
    Does anyone know what the long-term effects of the gentamicin shots are? How long can you continue to get them? Are there long-term side effects?

    ReplyDelete
  11. Peggy,
    take your time making this important decision. The laby surgery, from what I have read and heard from my doctor, is final you will have no hearing in that ear. As for the balance I have read that some folks also have permanent problems with there balance. So be careful before you make any decisions. Try to exhaust all the least evasives procedures first before heading to surgery.
    I have had 6 gent injections over the past 2 years, after the first 4 in 2008 I had problems with my balance for several months after the 4th shot. Then I had a reprieve where I though that every thing was okay.
    It wasn't because this year I started to get the bad attacks again and once again I had 2 gent injections. I am still having attacks and my balance is still bad. So I don't think that I will be having anymore gent injections. The only side effect of the shots was a little drop in my hearing in my bad ear. Although I didn't have much hearing left in that ear before I received my first shot.
    Take your time and get a second or third opinion before you go under the knife.
    Stay in touch and let us know how you are doing.
    David

    ReplyDelete
  12. I had the Laby about four years ago after going into an episode while driving on the freeway. I have had no other episodes and am very thankful for that. However I have had a light dizzeness ever since. It's like the feeling you start to get after a couple of drinks. It doesn't seem to affect my balance but it is just something else I have had to learn to live with along with the tinnitus. I had the BAHA implanted and after four years I have to say that it hasn't helped me with my directional hearing or my general hearing to any degree that I would recommend it to someone that is paying for it out of their pocket. I have talked to others with the BAHA that loved them, so I guess it works for some and not so good on others. Good Luck, and hope this helps someone make up their mind.

    ReplyDelete
  13. hi david my name is paul i comment on this lat night and asked some qustions but i cant seem to find it on here if not signed in or done this before be so gratefull to hear from someone who can help me...
    my email-- putter_paul@yahoo.com

    ReplyDelete
  14. hi david my name is paul i comment on this lat night and asked some qustions but i cant seem to find it on here if not signed in or done this before be so gratefull to hear from someone who can help me...
    my email-- putter_paul@yahoo.com

    ReplyDelete
  15. Hi Paul,
    I responsed to your comment at http://www.mylifeandmenieresdisease.com/2010/03/hearing-loss-or-no-vertigo-which-would.html

    stay in touch
    David

    ReplyDelete
  16. thanks so much david i copied and pasted above and sent a reply
    paul
    so nice to have somewhere to ask stuff and so much info

    ReplyDelete
  17. Randall,
    thanks for the info on the laby surgery. I have heard from others about some complications after the surgery.
    I have also heard the same thing about the BAHA I guess like you said it helps some and not others.
    thanks for commenting and stay in touch
    David

    ReplyDelete
  18. just had mine done on September 15th all seems to be going well 6 years was long enough for me to deal with this

    ReplyDelete
  19. I hope that everything works out for you, stay in touch and let us know
    David

    ReplyDelete
  20. David,
    I appreciate the knowledge you have compiled and providing a place to share information and encouragement. I had shunt surgery in October but my vertigo only got worse; no evidence to suggest a cause-and-effect relationship. Unfortunately, I developed a nasty infection along the incision -- my doctor thinks I might have been allergic to the type of sutures used inside the ear -- and the combination of vertigo, strong antibiotics and drugs to try to control the vertigo left me nearly like a zombie. I understand "The Fog" many Meniere's patients refer to. I finally had the laby surgery in mid-August. I had no choice but to have the surgery, because the vertigo episodes had me virtually immobilized. The recovery, though, has been slower and more erratic than I'd like. I have NOT had any vertigo. However, my balance is very poor and I fatigue quite easily. If anyone has had similar reaction to surgery, I'd like to hear about it. I hope my balance will get better than it is now, even if it doesn't come all the way back.

    I hope this does not discourage you, Peggy. Your recovery might be quicker, easier ... if that's what you decide to do.

    John

    ReplyDelete
  21. Thanks John for sharing your story with us. I think a lot of people are hesitant about that kind of surgery
    stay in touch
    David

    ReplyDelete
  22. Well, I went ahead and had the surgery. I was terrified, but it went extremely well. No complications at all, and the recovery has been smooth so far.
    What's really interesting, David, is my doctor really listened to all I've been asking her about in recent months, and she heard my concern about destroying the whole labyrinth system. The day of the surgery, she told my husband that she was going to drill through only one of the semi-circular canals, not all of them as is usually done for the labyrinthectomy. This means I have the apparatus left for possible future use if current research comes up with a way to regrow the tiny hair cells to regain hearing, or if I ever need a prosthetic vestibular nerve (if, god forbid, the other ear gets Meniere's too).

    It's been a little rough these past two weeks since the operation, but not nearly as bad as I expected. Hardly any vertigo, no nausea (because I'd already had many gentamicin treatments, so the right vestibular nerve was already used to having to take over my balance functions from the left one). I also had very little pain. But my left ear doesn't feel like it belongs to me right now, which is incredibly strange. I expect that will improve as my recovery continues. The bone around the ear is very tender, and the incision is very, very strange feeling. Not pain, exactly, but irritating. And it's scary to look at. It runs from almost the top of the back of the ear (right down the crease) and goes nearly to the lobe. It's kind of itchy and very tight as it heals.
    I think it was the right thing to do. I couldn't really imagine having gentamicin injections on a regular, ongoing basis, and the nerve kept regrowing. We had tried every more conservative treatment, and I sought a second opinion. We went by the book every step of the way.
    I've been able to do quite a lot already since the surgery, including having friends over for dinner and going to an art show last weekend. This week I'm going to try driving locally and go back to rehearsals with the choir I sing with.
    I can safely say I'm no worse than I was before the surgery, and I have some hope that I will improve. It's very early in the recovery process, and already I feel pretty functional. So let's see how much of an improvement I can achieve.

    ReplyDelete
  23. And for what it's worth, I might still have a little hearing in the left ear. I'm not sure yet. But I had so little hearing in that ear already that it really doesn't make much difference, frankly. That's why it wasn't a consideration in deciding about the surgery.
    When the Meniere's began taking a serious turn for the worse nearly two years ago, my hearing in the affected ear fell off a cliff. In six months I lost nearly 50% of my hearing in that ear. And a friend of mine who had a nerve section in order to preserve her hearing went completely deaf less than a year later.
    Food for thought... with Meniere's, there are no guarantees of any kind. You make the best decision you can with the information you've got, and just hope for the best. *sigh*

    ReplyDelete
  24. Sorry to be posting again, but I just saw one of John's comments. I also have noticed MUCH more fatigue than I'm used to, but I chalk it up to being less than two weeks away from the surgery date (Oct. 5). I really hope I will regain strength as I continue to recover. I'm sorry your recovery has been so rough, John. I feel very lucky so far. I expected it to be so much worse.

    ReplyDelete
  25. Hi Peggy,
    I am so glad that the surgery went well and I am happy that your doctor is listening to your concerns, which can be really important. I really appreciate you sharing your experience with us, I will put it in an upcoming post. Because it is important for folks to understand that some things work for some people and not for others.
    thanks again for commenting and stay in touch and let us know how things are going.
    David

    ReplyDelete
  26. That is the truly terrible thing about Meniere's... each experience is completely individual and unique. Not everyone's symptoms will be the same, and not every treatment will work for every patient. I have a brother-in-law who had several "drop attacks" of Meniere's 10 years ago, was hospitalized briefly, but then went into spontaneous remission and hasn't had a day's difficulty since then. I don't want to scare him, so I don't tell him it could all change tomorrow, but still... it could. It's a hell of a thing.

    Thanks, David. I'm happy to be able to provide information to others about this, even if I can't find my way back to a truly normal life for myself. But I'm going to do my best to get as close to "normal" as I can.

    ReplyDelete
  27. thanks again Peggy for sharing your story it will be a real help to alot of folks.
    stay in touch
    David

    ReplyDelete
  28. Peggy,
    Your story is of great interest to me as I too am facing the dilemma of more gent injections of the laby. How long were you in hospital for and when were you up and walking around? I have two young children so I have to take that into account as well.
    Thanks

    ReplyDelete
  29. Tara, I was in the hospital only for one night,and was up and around the day after the surgery. In fact, I was walking (OK, staggering) to the bathroom the same day.

    How many gentamicin injections have you had? Have you already been through the stage where you get so dizzy you can hardly stand up, and you spend a lot of time vomiting? If so, you might be lucky following the surgery and not have a lot of vertigo/sickness. I didn't, and it's most likely because I had already had several rounds of gentamicin.

    But I have to confess that after about three good weeks following surgery, I have started having bad headaches and vertigo that is interfering with my ability to function. I go back to the doctor on Monday for some tests to see what's going on. So it isn't all peaches and cream. I will report back when I find out what's going on.

    ReplyDelete
  30. Tara,

    I have not replied to your post because my outcome so far has not been as encouraging as Peggy's. That said, I have had no vertigo and I am absolutely clear the surgery was the right decision for me.

    I am 10 weeks out and I am getting better. I still have good days and bad days and cannot find a pattern that sorts one from the other. My balance on a scale of 1 to 7 [with 7 being, oh, Nureyev] is a 2 and that's pretty constant. The way I feel overall is what separates good from bad. On some days, I have high energy level and with it high optimism. I have always been a glass half-full person [some would say the term Pollyanna is more appropriate]. Someone asked me recently how I was and before I could think, I blurted out "terrific" because that had been my standard answer before the Big M. Other days are not so good. Less energy, headaches, little focus.

    If someone told me the rest of my life would be what it is today, I would be disappointed but I would also be grateful and know I can find ways to use whatever gifts I have. That would not be the case if I were standing in the parking lot at Target barfing on the shoes of the nice young man who so desperately wanted to help me.

    I don't pretend to know if that is discouraging or encouraging. But we do know what you are going through is debilitating, frustrating and maybe depressing. Let us help you as best we can.

    John

    ReplyDelete
  31. I find these stories very interesting as I am going through exactly the same thing.I had 4 gent injects then 18 months sympton free until about 5 months ago. I have sense had 2 more gentinjects and no more vertigo.I have also started steroid injects that seem to be helping although it is early.Something else im doing is allergy injects because my dr thinks allergies play a huge roll in my case. I will keep u posted on my journey. If all this fails I will do the laby.Larry

    ReplyDelete
  32. thanks everybody for the comments!
    David

    ReplyDelete
  33. Hi I'm Mary,
    I had the Labyrinthectomy surgery done in May of this year. It help with the vomitting, but can't say it help with anything else. In fact it has given disabilities in other areas. My vision has felled, by that I mean that it take my eyes a long time to focus, I still don't dare look above my head, do to dizziness, I stay tired all the time, and always feel like I'm in a fog. I was diagnosed in 2005 and suffered a long time before the surgery. After talking many times with my doctor I decided to have it done. The diease has a way of consuming it's victims. Every aspect of my life has been affected.I filed for my diability in 2007 and I have my hearing tomorrow, so send the prayers up. This is my 3rd attempt.

    ReplyDelete
  34. Curious if anyone else out there has had the same issues? If so please let me hear from you.

    ReplyDelete
  35. John, I am so sorry... you sound like you are suffering on a daily basis the way I was six months ago. I saw the doctor today, and four weeks after surgery I have some limited nystagmus, but it should clear up, I hope. My balance is definitely not what it was, but I'm no worse than I was before the surgery. Like you, I continue to be optimistic... I can't imagine how I would feel if I couldn't keep feeling that it will get better.
    Mary, I hope your hearing goes well and that you get the disability approved. It can be horrible if you can't get back to something close enough to normal to function. I know what you mean about your vision and fatigue. I'm tired nearly all the time, and my eyes don't want to focus a lot of the time.

    But having said all that, I'm here to say I have very good news... I found a job that will let me work from home for the most part. So we'll be able to keep the house for awhile longer. I'm not 100% sure I can handle full-time work yet, but I must try. If this doesn't work out, I might find myself applying for disability also.

    Best wishes to everyone who is trying to struggle through Meniere's to a better state. This disorder is a terrible thing I could never have imagined for myself. Like John, if someone had told me years ago that I would find myself in this condition, I would have been extremely distressed. But it's here, and I have to find ways to deal with it.

    ReplyDelete
  36. thank you Peggy and John. I've done all I can do with this case and I have a good atorney, so the rest remains in God's hand today. I'm a firm believer that God takes care of his own. Peggy one note to you is this, if you are going to claim your disability do not go at it alone. most attorneys will handle these case and the payment is only if you win,But educate yourself as much as you can before you go.THe Social Security Admin. does not know anything about Menieres therefore they decline claims on a regular basis, the have no clue of t he suffering that we go through. I will let you know what hapens today.

    ReplyDelete
  37. @Mary
    Actually I had an attorney, Gordon Gates, write a guest post for the blog In the post Mr. Gates points out that meniere’s is a listed impairment under ssa. Here is the link http://www.mylifeandmenieresdisease.com/2010/08/menieres-disease-and-social-security.html I would check it out.

    Good luck and let us know how it turned out.
    David

    ReplyDelete
  38. I have had Meniere's in my left ear since 1999. The vertigo was very sporadic until May of this year. I had lost most of my hearing and the tinnitus has been unbelievable. I fully understand what everyone has and is going through. In July 2010 I started having drop attacks. I had more VNG tests. This time they could not induce vertigo in my left ear without the use of ice water and then it was deemed minor. Since I had no hearing to speak of and very little balance in my left ear, it was recommended that I have a labyrinthectomy. Based on all the information I elected to proceed. It was an easy decision for me. I had the surgery on 9/16 and was at home eight hours later. When I woke up from the surgery everything was 90 degrees to the right. Not what I expected. Fortunately, that did not last and everything righted in a couple of hours. The next couple of weeks focusing was very difficult but I was able to walk unassisted within 2 days. It will be 8 weeks on Thursday (11/11) and the only thing I have trouble with is reading. It is getting better. I can read about 3 hours on a computer a day before tiring to the point of having to stop. The odd thing is that when I stop reading, even after 10 minutes, my head will bob for the remainder of the day especially when walking. Even with this I thank God for the opportunity to have the surgery. This experience, while difficult, is nothing compared to the constant drop attacks.

    I would love to hear others experiences with the rehabilitation post labyrinthectomy.

    May God be with you all in your time of need.

    Mike

    ReplyDelete
  39. Mike,
    thanks for sharing your story with us! I hope that all these issues that you are having are only temporary and go away soon. I have heard from others who have had difficult times with their recovery after laby, hopefully in the end things will get better.
    stay in touch and let us know how you are doing
    good luck
    David

    ReplyDelete
  40. I am going in for the Laby, in about a month.I have progressed from dizziness to drop attacks over the past 12 years. Injections had virtually no effect, a shunt worked for about a year. I am 43 years old and hoping the recovery will be better than expected. The doctor tells me because of my age and the hearing and balance loss already, my recovery should go well. I am curious as to the ages of some of the contributors.

    ReplyDelete
  41. Hi Ron,
    I had the surgery done in May. I'm a 52 year old female. About the only thing it help me with is the vomitting. Please talk to your doctor about the vision . My has been affected greatly after my surgery. It normally takes at least 2 or 3 hours in the morning for my eyes to finally focus in the morning. Hope this helps

    ReplyDelete
  42. olá eu sou Iraci(fem.)brasileira e moro no estado de SP,acabo de me submeter a Cirurgia de descompressao do saco endolinfático E sendo evoluido p/Labirintectomia,em Rib.Preto dia 04/11/2010,venho me adaptando razoavelmente bem,embora ainda apresento tonturas/vertigens em alguns movimentos um pouco mais bruscos e em determinado momentos do dia tenho leve visão turva,meu médico está em Congresso e tenho de perguntar se isso ia msm acontecer...tomo Labirin 2x dia e Meclin se tonturas,já acabou os dias de regressão do Predisin 20mg e atb...estou confiante no tratamento e em Deus,pra Q DM ñ c alastre

    ReplyDelete
  43. I'm very interested in the comments about vision... I'm still having difficulty focusing, and my surgery was about six weeks ago. But I am also still dizzy, which is perplexing. I've had several caloric tests to see if the nerve is still active, and it shows no response. But I now have baseline nystagmus on a low level.
    One really frightening thing: Two weekends ago we were out to dinner with another couple, and I had a vertigo attack that lasted about 10 minutes. No nausea, thank god, but the room was rocking and rolling. I have no idea why.
    I called to let my doctor know, and she now wants to do one more caloric on my left ear (the one where I had the surgery) AND she wants to do the ECOG test on my right ear.
    So evidently, she thinks there's at least some small chance that I have bilateral Menieres's now.
    I'm so hoping that this test turns out negative. If I have Meniere's in both ears, I'm looking at total deafness and imbalance a few years from now. I'll be keeping an even closer eye on the work of such doctors as Della Santina and Rubenstein. I might need them down the road. In fact, I'm consiidering putting my name out to them for trials when they get to that point.
    Has anyone heard anything about how that patient who was implanted with that new device to prevent attacks is doing?? That could become very important to me, and soon.

    ReplyDelete
  44. I had a dreadful night full of vertigo and almost-vomiting, so I called my doctor this morning and got an appointment right away. She had their hearing center do a VNG to see what the nystagmus was doing, and it showed that I do NOT have Meniere's in the right ear; rather, I have what she calls a "reactive ear," meaning that the right ear is not done adjusting to the need to control all my balance functions. In addition, she was able to remove a bunch of "gunk" that had built up in the left ear, the one where she did the surgery.
    So now I am going to take steroids for five days to reduce some inflammation that is contributing to the problem, and keep monitoring the situation.
    I'm hugely relieved that I don't have bilateral Meniere's, but not very happy that the problems continue. I'm still hoping for the best, however.

    ReplyDelete
  45. Hi Peggy,
    I hadn't heard of the term reactive ear but it makes sense because if the one ear loses its ability to balance then the other ear is supposed to handle all the balance. That was what I was told after I had the gent injections although I am not sure about it.
    I am also glad that you don't have bilateral meniere's which really have compounded things.
    I have seen some news reports about the guy with the implants and I think they are getting ready to test it.

    Thanks for comment and happy thanksgiving
    David

    ReplyDelete
  46. Well I am booked in for my laby on Dec 18th so Christmas will be interesting. I am 38 ( the day after my op) and my consultant says recovery should be quite quick as my brain will be able to compensate well as I am young. I am rally scared but need to get it done as the drop attacks are getting worse and its rally not fair on my family anymore.
    Hoping I don't suffer with the reactive issues you have been suffering with Peggy. I hope you are feeling better soon and the steroids have helped.

    ReplyDelete
  47. Yes, the steroids are helping, but that's not a long-term solution. I really wonder what will happen next.

    Tara, all the best with your surgery. Be prepared for a lot of vertigo and nausea immediately following the surgery if you haven't had gentamicin treatments before this. I'm a little surprised they aren't waiting until after the holidays for the surgery, but you should feel better after a few days. Just be sure to have lots of help on hand if you are preparing holiday meals and so on. You're most likely going to be off your game for a couple of weeks with fatigue and residual dizziness, but it varies from person to person.

    I found after the first week that the improvement from one week to the next was quite striking. Of course, then the inflammation in my ear started... it turns out the "reactive ear" is actually the left one, where I had the surgery. I might have a minor infection, but am not sure. I see the doctor again next week, and I'll ask her to fill me in on the details then.

    Again, Tara, good luck, and I hope you have a fast, uneventful recovery. I can't say I'm in "normal" condition now, but it's 1000% better than what was going on at this time last year.

    ReplyDelete
  48. thanks everybody for the comments
    David

    ReplyDelete
  49. New to your forum but not to meniere's. 31when I was diagnosed; 46 now and was in complete remission until this July 2010. Can't drive, have drops now instead of original horizontal vertigo. Mine is left ear as well w/tinitis & useless hearing. Just had ENG & waiting follow up w/Dr. Has anyone gone from being well 13+ years & suddenly get sick again? I assumed because of my healthy choices that I was controlling the disease. I've been told it is rare to get meniere's in the 2nd ear but after reading the other posters, I have gone from confident to ??? Was planning surgery after christmas for the obvious reasons already stated. Ugh! I hate making permanent decisions but I agree with mike - I can't live in "drop zone" land nor not be allowed to drive anymore.

    ReplyDelete
  50. Hi Gail,
    From what I understand meniere's can go away for a while and then return with a vengeance. As for getting it in both ears I have heard 30 to 50 percent have that chance.
    I hope that you don't get to the point of not being able to drive that is a fear of alot of us.
    Stay in touch and let us know how you are doing
    David

    ReplyDelete
  51. glyeldI had the Laby surgery done in May of this year, it has taken away a good bit of the dizzeness, I get dizzy still if I look above my head, however now I have trouble getting my eyes to stay focused. Riding in a car has become difficult, the motion still makes me very dizzy, As far as me driving, it has become almost impossible. I can attempt to drive only on cloudy grey days. The sunlight coming through the trees still bothers me greatly. The fog feeling in my head seems to have gotten worse since the surgery.My balance still has not recovered, as long as I move slowly and make no fast movements I'm fine. Mary

    ReplyDelete
  52. Friends:

    I continue to struggle from my laby surgery on August 18. That said, I think it is important to emphasize I am absolutely better off now that if I had not undergone the procedure. No doubt.

    To Mary: I had very similar effects from riding in a car for about 3 weeks but I am driving now it is just fine, at least for short distance.

    Because I still have periods of the Meniere Syndrome Fog, I was afraid I had other neurological disruptions. Fortunately, tests have shown I do not. In fact, my Dr. Ear [my term of endearment, because I think he is really good] said my brain "is perfect." He would not, however, sign an official certificate to that effect. [said tongue in cheek]

    I am having frequent periods of "phantom hearing" in my left [bad] ear. Dr. Ear says that is not common but not unusual; it is similar to body's response when a limb is amputated and the amputee experiences what feels like pain in the missing limb. I hear what reminds me of a very faint radio broadcast; I can kind of catch a word or two, but the sound is just out of reach. It is a little disconcerting. How long will it last? Dr. Ear does not know and says anyone who says he/she does know is not someone Dr. Ear would want to take advice from. If I can hear a phantom radio broadcast of the St. Louis Cardinals winning another World Series, all will be well!!

    I will post separately a story I heard this morning on NPR. The parallels to the young woman who felt after-effects from a concussion and what you and I are going through is remarkable. Blessings to all of you and our community is in my prayers.

    John

    ReplyDelete
  53. From NPR, November 29, 2010


    Here’s text of the story. If you want to hear it, the link is http://ww.npr.org/2010/11/23/131545552/parents-coaches-worry-about-concussion-risks/



    From NPR

    Megan Lindsey learned the hard way about concussions. The 14-year-old freshman suffered concussions twice this fall while playing soccer for a club team in East Lansing, Mich. On Sept. 19, while playing goalie in an important match, Megan had dived to stop a ball when the play went wrong: The offensive player's cleats hit Megan smack in the face. She had a concussion, too, but at the time that didn't seem like such a big deal.

    "All I could really think of was how much pain it was on my face," she says.

    Her parents took her to the doctor, and she was soon cleared to get back in the game. But three weeks later, on Oct. 9, she got clobbered again. Same scenario: A girl was coming toward her, and Megan went out, got the ball, and went down.

    Megan's mother, Barbara Wirtz, couldn't see clearly from the sidelines. But it was clear that something was terribly wrong: Megan was unconscious. "Her lower body was shaking," Wirtz says. "And then when I got closer, I could see that her upper body was shaking as well."

    Wirtz rode in the ambulance to the hospital, where doctors tested Megan's reaction time and awareness. She was diagnosed with a seizure and a concussion, and sent home. This time around, though, Megan didn't bounce right back.

    Though she went back to school that Monday, she had trouble with the light and noise in the cafeteria, and trying to watch a movie in class gave her a headache. Her friends told her she wasn't always thinking or speaking clearly. "I would say something and would think it made sense," Megan says. "But my friends would look at me like I was some crazy person."

    Rebounding From The Concussion

    Concussions used to be described as a brain bruise, but doctors now like to say that it's a problem with the brain's function, a problem that can't be detected by MRI or CT scan. When the brain suddenly slams to a stop, the brain's neurons all fire at once. That surge of energy temporarily messes up the brain's electrical and chemical signal system, making it hard to think straight.

    Megan's parents took her to see Jeffrey Kutcher, a neurologist at the University of Michigan who specializes in treating sports concussions. He was especially concerned because multiple concussions greatly increase the risk of permanent brain damage. He told her the only way to recover from a concussion is to rest. So Megan dropped soccer, and saxophone. She cut way back on schoolwork. She even gave up texting.

    Girls are more likely than boys to end up in the emergency room with concussions from playing soccer or basketball, according to a study published earlier this year in Pediatrics. No one knows why; it could be that girls' brains are more vulnerable, or it could be that girls are just better at "fessing up" when they're hurt.

    Kutcher asked Megan to work on strengthening her neck and torso, with the idea that that might make her less likely to get knocked around. And he gave her a plan to ease back into exercise, starting with slow walks.

    Benching Brain Injuries

    Until very recently, parents, coaches and players were often clueless about the risk of concussion — "getting your bell rung" and getting back in the game was admired as "playing tough." Some school districts and sports leagues have started to make concussion awareness training mandatory, but many do not. The federal Centers for Disease Control and Prevention has launched a nationwide awareness effort called Heads Up, which aims to make it clear that anyone who is even suspected of having had a concussion needs to get out of the game and go to the doctor. Congress is in on the act, too.

    ReplyDelete
  54. Good morning to all; I am scheduled for laby surgery DEC 15. I am full steam ahead unless anyone wants to stop me. I need my life back. Thank you David Stillwagon for creating a forum for us to share our thoughts and experiences.
    Gail

    ReplyDelete
  55. Good luck Gail, 3 days before my laby!, Hope it goes well and hope you aren't as scared as me.I agree completely about getting your life back, I can't wait but still am worried about the surgery, rather than the after effects.
    Will be thinking of you,
    Tara

    ReplyDelete
  56. @Gail,
    Good luck on your surgery. I hope everything works out ok!
    David

    @Tara
    thanks for the comment
    David

    ReplyDelete
  57. Hi there,
    I am new to your blog but truly appreciate the venue. I had a laby 10 years ago and it went extremely well. I was back to my normal self 100%. No side effects and I never went to see any doctors again. Now, after such a long time, I woke up dizzy 2 weeks ago so I am going thru testing once again. I am curious to learn if anyone has had a similar experience. My doctor seems to think it might be positional vertigo. I am getting more fatigue and the dizziness remains in the background. My equilibrium seems to be fine one day and horrible the next.

    ReplyDelete
  58. Hi,
    That really is strange not to have any problems for 2 years and then they come back again. From the comments that i have received after the laby the problems seem to be with mostly balance.
    Hopefully someone else will relate to your situation and leave a comment.
    stay in touch and let us know how you are doing.
    thanks
    David

    ReplyDelete
  59. Anonymous, do you have difficulty with dizziness when you look up over your head, or when you turn your head suddenly from side to side? Or when you bend down and straighten back up? I had positional vertigo for awhile, and it was worst when I had to tip my head back to look overhead. About 85% of people who have positional vertigo (BPPV - benign positional paroxysmal vertigo) get relief from a maneuver called "Epley" which can be done by someone in a hearing center, or there are also exercises you can do at home to help resolve this problem.
    To tell you the truth, though, what you are going through doesn't sound positional to me. If you are fatigued and the dizziness is always there in the background, that sounds different from BPPV. Have you have a caloric test on your ear where the laby was done to make sure the nerve is still inactive? My doctor told me she had one patient whose nerve grew back after a laby. Not to scare you, but there are several avenues worth exploring here.
    Good luck!

    ReplyDelete
  60. Peggy,

    Thanks for the information. I already had my MRI and all was normal. I am going on Monday for all the testing. At times, it feels positional because it happens when I move my head. I worked out yesterday and I could feel that perhaps I shouldn't have. I have also read that it is possible for the balance nerve to make new connections after a laby. At least, there are more options nowadays than 10 years ago. And I had 10 perfect years. So for everybody out there getting ready for the laby, BEST decision I ever made, no regrets.


    Thanks, David, for your kind words. I will let all know how it goes.

    ReplyDelete
  61. thanks everybody for the comments and information
    David

    ReplyDelete
  62. Two months after my labyrinthectomy, I am still experiencing inflammation in and around the left ear that's causing dizziness and disorientation, as well as some pain and nausea. We've bombarded it twice with prednisone to get the inflammation down, and now are trying to keep it down with a constant diet of diazepam (valium). This is getting very frustrating for me. I can't concentrate on my new job very well, and I have a very difficult time focusing my eyes on a computer screen all day long. I'm going to the eye doctor next week to see if a set of "prism lenses" will help with the vision, but I'm at my wits' end about the vertigo and the inflammation that just won't go away.
    Anybody have any experience with this? Prednisone just isn't a long-term solution, and it makes me have wicked mood swings.

    ReplyDelete
  63. Hi Peggy,
    It sounds like you are going to a rough time right now. I have taken the prednisone before it definitely puts you through the ringer. Hopefully your meds will help you through this.

    I will put this in an upcoming post to see if anyone else has had this experience.
    David

    ReplyDelete
  64. Hi From Gail:
    Count down to Laby Surgery - tomorrow morning for me. Still feeling confident with my decision. Was reading through the recent postings and wanted to mention as a person who has had Meniere's now for 13+ yrs, I have had more people than I can count "think" that they have it as well. I ask a few questions [pseudo diagnose them]and rarely have any of them ever turned out to have our disease. Having said all this, it is a reminder to me that we can have dizzy spells [completely un-related to Meniere's]. Even my Mother has been suffering with a stuffed up ear [left - same as my affected ear] and vertigo. Dr put her on a steroid and it went away - hearing came back. My point is that while she was certain she was having Meniere's attacks, she really was experiencing a severe inner ear infection. I am just wondering if the guy who had the surgery 10 years ago might be experiencing something completely unrelated - like my mother, like so many who have had Meniere symptoms and then only to find out it is nothing more than an inner ear infection, etc?
    Okay, my blogging friends......I'll write as soon as I have any news for you. And to those of you who are new to this forum and are reading through all of this for the first time:
    This is the craziest disease and unfortunately, you are not alone. Each of us has had to learn and sometimes, relearn how to cope, change the way we eat, sleep, exercise, etc. I would never have thought in a million years that I would ever need surgery [that Meniere's would rear back up again after lying dormant for 10 yrs.] but here I am. So don't lose heart; continue to be pro-active in healing yourself - whatever that requires. Remain positive and don't ever feel defeated. It's a miracle that anyone can stand when I really think about how the human body works with/against gravity. We just have to work a little bit harder at it!

    ReplyDelete
  65. Hi Gail,
    Good luck on your surgery!
    You are right that you definitely need to be sure that it is menieres disease and not something else. At least if it is something else it might be easier to handle than this disorder.
    And thanks for your positive advice to all meniere's patients. A positive attitude can be very powerful.
    Let us know how things are going.
    David

    ReplyDelete
  66. I had the surgery in 2008 to remove right inner ear. I have had problems with vision and balance @ speech. I am 73 right now, my life has been forever changed for the worse.
    good luck to everyone

    ReplyDelete
  67. thanks for the comment and good luck to you also
    David

    ReplyDelete
  68. Dear David & our blogging friends:
    I am officially our CHRISTMAS MIRACLE! I purposely waited to blog until today [post surgery 1 wk] because I wanted an "all clear" from my surgeon/Dr. When I walked straight [yes, I used the word straight] through his door [unassisted by my husband or anything else] his words to me were, "let me be the first to congratulate you; you no longer have Meniere's Disease!". And I wholeheartedly believe him - because as he promised, "once I remove the affected area [cut the balance nerve] your body will naturally learn to compensate for the loss". He also cut my hearing nerve [but I have to say that I can still hear through that ear so he is having me come back in for a hearing test - will report after that visit in FEB 2011]. He did something unique [to me, anyway], when he shaved the skull bone away, he kept the shavings and formed a paste or wall or whatever you want to call it and placed it in the cavity area so as to completely "shut the door" from my inner left ear to the cut away balance nerve. He said that he does this to ensure that "if the nerve re-grows, it cannot reattach itself because of the boney barrier".

    Okay, now here is why I am the Christmas Miracle: waiting at home were of course a wheel chair, walker & cane. I breezed through all three in less than 4 days!!! I could have actually been quicker but my family was holding me back, fearful that I could hurt myself. I'll tell you, after falling so many times from Menieres, it is the one thing I am NOT afraid of. So being a little "tilted" [if 12 o'clock is straight up - I was tilted to 1pm] I just knew to keep walking - that what I was seeing wasn't "real" and that as long as nothing was on the floor to trip me, I could walk confidently.........and I did, and I did, and I did and then I walked right up those stairs [refusing the elevator at the med center] to his office and the 2nd thing he said to me was, "I am impressed but I am not surprised. I knew from our first visit that you were a very determined woman.".
    I want to reflect on 2 things that happened while I laid in the pre-op bed:
    #1: The nurse told my husband that her Mother's favorite Psalm is 91 and that he should read it to me. Which he had already brought his Bible and had planned to read me my favorite verses. Psalm 91 PERFECTLY FIT my situation.
    #2: My Doctor/Surgeon said, "I have been looking forward all week to performing this surgery for you, Gail". How fortunate to find a physician who is also blessed with the gift of compassion.
    Lastly, I am un-medicated, wearing semi-high heels, putting on make-up, went out to lunch, to the movies, out to dinner out of town - literally, I had surgery on WED and on SUN I was already resuming a normal life style.

    My doctor then checked my vision and said I have one area of astigmatism [in my balance/vision] that I will need to work on and other than that, he expects that by the time I come back for the hearing test in FEB, I will be jogging again.
    My vision is now at 12:30pm - such a slight tilt, it is hardly worth mentioning but I don't want to say that everything is perfectly normal. I can read for long periods of time. The only thing I notice [besides the normal don't swing the head too fast, fast jerky motions, etc] is that TV watching is a little difficult [even though the movie theater went really, really well].
    Okay, I am going out to a Christmas Dinner party tonight to celebrate this wonderful gift I have been given - a MENIERE'S FREE LIFE. I pray that everyone who reads this blog is encouraged and is not afraid to "GO FOR IT".......Merry Christmas & blessings to you all~ Gail in California

    ReplyDelete
  69. Hi Gail,
    That is wonderful news and I am so happy for you! It would be great news at any time but at christmas it seems extra special.
    You seem to have a really good doctor who knows how to deal with patients by keeping them informed and working with them.
    Don't do to much at one time, I know that it is tempting but take care and definitely let us know how you are doing.
    Merry Christmas
    David

    ReplyDelete
  70. I wanted a chance to post my experience with having Meniere's and having a labrinthecomy.

    As Gail posted I had a similiar experience. I was walking around same day I returned from surgery. Yes it was distracting as the world appeared to jump around as I moved, however my doctor was very clear that I needed to move around especially if I was dizzy. So I forced through it, forcing myself to look around, move my head as much as possible and completed my physio excercises religiously!
    I was back to normal activities within the week, I couldn`t drive yet but was heading out with friends. I was able to resume driving withing two weeks of surgery and back to work after three.

    My balance is still a little off which can be frustrating but I know that is something that with practice will get better.

    For those of you trying to make the decision, the thing I am most grateful for is I am vertigo free! Which no one truely understands how frustrating vertigo can be until you`ve had it. Imagine never having to worry again that you may get an attack.. For myself the surgery is completely worth not having to stress about that!

    I was lucky enough to see a neurologist in the first week following my surgery. He was able to help me understand recovery better. One thing that he made very clear is if a person spends the first week after surgery laying down they often will feel dizzy for the rest of their lives. He told me that the first 30days is when your brain is learning to compensate and during that time it is imparative that you move your head and complete physio excercises. He told me that after those 30days if you haven`t done the work necessary that there is very little you can do. Essentially recovery is very much in the patients hands! (wanted to share that since it may be helpful and could explain why other people often complain about persistant dizziness after surgery)

    Best of luck!
    Sheila from Canada

    ReplyDelete
  71. Thanks Sheila for sharing your experience with the laby surgery. It will be a big help to those who are deciding what to do
    thanks again and stay in touch
    David

    ReplyDelete
  72. Sheila, thank you for sharing your experience with us all. One thing I did not receive was the information you are speaking of, Physio exercises. What are they? I will call my Dr today to follow up as well but I am curious what exercises you are doing. I am not driving yet but I am completely mobile. I have been doing my own "eye exercises" assuming that it was a good idea to stimulate brain/eye nerves as much as possible. Also, I started taking Dramamine 2 days ago to help with the slight feeling of nausea I wake up with [morning sickness] which has helped ALOT. But I am concerned that the Dramamine is providing to much comfort and could be inhibiting my brain from doing "all the work". I am also curious if anyone had a vision change after surgery? I wore eye readers to the power of 1. I now have to wear the power of 2 in the mornings and then by afternoon, I can wear the 1's again.
    One last comment, My husband David [not this David, of course] said that I should be certain to post that the likely reason that I recovered so quickly is also because of having had the disease for so long, my good ear had already taken over most of my balance anyway. I have to agree with him and do not want someone who has recently gotten Meniere's to think that this surgery is a quick fix if they need to get back to work. It could be possibly a long rehabilitation process~
    Gail in California

    ReplyDelete
  73. Gail, I've had significant changes in my vision over the past year, from before the surgery, but after I started having really severe Meniere's attacks on a regular basis. I'm sure there's a link.

    There is something called "vestibular rehabilitation therapy" you can do, which involves balance exercises and other exercises that help you to stabilize your gaze, which is a big factor in your balance. It's part of helping teach your remaining vestibular nerve compensate for the loss other one that was severed. Many rehab centers have at least one physical therapist who specializes in this. Your doctor could refer you to someone for this and write a prescription for the therapy.

    You and David are correct about the quick recovery. I had already lost most of the vestibular function in my left ear from gentamicin treatments, so when we did the surgery, it was really nothing new for my other ear to take over. Been there, done that.

    Something else my doctor prescribed for the mild vertigo I was having after surgery was meclizine, a variation on dramamine. It's a motion sickness medication. But it made me feel like I was about to fall asleep all the time. Awful. BUt it will come in handy when I need to sleep on a long plane trip. ;-)

    More recently, the doctor realized I had ongoing inflammation in the ear that had the surgery, and she prescribed a short course of prednisone to take the swelling down, and followed that with a long course of valium, which cuts the transmission of the signal that tells the brain you are off-balance. I've felt much better physically since starting that. I'm just afraid of what will happen when I stop the valium, which is not something you can take forever -- you will need more and more of it, and become dependent.

    But definitely ask your doctor about vestibular rehab therapy. It could help.

    ReplyDelete
  74. I have bi-lateral Meniere's...diagnosed when I was 22 at Oschner's. I have had hearing aids in both ears for years. In 2003, after supposedly being in remission, I started having drop attacks...couldn't drive, deathly ill, etc. My surgeon wanted to do a stint..I said no, that I wanted a labrynthectomy and he did it...I was driving within 2 weeks. Except for some residual tinnitus, I am great- no more vertigo, thank God!!!! My right ear has not deteriorated more- I wear a hearing aid and I am doing great. My experience may be unique but my advice is to do your own research and make your own decisions...regardless of what the doctors say. I refused to live my life constantly worrying about falling, endangering myself and my loved ones, etc. Take the time to now what you want and go for it. I have been there and I am ok now!

    ReplyDelete
  75. Hi,
    i am so glad to hear that you have had good luck with surgery. I hope things continue to be good for you.
    thanks for the comment and stay in touch
    David

    ReplyDelete
  76. hi, my name is judy and am so glad i found this site. have been suffering since 1995 and am going in Feb 9th for a Labrynthectomy. Reading how everyone else has done makes me feel much better about my choice. Knowing there are others like me gives me hope.

    ReplyDelete
  77. Hi Judy,
    good luck on your surgery! Let us know how it turned out.
    David

    ReplyDelete
  78. Judy, here we are on Feb. 9, and I'm hoping your surgery is going well. I've got my fingers crossed for a quick and painless recovery and restoration of balance and better feelings.

    Be patient. It was a few days until I could walk reasonably well on my own, and bathing was very frightening. But after a few weeks, my ear felt like it belonged to me again and I wasn't so afraid to wash my hair, turn over in bed, and so on. You will probably feel very fragile for awhile. At least, I did. But it passed.

    Now, almost four months later, I'm definitely much better than I was before the surgery.

    If you have any questions, post them. I've been there and can share my experiences, even though they might not be the same as yours. I can certainly empathize.

    Peggy

    ReplyDelete
  79. Judy,

    I certainly wish you well with the surgery and recovery. I had laby 8/18/10 and have said in previous posts it absolutely was the right thing for me. My recovery has been erratic but that should not discourage you. As you can see, there are many people, like Peggy, who have done wonderfully. Anything I'm dealing with now is less daunting than wondering every minute if vertigo is about to seize me. This is a very supportive group. I've visited a lot of sites that discuss Meniere's and this is the place where people are honest and encouraging. You can find plenty of places where everything is doom and gloom and that does not help me. I want to hear stories that inspire me and show life goes on. Let us know how you are.

    John

    ReplyDelete
  80. I had the Laby surgery on 9/16. I too believe I would do it again without thinking. I was diagnosed with meniere's in 1999 and had vertigo infrequently (once every couple of months) until 2010. In May it started occurring with greater force and by July I was have drop attacks almost daily. At that point I knew something had to be done. It was a journey through the medical system but I finally found an ENT with knowledge and experience with the disease. I did not have to think of the surgery's results as I knew it had to be a better place. I can say almost 5 months later that I am in a better place. It is nowhere near perfect but I do not have the evil vertigo. I am still easily fatigued and get an uncontrolled head bobbing at times. It is getting better on a month to month basis but I am not quite "normal" yet. People should be aware that the journey after the surgery is not going to be easy for some. It is difficult at times and I wondered many times where I would end up. I am still not positive but can say it is better. The doctor says it can take up to 12 months to recover. He says my progression has been very good. My balance is very good and tests show that I have become well compensated in balance. The advice I can give after surgery is to keep pushing forward and move your head and line of sight into new positions everyday to assist the brain in its relearning process.

    God bless you all!
    Mike

    ReplyDelete
  81. Mike,

    Good luck and keep pushing!!

    Your results since surgery and my results sound very similar. I also have a constant battle with fatigue. My eyesight has gone in the toilet; that could be just the result of age [I'm nearly 60] but the deterioration over the last 18 months in greater than in the last 18 years. I have worn glasses/contacts since 12 years old. One for instance: the reading glasses I use when I wear my contacts has gone from a +1.25 to +2.75/3.00. I also have frequent headaches and hope that will clear some when I get my new glasses next week. You are ahead of me on regaining balance and I hope to catch up.

    Would you mind if I ask how old you are? And anyone else who cares to share that.

    Again at the risk of scaring off anyone who is contemplating this life-giving surgery, I have to say that most of my symptoms read like a case of depression. I have been on the standard dose of Celexa [40mg/day] for nearly a year. At the urging of a close friend how is a MSW and certified counselor, I have made an appointment with a psychiatrist for an evaluation. If anyone has gone a similar route and wants to share, I would appreciate it.

    If you're not comfortable posting on this blog [though this is an incredibly supportive community] but would share by email, I am at j**d**r^^at^g!M!ail dot com.

    John

    ReplyDelete
  82. John,

    I am 50. I hear the older you are the more difficult and longer the recovery. With that said, I also hear that you WILL recover if you keep pushing forward. Do something new each day has been my mantra. While difficult, stay positive and look at the progress you have made month to month and not day to day. I know that is hard but recall the pre-surgery days and how difficult they were to function in a normal manner. Your brain has to relearn 60 years of experience. Meniere's is an emotional experience so leverage your friends and family and talk it out. I went the depression route (8 years ago) in the early days of the disease. I found that I felt worse on the drugs than off. I tried at least 6 different drugs. It may have been the doctor but I can say I will never do go through that again. I will keep you in my prayers.

    Mike

    ReplyDelete
  83. Mike, I'm 52, and the recovery wasn't bad at all for me. I would guess it has more to do with the overall state of your health and your individual body's ability to "bounce back." Probably also the protocol(s) your doctor has followed.

    I'm struggling a bit now with medication. I was having some problems after the surgery with ongoing dizziness and did have an episode of vertigo/nausea that resulted from inflammation in the ear that had the surgery. I took prednisone to get the swelling down, then valium for two months to suppress my system so the inflammation wouldn't recur.

    Now, however, I've stopped taking the valium and am having withdrawal symptoms (headaches, stomach problems, nausea, insomnia, dizziness, irritability, and incredible anxiety with chest tightness). So the doctor is prescribing another anti-anxiety drug (librium) that I will use to taper off until I can go drug-free again.

    It can be a long road, and incredibly bumpy. I hope everyone on this board is doing better than they were before.

    Question: Is it just me, or was 2010 the Year of Meniere's? I keep noticing how many people say they had Meniere's for a very long time, with only occasional flare-ups, but that 2010 was a horrible year, with multiple, frequent attacks. What was it about 2010???

    ReplyDelete
  84. hi it is judy. two weeks after surgery and this 64 year old is doing great. only spent two days in hospital came home on friday and by monday did not need the walker anymore. i think because i went 3 rounds of shots into the ear my brain was already used to having just one balance reference point. the ear is still a little numb and feels like it is plugged up but no vertigo yeah!!!! even feel well enough to drive but promised i would wait to get cleared by doctor which is in one more week. thankyou every one for writing and i know this was absoulty the right thing for me.

    ReplyDelete
  85. Congratulations, Judy! I'm so glad you're doing well and that you are sure it was the right thing for you to do. I agree that having the gentamicin shots before the surgery helped make the recovery easier... I had the same experience.

    About your ear and numbness: My ear didn't feel like it belonged to my head for a couple of months. The skin felt weird to the touch (very rough) and there was substantially reduced sensation in it. I was very worried.

    But over time it began to feel more as if it belonged to my head again (for awhile it was as if they had simply stuck a dead ear back on with thumbtacks) and now it feels perfectly normal. I had my surgery in October, and I think by December it felt like "my" ear again. The nerves take time to make the right connections again -- remapping, I think.

    On the driving, I'm still afraid to go on highways, but I was doing short distances on my own within a month.

    I hope your recovery keeps going as well as it has begun!

    ReplyDelete
  86. Hello to all from Gail:
    First let me say to Peggy - YES, there is something odd about the resurgence of Menieres. I say this because in all the years I have been a "referal" to the local doctors [to their patients], I have had MORE people come to me in this past year than all the years combined [I had Meniere's for 13+ years]. I do live in a farming community and have often wondered if there is any corelation? John: I am 46.
    But back to the reason I checked in with you all today; 3 months post surgery and I cannot stress enough that being as active as possible is the fastest way to gain your life back, however small that may be each day. On your sad days, just do some head/eye movements. Something...anything....even if it is something so goofy as walking backward into the pantry to reach for the cereal.
    I am in YOGA 5 days a week and 2 wks ago, I downhill ski'd for the first time since the surgery. Wow! I actually ski better than before. Perhaps becuase I wasn't thinking that I could episode at anytime. Back to the YOGA, after only the first class - I had so much more range of balance - my energy level felt like 300% of what I had been.
    I know the "blues" can be hard...especially with this wet late winter/spring we are having. But hang in there.
    Gail in California
    PS: Bicycling remains the most difficult for me; I will not give up. Riding is fine - it's the looking behind for cars that is quite the swerving experience~

    ReplyDelete
  87. Hello to all
    Thank you for your accounts of living with Meniere's
    I've had Meniere's for over 18 years. The spells of dizziness and nausea weren't frequent until 2008. Then they came on really bad - sometimes twice a day. Found an ENT in Cincinnati who specializes in Meniere's. Went through a time consuming process of drugs/Meniett's device with no success.Finally the Doc and I agreed to a shunt surgery - I still had partial hearing in my the bad ear. The surgery was a success for almost two years (according my Doc this was on the short end of the expected effective time for a shunt. He's had some patients shunts procedure last for five years.
    When the shunt failed I was back to having vertigo and nausea attacks once or more times a week. I was really depressed and housebound.
    My doc ran tests and said that the next option for me a was the labyrinthectomy. He's so busy that I had to wait 3 months to get the procedure done - November 2010.
    I went in early morning and was out the next morning. NO MORE DIZZINESS. I had to learn balance like everybody says, but my Doc has encouraged me to be active. I'm back to working out 4 days a week and last month went skiing for a week. I was on the slopes 5 hours a day, and I was so focused on skiing that I wasn't aware of my balance problems.
    I did a really good faceplant in the snow, not because of my balance, but due to louse skiing.
    I agree with Gail's post - being active is the best therapy. I started on the treadmill 4 weeks after the surgery - walking a 2 mph and holding the sidebars, staring straight ahead at first. Gradually increased speed and duration, moving my head. It all helped me.

    ReplyDelete
  88. Well, you guys are giving me more of an urge to get out and start exercising. I've been wanting to do it for awhile, but this winter was so awful on the East Coast that walking on the road was impossible. Now that it's warming up and we are almost rid of the snow, maybe I can finally do it.

    For me, the dizziness comes and goes. I'm more frustrated than I can tell you to see that the nystagmus has never really gone away, unless I am on regular medication. But maybe I can work around that. I hope so. I'm sick of all this.

    ReplyDelete
  89. So glad to find this site! I am a 63-yr-old woman who's Meniere's was in remission more than 5+ years after ten years of off-and-on attacks. Early drop attacks were long,and included much vomiting, vertigo, sustained dizziness and focus problems. I also could feel them coming on, so I could prepare myself.

    The new attacks are sudden, intense, drastic--as in falling down, and the scariest thing is there is no warning at all. Doc is recommending a labyrinthectomy, but I'm afraid of the surgery, and the after-effects. I have lost about 75-80% of the hearing in my affected ear. Anyone my age with similar symptoms have any thoughts? Thanks.

    ReplyDelete
  90. Bonnie, I'm 53, had similar hearing loss, and had drop attacks for more than a year before I had the surgery. I was terrified of it, put it off for months after the doctor first suggested it. But I'm glad I did it. I have had one attack since the surgery, during the period while my inner ear was still inflamed and pressing on what was left of the vestibular nerve. And I'm still having residual dizziness six months later. But I do think I'm in better shape now than I was before the surgery. I don't sleep with a bowl next to the bed any more, I don't worry when I'm socializing that I might have an attack... at the very least, it has given me a much-needed reprieve. I don't know what will happen down the road, but for now, it was the right decision.

    ReplyDelete
  91. I'm not sure where to put this, but I wanted to ask if other people have had problems with stairs in a multi-level house? I'm considering a move to a smaller, less expensive house (yes, MD and the resulting unemployment mean we need to downsize) and am trying to figure out whether we should only look at ranch homes.

    Our current house is a three-story structure, but the stairs are very regular and well built and have never given me trouble. Today, however, we looked at several homes that are older and have uneven floors and tight, twisting staircases. They made me feel as if I was seasick.

    Has anyone else experienced this? Should we be trying to achieve one-floor living?

    ReplyDelete
  92. Hi Peggy,
    I'll put it in an upcoming post
    thanks
    David

    ReplyDelete
  93. Funny you should mention stairs; our bedroom is upstairs & I still feel uneasy - even after all the positive results I have had...especially not being able to see my feet while carrying stuff. My vote is for a ranch style home...ours is for sale for this very reason actually~
    Gail in California

    ReplyDelete
  94. Gail, YES! I have to ask my husband to carry the laundry baskets down to the basement for me, because I feel so insecure, especially going downstairs. Up is not as bad.

    We looked at one small ranch house that is lovely, needs no work, and has laundry facilities on the main floor. I think we are going to have to try for it. It's also much less money than we are currently paying, so it would kill two birds with one stone.

    Thanks for that validation, Gail.

    ReplyDelete
  95. Peggy, you are most welcome:-)..A note to everyone: I actually thought that now that I am "cured" of Meniere's that I could resume a completely "normal" life...which is not entirely true: I still need good rest, less stimulants [salt/caffeine] and very little alcohol intake. Reason? When I have indulged in any [& specifically all 3] I wake to mild spinning & unsteadiness. Plus, the recovery to "normal" again is longer than I can handle. We were vacationing the month of May in Europe [which is quite a time difference from California] and I am still not back to "normal" from that time change. Of course, we ate, drank & were way too merry! I also wonder that now that the California summer has arrived if that isn't a part of it too? Anyone else having a hard time in the morning? by afternoon, I finally get some energy, thank goodness!
    Gail in California

    ReplyDelete
  96. Has anyone on this blog ever experienced a CSF leak? That's cerebro-spinal fluid, and a leak is one of the possible side effects of the labyrinthectomy.

    I don't have a CSF leak, but I know someone who does, and he and his wife are looking for more information about it. If anyone has thoughts on the subject, I'd love to hear them.

    Thanks!

    ReplyDelete
  97. Hi Peggy,
    I will add that on to an upcoming post
    David

    ReplyDelete
  98. wow, thanks for all your help and info. I am looking at having a 2nd gentimiacin injection or laby per my doc - we will talk about it at next appt I had not had much success from first inj and an still having vertigo attacks at least every other day. Does a second one really make any difference? I am scared about the permanence of the surgery and afraid of having it in the other ear. I am 62 though maybe 63 when and if I have the surgery. Hate more than anything not being able to drive.

    ReplyDelete
  99. Grammaof2, everyone is different in how they react to the injections. For some, one injection is enough. For me, there was no noticeable difference until I had SEVEN. Even then, I have to have an eighth and maybe even a ninth before the vestibular nerve stopped responding to stimulation. The weird thing is, my vestibular nerve regrew. My doctor said it's very rare, but she has seen it happen once before. But that's why I ended up having the surgery.

    It makes me angry that my body was so determined to heal itself that it regrew the nerve that was causing all the trouble -- yet it could not heal the Meniere's Disease. Oh, the irony.

    ReplyDelete
  100. David, are you okay? Nothing has posted since August and we have written.
    Gail in California

    ReplyDelete
  101. Hi Gail,
    everything is okay, nothing has changed on this end
    DAvid

    ReplyDelete
  102. After 14 years of suffering with the Meniere's saga that you all know so well, my wife underwent labyrinthectomy in November 2009. It took her about 6 months to "recover". Activity and exercises are definately what it takes to train the functioning vestibular system to compensate. Vestibular Rehab was the key for her. After recovering, she had the most blessed and wonderful year with no vertigo and full return to a free life. About 4 months ago she developed very brief, 1-2 second episodes of vertigo and a full return of the "unsteady" and fatigue feelings. We know it is not positional vertigo and it's not Meniere's in her good ear, but we are stumped trying to figure out what is going on. The doctor first thought perhaps she had Vestibular Neuritis, but that should have resolved by now. Now his is thinking she may be among the <1% of people that develop a vestibular neuroma on the nerve stump following labyrinthectomy, but that is very rare and there is no way to test for it. I know we will get her through this and will be back to feeling great again someday, but it's been hard for her to deal with after knowing what it's like to feel good again. Does anyone out there know of someone with a similar experience?

    ReplyDelete
  103. Hi,
    I think that I have heard or read about vestibular neuroma before but I am not quite sure.
    I will ask about it on a future post. Thanks for commenting and stay in touch
    David

    ReplyDelete
  104. I had my first menieres attack at 19 .. quite severe and very scary..these would come and go for a while but helped with stemetil tablets ..at the age of 26 the attacks had become more frequent and my ENT consultant suggested an op to "decompress a sac" in my inner ear..this helped and for many years I just had the spinning sensation when I turned over in bed ..I was still taking stemetil to help with feelings of off balance and motion sickness but the severe attacks were controlled until I was 46 and under stress they came back in full force and drop attacks I was having several hours at a time of vertigo and vomiting and my hearing had virtually gone in that ear .. I opted for the labrinthectomy ..I had this in 1999 and am so pleased that I did ..
    When I came round from the op I felt a bit dizzy and nauseous but was up the next morning with help to get to the bathroom ..after that I would practise walking up and down the ward a bit unsteadily at first ..I was OK as long as I focused straight ahead and didnt try to look from side to side that would throw me off balance ..my daughter would visit and we would escape from the ward and go walk about in the hospital .. I had stitches from top to bottom around the back of my ear and was a bit worried about having these out but it was fine..I was in hospital for 4 days.
    When I got home each day I would take a little walk each day to the local shop and gradually take it a bit further.. I did not use a walking stick as I was told that I might need to and can honestly say its the best thing I could have done after all those years from 19 to 43 I was free of attacks ..my balance isnt perfect if I look around quick when Im walking along I sometimes have to take a little side step to get my balance but this is nothing compared to the vertigo and drop attacks..
    The brain is amazing and compensates from having balance just on one side by the feel of where your feet are on firm ground and what you can see.. If I walk on uneven ground or in an old house with uneven floors I can feel it in my balance as slightly off ..but as I said this is easy to live with compared with the full blown attacks I was having ..I have had tinnitus since my very first attack but I am lucky(so far) in being able to live with it..I know for some it is a total distraction but I try not to think about it or have music playing..
    I had the labrinthectomy 12 years ago and it honestly gave me my life back ..Mel

    ReplyDelete
  105. Ralph - Aged 68
    First I wish to thank all who have made this site possible and to those of you who have contributed to this site as it has provided me with much information and the comfort to know there are others who relate to my plight as I relate to theirs.
    My first attack of Meniere's was on February 19, 2011. I awoke in the morning feeling overheated and kicked off the covers when I experienced a wave of nausea. I went to get out of bed and realized the room was spinning and I had no balance. I rolled out of bed and crawled to the bathroom, with much effort, and pinched my head between the wall and the toilet, thew up several times, could not get my balance and called the ambulance. (Try throwing up in a toilet without the balance necessary to hold one self erect, but then again many of you have.) My wife called the ambulance as we thought I was having a stroke. I was misdiagnosed in the hospital and upon my release continued to have these violent spinning drop attacks accompanied with nausea.
    After researching my symptoms on the computer I found Meniere's. My family Dr. also diagnosed me having Meniere's and referred me to a ENT doctor. After three injections of gentamicin in my left ear and months of different drug therapy with no improvement I transferred to Johns Hopkins where I underwent a left middle ear exploration and Lysis of adheasions and chemical Labyrinthotomy with Gentamicin. The attacks were less frequent - but continued without the nausea. After a second injection of gent the attacks continued. I have been undergoing Vestibular Physical Therapy three times a week and the severe attacks have started up again after a seven week reprieve.
    My physician feels the next step is a Labyrinthectomy. I like many of you, do not want to rush into this irreversible surgery.
    My walk is that of a severely intoxicated person or, as someone said, a zombie walk. I have no hearing in my left ear, some minor eye sight difficulty and a somewhat foggy brain. My next appointment at Johns Hopkins is on April 11 but in the mean time I will be contacting a Neurologist to be certain there are no other factors complicating my Meniere's.
    One question to the readers of this blog. I wonder how long you drop episodes lasted. Mine have been typically 2 to 3 1/2 hours with the longest lasting 14 hours.

    ReplyDelete
    Replies
    1. Ralph - you have been traveling a very difficult road that is very familiar to me. My longest attacks would go on for hours, but I don't think I ever timed it. I do remember losing entire afternoons and evenings, not being able to get up off the floor, vomiting into a bucket because I couldn't get to the toilet... you know the drill. I also went through the gentamicin therapy and vestibular rehab therapy, and I got some relief but not enough to stop the attacks. So, since my hearing was gone in that ear, I went for the labyrinthectomy.

      It took me months to adjust to the idea of having the surgery. I found the idea frightening and kind of horrifying. My ENT was patient with me, trying more gentamicin, vallium, and prednisone. Finally, I accepted it and scheduled the surgery. I'm glad I did... although I feel now that my balance will never go back to "normal," at least it has been more than a year since my last attack, and I'm beginning to hope that they are a thing of the past.

      Now I just have to find ways to adjust to my new realities and learn how to lead a full life around my limitations. I'm finding it difficult to find my mental and emotional balance... I almost feel like I am "hung over" from all those attacks and don't know how to go back to simply living. I don't quite know who I am now or what I can or cannot do. It's hard to believe that another attack isn't lurking around the corner.

      Delete
  106. hello ralph
    your having standard menieres attacks which last for hours. a drop attack is tottally different, u black out for up to a minute, everything around u is spinning and u have no control, it verges on epilipsy/black out. you have no control whatsoever.
    seems you are very new to menieres make sure u go down all the medicine and lifestyle changes (diet, sinus control, allergies etc) before you take the laby option.
    it can subside for alot of people, in the first 2 years. and going to see a neuroligist is a very good idea.
    good luck
    ali

    ReplyDelete
  107. Ralph - reply
    Hello Peggy and Ali:
    Thank you for your responses. Every bit helps! I could not adjust to the diet as it was too restrictive. No eggs, no peas, beans or lima beans, reduced salt that I could manage, no citrus fruit, no prepared meats, none of the good cheese, and on and on it went.

    Has anyone observed a difference with dieting?

    It is now a year and two months for me since the onset of Meniere's.

    I was very active prior to this and it is extremely difficult for me to be a sofa potato.

    ReplyDelete
    Replies
    1. Honestly, I haven't noticed a difference from dietary restrictions, but I'm like you... I don't have the patience to go all the way with cutting out the "bad" items from my diet.

      I agree with you about the difficulty of becoming a couch potato. I've gained about 15 pounds since I started battling Meniere's in a serious way, and I'm really fed up with the whole thing.

      Delete
  108. Hello Ralph
    My interpretation of menieres (with respect to nine years of suffering from it) is that largely it would seem that we have an underlying problem with our inner ears. But sadly there is no direct way in which the Doctors can cure this problem (balance being the biggest issue).
    At the end of the day disease can be interpreted as dis-ease. Meaning your body is not at ease. What we all have to search for is a way to find peace within our body. You have to help yourself with menieres and not put everything in the doctors hands or forever you will be struggling. The day to day little niggles that are part of menieres (dizziness, tinnitus, aural fullness), are somewhat in our own hands also, we have to look after our diet, control our migraine and sinus, to ease the symptoms. If we don’t take steps ourselves and leave everything in the hands of the doctors its easy to end up on myriad of tablets and eventually invasive surgery.
    Regards
    ali
    ps you made a list of foods not to have could you post a link to where you found this

    ReplyDelete
    Replies
    1. Hello ali:
      The diet was prescribed by my doctor.

      Delete
  109. hello ralph
    any chance you can write the list for me
    regards
    ali

    ReplyDelete
  110. Suffered menieres for the last couple of years. Started only with fullness and intermittent reductions in hearing, all in my left ear. About 10 months ago had my first severe episode of vertigo and hours of vomiting. Since, have had one serious drop attack with again, hours of vomiting and dizziness. Had another attack a week ago. Much tinnitus in left ear and not much hearing left. After trying more conservative treatments, have opted for labyrinthectomy surgery the first week of June. Will be 64 but in otherwise great health. Anyone tell me if I'm doing the right thing?

    ReplyDelete
  111. Hello anon
    Your jumping to one of the highest ops possible, a lot of people say you should try grommet with steroid injections / then sac decompression / then gent injections. Before you jump to the heavyweights.
    The one you are having from what I have heard is for people with virtually no hearing left in the effected ear, as it will make you deaf/very hard of hearing.
    But saying all of that I presume your doctor may think that the one you are having is most apt for you, but from my experience its always good to question your doctors regarding ones own health.
    Regards
    Ali

    ReplyDelete
  112. Considering getting labyrinthectomy. Would love to hear from others who've had the surgery.

    ReplyDelete
    Replies
    1. I had the labyrinthectomy about 1.5 years ago.

      My ENT had tried everything she could think of, from diuretics to steroids to gentamicin shots. We did NOT try any of the other surgeries that some people on this message board have tried, such as sac decompression or shunts. She recommended the labyrinthectomy because my attacks were relentless, none of the treatments were helping, and I had very little hearing left in the affected ear.

      I had an unusual experience with the gentamicin shots... my vestibular nerve seemed to be destroyed at one point, but then grew back while I was still getting vestibular rehabilitation therapy. So my balance went from terrible to better to terrible again, and I was having vertigo every day.

      I had the surgery in the morning and woke up with a pressure bandage over my left ear, which was removed that evening, once the bleeding had stopped completely. I stayed overnight to make sure I had no complications, and they had me up and shuffling to the bathroom just a few hours after the surgery. They expected me to be extremely dizzy, but I wasn't, because my other vestibular nerve had already begun adapting while I had the gentamicin treatments. So I was somewhat dizzy, but not falling down. Not much pain, not much nausea.

      The next morning, they had my husband take me to the shower, where I bathed sitting on a plastic stool. They wanted to make sure I could do at least that much to take care of myself safely. We got around the hospital with my husband leading the way, and my hands on his shoulders from behind, shuffling along like a train.

      After I went home, I was dizzy and very off-balance for about a week, if I remember right. I had to be extremely cautious on the stairs and moving around the house, but I took it slow and used walls and furniture to keep myself stable. It was a few weeks before I felt more normal, and I was very nervous about the wound behind my ear. I never did look at it in the mirror. It took weeks for my ear to feel like it belonged to my head again... I think the nerves had to re-establish the connections.

      I have had one vertigo attack since the surgery, about a month after I came home. Since then, I've had moderate imbalance, and I don't think that's ever going away. I get exhausted very easily from having to compensate for the balance issues. I have chronic dizziness from nystagmus that never quite goes away, and getting around can be a real challenge. I still don't drive much -- only very locally. I'm not sure I'll ever drive on a highway again. And the dizziness is better or worse, changing from day to day.

      I hope this helps... let me know if you have any questions.

      Delete
  113. hello peggy
    sorry to ask you this, whats your age and how long have you had menieres.
    also, have u ever thought about laser surgery for your eyes
    regards
    ali

    ReplyDelete
    Replies
    1. Hi, Ali. I'm about to turn 54 and have had Meniere's since 2000. I didn't realize it for a long time, but now I am certain that's when the symptoms began.

      I've never considered laser surgery for my eyes because my vision was never really bad. I only started wearing glasses for distance vision very recently, and it was mostly because of the nystagmus... laser surgery won't affect that, as far as I know.

      Delete
  114. Hello ... I have had Meniere's for several years and have tried various treatments including steroid injections and dietary changes, medications and so on. My attacks come every 2 to 3 days and range from medium to strong -- including nystagmus, tinnitus, pressure in the ear, extreme vertigo, nauseau and vomiting -- and can be anywhere from 30 minutes long to 9 hrs long. I then end up exhausted and beaten up and sleep for 12 to 15 hrs.

    After living this life for several years, and trying various remedies -- my specialist is now recommending a labyrinthectomy and I am set with a date of June 15th for the surgery.

    I have a couple of questions that I would love input on from anyone out there who has had the labyrinthectomy:

    * If you had tinnitus before, did the laby make it better / worse / no change?
    * If you had nystagmus before -- did the laby make any change in that symptom ?
    * How long did it take you to recover?
    * Did the doctors recommend taking your licence away for any period of time as a result of the surgery?
    * Did your doctor test you just prior to surgery to ensure that there was no sign of Meniere's in your other ear before proceeding?
    * What was your overall recovery period before you were able to return to work?
    * Were you working prior to the surgery?
    * How did you feel that the 'balance' issues that I see some people speaking of that continue after the surgery -- how did they differ from the vertigo attacks? Just feeling wobbly on your feet? Please explain...
    * And how did the effect of becoming permanently deaf in one ear affect you after the surgery?

    I am nervous heading in to this surgery and would appreciate any feedback or insight...

    Many thanks!!!

    ReplyDelete
  115. I had the laby in September 2010. The following is my experience applied to your questions:

    * If you had tinnitus before, did the laby make it better / worse / no change?
    Just as bad as before so no change

    * If you had nystagmus before -- did the laby make any change in that symptom ?

    I did not have nystagmus before the surgery but did afterword. It got so badd I had to undergo Vestibular Rehab. I would highly recommend starting the rehab before the surgery to get a baseline and then continue immediately after the surgery. I was told that I needed to wait a year and that really was a set back.

    * How long did it take you to recover?

    I am still recovering. The biggest issue was the nystagmus. I really believe if that VRT is started right after surgery, I would have been functioning much quicker.

    * Did the doctors recommend taking your licence away for any period of time as a result of the surgery?

    No, but I would not drive until I was confident that sudden movements did not cause issues. Due to nystagmus, I would have a bobblehead effect and could not focus.

    * Did your doctor test you just prior to surgery to ensure that there was no sign of Meniere's in your other ear before proceeding?

    Yes - before and after surgery

    * What was your overall recovery period before you were able to return to work?

    I started working about 3 months after the surgery and took about 8 weeks to get to full time. I worked from home until 22 months after surgery and still do 3 days a week.


    * Were you working prior to the surgery?

    Yes when I could between attacks. I am sure you are aware of the long lasting impact of each attack.

    * How did you feel that the 'balance' issues that I see some people speaking of that continue after the surgery -- how did they differ from the vertigo attacks? Just feeling wobbly on your feet? Please explain...

    My mechanics came back quickly. i was walking within 2 days with a walker and after a week, on my own. The nystagmus was the cause of my "balance" issues. It does not feel like an attack. Things just appear to move. I could not read for more than 10 minutes without feeling nauseated. After tests, they stated my eyes were moving 40 beats per second. The therapist did not know how I was doing what I was. With all this, it was still better than the attacks. At this point, I feel normal 95% of the time. I notice quick head movements give me a strange sensation of something "missing". However, this is less frequent than even a month ago.

    * And how did the effect of becoming permanently deaf in one ear affect you after the surgery?

    I had about 10% word recognition in my affected ear so I did not notice much. For me the change is mostly in determining where sounds come from.

    Having the surgery was a no brainer for me. Having the attacks and not knowing when or where it would occur was not acceptable. Even with my issues as a result of the surgery, I would not hesitate to have it again. I would start VRT as soon as I could and not let the doctor say otherwise.

    I hope this helps.
    Mike

    ReplyDelete
  116. I don't have anything substantially different to report compared with what Mike said... my experience was quite similar to his.

    For me, however, there was a quicker recovery after surgery because I had gone through a course of gentamicin injections before deciding on surgery. So I was already learning to adapt to the loss of that vestibular nerve before they cut it.

    I was up and walking a few hours after the surgery, and went home the next day. I was able to get around on my own, very carefully. But you do need to be careful not to rub the incision area when you wash your hair for a week or so, I believe. And it took a month or two for that ear to feel like it belonged to my head again. Don't expect to drive for at least a few weeks, and be careful when you do go back to driving. Quick head turns are not good -- everything would swim around.

    I was not working when I had the surgery, but I started a new job only two weeks after the operation. It was a disaster. I really wasn't ready, and the job had very high expectations. I ended up being fired after three months. That was a first for me, since I was used to being a top performer in most of my jobs. Very depressing.

    Give yourself time to recover. If you can return to work part-time, as Mike did, do that. It will be very helpful. Be gentle with yourself and don't set your expectations too high too soon.

    I also had bad nystagmus after the surgery and still have some now (I had the laby in October 2010). Before the surgery, I only had nystagmus during attacks. After the surgery, it became a constant, although there is less of it now.

    Otherwise, I agree with everything Mike said. And I would certainly have the surgery all over again. Living with the attacks I was having before the laby was no kind of life at all. I have a lot of my life back now, even though I'm on social security disability now.

    ReplyDelete
  117. Hi. My name is Charlie. I have had two injections in the last year and been through rehab, with little to any improvement. I am now scheduled for the Labyrintecetomy on the 24th of this month. I have not been given the list of do's and do not's yet, so not sure what to expect, but hopefully this will give me some relief and help. I have learned a lot just reading on here on what people have gone through.

    ReplyDelete
  118. Hi Charlie,
    Good luck on the laby surgery, I know that there some folks that have found relief with it. I hope you are one of them.
    stay in touch
    thanks
    David

    ReplyDelete
  119. Thanks David. I am ready for most anything to help get me back to some kind of better quality of life. I guess I am more scared of the unknown and what things might be like after the surgery. I can only hope things improve

    ReplyDelete
  120. Charlie, if you have any questions about the laby, I'll be happy to respond. I had it a year-and-a-half ago, and I consider myself a success story. I have only had one full-blown attack since the surgery, and the recovery has been rather lengthy, but I have no regrets at all.

    One thing I would do differently if I could is I would start physical therapy as soon as possible after the surgery, to encourage the "good" ear to start compensating as soon as possible. I think I waited too long, because my ENT didn't suggest it. But now I believe that the exercise I'm doing more recently is helping me feel better, and the fact that my body is getting stronger is helping me stay steady even if I do get a "woozy" moment.

    All things considered, I am light years beyond where I was a couple of years ago. I still have frequent dizziness and am easily exhausted, but when you compare it to the hell of having multiple attacks per day... it's a real no-brainer.

    Good luck!

    ReplyDelete
    Replies
    1. Thanks Peggy. I have read most of all your post and learned a lot. The problem that I am having accepting this is I am an outdoors man. I love to hunt, fish, camp, archery, and on and on. The last couple of years, I have had severe problem in the woods and beginning to in driving. I have read that a lot of people still have problems outdoors? How did it affect your outdoor life and or driving?

      Thanks
      Charlie

      Delete
  121. Driving is still a bit of a problem for me. I'm afraid of what might happen if I were to drive any distance on a highway at high speed. I also have had migraines with visual auras this year, which adds to the potential problems for me when I think about driving.

    Being outdoors can be a bit unsettling still. If I am walking on unsteady ground, I need to be careful, and being in the woods could be uncomfortable. I used to like camping, although I never tried hunting or fishing. I grew up sailing and swimming, and miss those. I think it should be possible to go back to those things after awhile, if you work on getting your good ear to compensate for the balance you will lose on the other side.

    When I had my laby, my doctor promised that I would be able to go back to life on and near the water, but I haven't tried it yet. The full recuperation has been a lot longer coming than I expected, but I'm making slow progress. I'd like to think that it won't be too much longer, but I'm still taking one day at a time.

    I know it's frightening to think about how much your life will change, but it's already changed. I believe Meniere's took far more from me before the surgery than the things I am missing now.

    ReplyDelete
  122. Thanks again Peggy. This is going to take it toll on me I am sure, but hopefully it will give me some relief. I have tried to get answers from the surgery scheduling poeple, and not having much luck. No on has told how long the operation will take, about how long the stay in the hospital will be so I can make plans for the people I need to help me through this. Kind of discouraging to say the least. I was told I would get a call the night before surgery telling me what time to be there. That sure does not give on much time to make plans, but I guess it is what it is. Just have to bear with it I guess.

    ReplyDelete
  123. Mine took a few hours; I seem to recall two or three hours was the target duration, but she did things a little differently for me to spare some of the hearing apparatus in case it can be used in the future to make that ear hear again (using some research in the works now).

    Believe it or not, in the hospital where mine was done, it's common for people to go home the same day! My doctor made sure they admitted me and planned to keep me overnight for observation. I was encouraged to get up just a few hours after I was taken to my room to shuffle to the bathroom on my own, using one of those tree things they hang IV bags on as a prop. The next day, they had my husband help me get to the shower and wash to make sure I could handle things on my own, and then I went home!

    It was much shorter than I anticipated, in every way.

    When I woke up, I had a pressure bandage around my head to make sure the bleeding from the ear stopped asap. That was removed later that day by my surgeon. There were five staples behind the ear to hold the incision closed, and I was told not to rub it while shampooing and to make sure I didn't get hit in the head for awhile. The staples were removed in a week or nine days, if I remember right.

    One weird thing: It took some time for the nerves to the ear to get their bearings again, and so my left ear didn't quite feel like it belonged to my head for several weeks. But now it feels exactly like the right ear, in terms of physical sensation.

    The hospital wasn't at all good at telling me things. My doctor was the one I asked all my questions. Fortunately, my ENT is also a neurosurgeon, so she had all the details I needed. Could you ask your doctor for all the info you are wondering about? I'd try that.

    ReplyDelete
  124. I should add that although my husband and I were careful for the first day that I was home, and he went with me when I needed to go up or down stairs and so on. But within a day I was able to do everything for myself around the house, at least in terms of getting to the bathroom, washing, getting a small meal together, and so on. But I had been unemployed for awhile, so I didn't need to think about getting back to work.

    However, I did start a new job about two weeks after the surgery. And although I don't want you to think my case is necessarily typical, the job was a disaster, and I was fired after three months. I couldn't think clearly enough to get the hang of it, and I would be exhausted after just a few hours. So be prepared to slow down from your normal pace for awhile. Your body will need time to adapt, and all the extra work of compensating for your new balance situation will take a toll. Be patient... it will get better.

    ReplyDelete
  125. Thanks Peggy. I am sure the Dr. and I will be having a good long chat. From what I understand, it will be just before the surgery. I will know on the 24th....lol. Thanks for all the help you offered.

    ReplyDelete
  126. You are very welcome. And I hope your experience with the surgery is everything you want it to be, and that your recovery is complete and quick! Incidentally, I had hardly any pain even hours after the surgery. Didn't need the pain meds at all!

    ReplyDelete
  127. I am sure the stress of thinking of having the operation has contributed to my dizziness the last few days. Seem like it is hard just to stand up let alone focus on anything. I don't think next week can come too soon for me.

    Thanks and God Bless
    Charlie

    ReplyDelete
    Replies
    1. Hi Charlie,
      Best of luck and we are all pulling for your speedy recovery!!

      Margaret

      Delete
    2. Surgery scheduled for 1:00 PM this afternoon. Sure hope things gets better after this

      Delete
  128. Good luck I hope everything goes well
    David

    ReplyDelete
  129. Charlie, good luck! I'll be thinking about you today. Post again when you are able. I'm sure it will all go well, and I wish you a speedy, uneventful recovery. Everyone recovers at a different pace, so don't worry if your experience isn't exactly like mine. And make sure your ENT prescribes vestibular rehab therapy when you have recovered enough from the surgery. It will help you get your feet solidly under you again.

    Good luck!!!!

    ReplyDelete
    Replies
    1. Well I am home at least. Had to stay one night, just way to sick. I guess you could say that today is the second day of the rest of my life....lol

      Thanks again everyone and God Bless
      Charlie

      Delete
  130. Hi Charlie,
    I'm glad your home and hopefully you'll have a fast recovery
    David

    ReplyDelete
  131. Charlie, did they send you home with prescriptions for nausea and pain? I was so lucky not to have any nausea at all, but I think it was because I had already had gentamicin shots and because they gave me a really good anti-nausea medication patch before the surgery. But I also had almost no pain that I couldn't easily handle with ibuprofen, which was amazing.

    How are you feeling today? Are you able to get along on your own?

    I'm glad you're done with the surgery and home. And as you say... now the rest of your life starts. Wishes for a quick and painless recovery.

    ReplyDelete
  132. Yes they gave me medicine for nausea, antibotics, and pain. I am able to baby step around with a walking stick, very very dizzy and still getting sick to my stomach. Not able to eat a lot, but drinking plenty of fluids. Really really bad today. Super head ache and just drained feeling.

    I will keep everyone posted
    Thanks

    ReplyDelete
  133. I am SO sorry, Charlie. It will get better, I promise. And once you get into vestibular rehab (I hope you are going to do this?) you will find you make progress with every session.

    I'm trying to remember just how bad it was when I was taking the gentamicin shots and they finally kicked in -- I remember going to see my ENT after the last shot, having to feel my way along the walls, and hearing her say "Holy shit" when she saw me. But the worst of the nausea passed after a day or two.

    Hang in there.

    ReplyDelete
    Replies
    1. Thanks Peggy. I hope it let's up soon. And I hope it worked....lol. We will see. Thanks so much for your thoughts and cares.

      Charlie

      Delete
  134. Charlie, hoping you improve every day. Also wondering your age and who your surgeon was. Good luck. Everyone's pulling for you.

    ReplyDelete
    Replies
    1. I am 62 and my surgeon was Dr. Daniel Coelho at the VCU hospital in Richmond, Va. Today is the best so far. I stopped taking the vertigo medicine as I feel it was not letting my right side adjust. Still a little dizzy, a lot sore, and really tired. But still the best day yet.

      Delete
  135. Oh, Charlie, that sounds very encouraging! I'm so glad to hear it.

    The one thing my ENT/surgeon didn't mention when I had the labyrinthectomy is that you need to challenge the brain and the other remaining vestibular nerve in order to make the adjustment. I think my "good" vestibular nerve might have compensated more quickly if I had started physical therapy sooner and pushed a little bit. I was too afraid, however.

    Talk to your doctor when you go for a follow-up exam about how soon you should start doing some rehab exercises. I really think it will help.

    I hope you feel even better tomorrow, and the next day, and the one after that! :-)

    ReplyDelete
    Replies
    1. Thanks Peggy. I have an apt. Monday for a follow up and will ask. I just made my first trip out of the house. Went down 8 steps, walked out to my truck and started it, and walked back and up the 8 steps. Boy is the balance really different than walking on floors in the house. But it felt good and my head did not give me the dizzies that it use to when walking outside. Hopefully a really good thing.

      Delete
  136. Go to the doctor today at 1:30 for my first post op visit. All in all, things are really good. I have not had to use the walking stick for two days now, but being very slow and careful. Walking outside does not seem to bother me as much as it did before surgery, so that should improve with time as well. Have not driven yet, wanted to wait until I seen the Dr. to get my do's and do not's in order.

    ReplyDelete
  137. Sounds like you are making progress, Charlie. I hope the doctor gave you all good marks for your post-op healing.

    I went to see my audiologist today, and I'm going to try the cross-ear hearing aid that uses wireless technology. My right ear is perfect, thank goodness, although the left one is essentially dead to the world. But I have high hopes for this new technology, and I'm still getting stronger and losing weight now that I can work out again, and all that makes me feel much better.

    I hope you keep going from strength to strength, Charlie.

    ReplyDelete
  138. I wish you well and great luck with your new hearing aid Peggy. Drove down and got a cup of coffee this morning. It is the first time my eyes have not jumped all over the road in 3 years. Not using the walking stick any more, and been out walking around the yard with little to any problems. He told me yesterday that this was the silver lining of the clouds, and not get a lot of hopes up as I will definately have bad days, depending on what triggers the spells. But I am very pleased with having this done so far, and hope it continues to get better.

    ReplyDelete
  139. Go easy, and don't be surprised if you have ups and downs in your progress. Slow and steady is the secret for awhile, but stay active to the extent that you are able to stay balanced and keep your energy levels up.

    I found I got exhausted very easily for a very long time after my surgery. Your body and your brain and your other vestibular nerve will be working very hard to compensate and keep you on an even keel, so give yourself breaks if you feel like you aren't moving along as fast as you would like.

    So far, so good! :-)

    ReplyDelete
    Replies
    1. Well week two has come and gone. Able to do a few things outside. But like others have stated, I get totatly exhausted very quick. My walking outdoors is still somewhat of a challenge, but for the most part, an improvement. Still have one piece of a stitch that does not want to dissolve and will not pull out. Maybe in time.

      Delete
  140. Sounds like you are making good progress, Charlie. (That is you, right?) I still have issues walking around outside, and the exhaustion still happens. I think it's because my body is working overtime to compensate for the lack of a vestibular nerve on one side. Not sure if that will ever go away, but it's still much better than daily attacks.

    I hope you keep getting better. If that stitch doesn't go away on its own, just have your doctor remove it. I had metal staples when my surgery was done, and the doctor took them out after a week or two.

    ReplyDelete
  141. hey folks interesting to read your experiences. i came out of hospital today having just had a labrythectomy and having waited and suffered for 25 years before anyone would take note and help me. frustration as you can imagine. for me the greatest issue in addition to all of the others was hyperacusis, and in fact it is not yet clear to what extent i will be helped. but hey, for me menieres is one of 21 prescribed conditions which puts me in a wheelchair etc so, well, let's just see what happens. most of all folks, keep on smiling, that is what really helps.

    ReplyDelete
  142. I am 44 and my first episode was in 2005 and I had problems with balance until last May when I was running about 4.5 miles in my run and I suddenly felt a jolt like I was about to pass out. I stopped and started to walk and felt someone was wrong. I had a trouble with breathing normally. I went to a ENT three times and got a hearing text done and he said I have about 40 percent hearing and I might have caught a virus. He really didnt help me. So, I got a second opionion and he said I probably have Meniere's. He didnt help either. I found a coworker had similar symptoms so she referred me to her doctor who speacializes in Menieres. I didnt know there was such a doctor. I was getting the attackes for a few days in a row last May after my run and hearing test. I didnt know what to do. I am glad I ran into my coworker. I have been seeing this new doctor and he has been having me on Dizapam and a compound drop that you drop under your tongue. I do have the sound in my left ear that sounds like I water fall but not ringing. I have had one major drop and a few hear and there. It probably is because from my salt and Dr. Pepper intake. I am runner and training for a marathon. I saw my doctor last week and he suggested surgery to remove the inner ear. I am new to all of this. I have not had any treatment other than medicine. I dont get the full blow verigo attacks. I just get the drops for a few seconds. I guess it helps that I run frequently. I go get tired. Is the removal of the inner ear the same thing as Labyrinthectomy?

    ReplyDelete
  143. yes it is i find it hard to imagine that someone would make sucha suggestion in your situation. not doubting what you have said but maybe the compentence of some practitioners!

    ReplyDelete
  144. Good luck to both of you. I still have some really bad days after having the operation one month ago tomorrow. Mostly with exhaustion and some really bad dizzy spells if I try to do too much. It is getting better, and down the road does look promising, but for now, it is just letting my right side take over and get used to everything.

    Best of luck to you both.

    ReplyDelete
  145. Robert, I'm also surprised that a doctor would suggest this surgery so early in your history with Meniere's. I would seek a second opinion. Particularly since you are used to running and are still able to do that, I would hold off until you have tried some other treatments.

    Note that after the labyrinthectomy, it could be awhile before you are able to go back to running. Different people have different recovery times and progressions, but I don't think it's fast or easy for anyone. That said, the fact that you do marathons now is definitely in your favor. I have heard that exercise helps people a lot with MD.

    My advice would be to find another doctor who specializes in MD to consult about this. It's great that you found someone who was able to give you a diagnosis, but his advice to go straight to surgery seems a bit premature to me.

    ReplyDelete
  146. I agree with Peggy. From my first onset with MD, my surgery came 3 years later after concluding that this was the problem. I would also seek another's opinion

    ReplyDelete
  147. My surgery took place about a year after I began having extreme symptoms that would totally incapacitate me every single day. I essentially lived on a sofa with a bowl beside me, just in case. I couldn't function, plain and simple. Even so, my doctor followed a conservative protocol, trying various treatment options that escalated over time.

    We avoided doing anything destructive until it became clear that the Meniere's wasn't going to respond to anything less harsh. So we saved the gentamicin shots and the labyrinthectomy for last. I don't regret the surgery at all... but it was only done once it was blatantly obvious that nothing else would work.

    ReplyDelete
  148. Just an update from the last month. I have read so much about others being so tired. Well these last two or three weeks have just been a totatly drain feeling. It is like I have no legs and zero energy. Not sure what is going on, but this sure is not fun by any means.

    ReplyDelete
  149. Unfortunately, the thing you will really need going forward is patience. It takes time for the body to adjust and to get your stamina back. Do what you can, but try not to beat yourself up for the things you can't do... yet. It will come.

    ReplyDelete
  150. How long did you go Peggy, before you endurance and stamina came back, or has it?

    ReplyDelete
  151. My surgery was nearly two years ago, and I got my endurance and stamina back very gradually. It wasn't entirely consistent, though. Some days were better than others, and that is still true.

    I know I'm stronger now than I was a few months ago, because I've been working out. But last year I wasn't strong enough to work out to a meaningful extent. And I find that if I participate in strenuous activities, I get tired faster than I used to, and it takes me longer to bounce back.

    I'll be the first to admit I'm a bit of a wimp, and I have not pushed myself as hard as a lot of other people might push themselves. I have a close friend who is a marathon athlete, and he would never tolerate the kind of laid-back approach to recovery I've taken. I do wonder how quickly someone like him would regain full function and strength.

    My point being that you might get out of it what you put into it. I am not trying to be hard on myself... but I realize that I probably could have put more work into my recovery and made it faster -- but it's hard to be sure. I was afraid to take risks for a long time; now, I'm making progress, but I can still feel that things take more effort than they used to, and I take longer to recover than I did before I got sick. One step at a time.

    ReplyDelete
  152. Thanks Peggy. I wish you all the best to get to a full recovery state. As with all surgeries, no on is ever told all of the possibilities that come with or from that surgery. I myself, am an advid outdoorsman. I love to hunt, fish, canoe, and any thing pertaining to the outdoors. So far, I have not been able to go into the wood because the depth perception I assume, just tares me up

    I am doing a lot of things, forcing my self to that is, but man do I pay for it for the next few days. One day of using my brain and physical work with my body, can put me in bed for three days with a hugh dizzy sensation.

    I was on the computer yesterday for quite a while, typing and looking around, and today already I have been back in bed twice. That is how is usually works on me.

    I have been told by all the doctors, and the reading that I get off of the net, that it takes a long long time, and naturally all functions will never return, but I can only hope that most of them do and allows me to move on.

    Thanks so much for all and everyone help through this.

    Charlie

    ReplyDelete
  153. Charlie, I remember that you are an outdoorsman from your earlier posts. I do think you will be able to return to this, but it will take time and come back to you gradually.

    Take it in small increments, and take precautions to allow for how tired it will make you. And be extra cautious in how you move, because I find that I still get sudden dizzy spells and have to work hard to avoid falling if I turn abruptly or move my head sharply one way or another. It's a work in progress.

    I know exactly what you mean about paying for the things you make yourself do. I think that's why I became rather wimpy and spent a long, long time just sitting on a sofa recuperating. Heck, I taught myself to knit and have a very large collection of pieces I've made while waiting to feel better. Over that time, though, I've returned to the things I loved before, like music performance and exercising. It just took far longer than I expected.

    The last time I saw my ENT specialist, who was the surgeon who did my labyrinthectomy, she asked me how I was, and I said, "OK." She looked at me more intently and said, "No, how ARE you???" And I repeated, "OK!" For a long time, I couldn't have said that and meant it. Now, I really AM OK, although there are still things I'm not ready to do.

    You'll get there. Just give yourself a lot of breaks and patience along the way. It's a hard road, but it can be traveled successfully, I believe.

    ReplyDelete
  154. Almost the end of the month. No matter what I do, I stay completely exhausted. Even the smallest things. I am really struggeling with this. I sure hope it let's up soon. The dizziness is much better, but still get those spells now and then that last for a while, but nothing like they were.

    ReplyDelete
  155. Don't lose hope. Your body has been through what amounts to an assault, and it takes time to get going again. You're in an adjustment phase, and it may not be short. But you will start to feel better, and should improve incrementally, if my experience was typical.

    ReplyDelete
  156. Anonymous--haven't heard from you since September. How are you doing two months down the road from your surgery? Still pleased you had it? Is your balance improving? How about the vertigo? Gone? I ask these questions because I'm 64 and considering having the surgery myself.

    ReplyDelete
  157. In some areas there has been some improvement. The sever vertigo is all but gone. I still get dizzy spells with quick movement of the head or like when I bend over and then stand up real quick. The biggest part that has not improved is my depth perception while in the woods. The leaves falling, trees swaying causes me to get really sick quick. I am finally getting a little, very little of my endurance back, but still have days that I am totally drained.

    One area that has not improved at all is my driving at night. The lights just cause all sorts of problems, and I am now getting sever ringing in my left ear, the one they did surgery on.

    I am no where near where I want to be, but am farther along than I was before the surgery. I think it is just going to take lot's of time and just have to wait to see if other areas improve.

    Would I have it done again, as of right now yes.
    As long as I continue to see improvements. If I don't get the improvements that was said I would have, with time, then no I would not do it again.

    ReplyDelete
  158. Anybody out there had the vestibular neurectomy surgery. If so, what kind of results? Positives? Negatives? Vertigo gone? In retrospect, would you do it all over again.

    ReplyDelete
    Replies
    1. I did not realize that this procedure was even offered any longer.
      Reasons: there are many risks
      Cutting the facial nerve.
      Not cutting all the vestibular nerve pathways and still have vertigo.
      Cutting the hearing nerve.
      If you go bilateral, that ear is gone.

      I was offered this several times over my 2 decades of disease and never went for it.

      Research this carefully and ask your doc how many times he/she has done this procedure, ask about outcomes etc.

      Delete
  159. Once you've had the laby, are all dietary restrictions, including salt, caffeine and booze no longer necessary?

    ReplyDelete
  160. I never thought to ask, but I assume you should continue to watch your diet, since there's always a small chance you could go bilateral. If you restrict salt, caffeine and alcohol, perhaps it would take longer for the other ear to be affected, or maybe it would help prevent it from happening? I don't know. But I'm willing to keep up the restrictions in the hope that it will do some good.

    ReplyDelete
  161. Confusing answer, Peggy. Didn't think salt, alcohol, etc. were cause of menieres. Merely things to avoid if you have the condition. Why follow those restrictions after a laby unless you were diagnosed with bi-lateral menieres?

    ReplyDelete
  162. hello
    its a very straight answer,
    scientifically you could argue that there is no need to adhere to a strict diet. as the nerve is dead and it wont be sending messages to your brain anymore.
    but as menieres is such a grey area, based on going bilateral and other factors it would kinda be advisable to stick to the diet. plus the menieres diet is actually good for other parts of your life anyway. for me irrelevant of operation i will always stick to the diet and physical therapy side of things.
    also just want to say cant tell you lot how good tai chi moves are for menieres. always moving and looking all over the place.
    regards
    ali

    ReplyDelete
  163. Salt, caffeine, and alcohol don't cause Meniere's, but they appear to exacerbate symptoms. So, if you were to develop Meniere's in the other ear, which still has an active vestibular nerve, it would make any symptoms worse. It could also make symptoms show up sooner, by increasing pressure in the inner ears.

    No one knows what causes Meniere's, but some triggers seem reasonably consistent. To me, it makes sense to minimize the triggers that might make you feel like hell if your second ear begins to develop symptoms. I don't pretend this is scientific, but it's a working theory. :-)

    ReplyDelete
  164. Anyone out there had a laby done by Dr.Samuel Levine at the U. of Minnesota. If so, what kind of results did you achieve?

    ReplyDelete
  165. Have an almost new Meniett device from Medtronic that I'm looking to sell. I bought it new less than a year ago for $3500. It's in perfect shape but I'm opting for surgery so looking to let it go. Post on this board with your email if interested. By the way, it helps and it's painless.

    ReplyDelete
  166. One week post-labyrinthectomy. Suffered from menieres and drop attacks for almost five years. Had had enough and decided to go for the gold standard. Very rough first couple of days but day by day things are improving. Vertigo appears gone (good riddance). Still have light dizziness and some imbalance but appetite recovering and balance improving by the day. I guess what I'm saying is there's hope for all of you feeling hopeless. There may actuall be a potential cure for this dreaded quality of life-altering disease. Can't say where I'll be in six weeks (when my doc says I should be about back to normal) but if he's anywhere close, it's all been worth it. Plus now eating normal food, drinking coffee and lookng forward to having a martini as well. Post any questions you may have and I'll do my best to address them. Hang in there. Don't abandon hope.

    ReplyDelete
  167. I think that one of my main concerns with having a laby done was how it would alter my balance. One doctor that I spoke with told me that it takes a while to get back to normal after this surgery.

    I'm glad that things are going well for you, stay positive
    Good luck and stay in touch
    David

    ReplyDelete
  168. Thanks, David. Balance is an issue but hoping that will subside. But measured against the hell and fear of vertigo, it's nothing. It's a tough surgery and recovery but the suffering of menieres is no walk in the park.. But if most of your hearing is gone, I think the surgery is definitely an improvement. Time will tell but right now I have no regrets. Unfortunately, there's no free lunch once you get this disease Good luck.

    ReplyDelete
  169. Five weeks post labyrinthectomy. Vertigo, thank God, appears gone. Driving is no problem. Balance is good and has been from the beginning. Also, reading is no problem. That said, I do suffer from feeling like I'm in a permanent fog. Feels almost like pressure on my head. It's fine so long as I'm lying down but once I get up, the fog is there. Doing vestibular therapy but can't really tell if it's helping or not. Wondering if any of you laby vets out there can give me any clues as to the fog. Have you had it? If so, how long, if ever, will it take to lift? Thanks.

    ReplyDelete
  170. Anonymous, it sounds like you have had a pretty good post-laby experience! I'm glad you are doing well.

    I wish I could advise you about the fog. I haven't had as much of that since my laby three years ago, although I've had the OTHER problems. I still don't drive on highways. And my balance is very iffy. But I'm very grateful not to have any vertigo or nausea any more.

    Have you asked your ENT about the fog?? I wish I could help with that.

    ReplyDelete
  171. No, won't see my ENT for several weeks. Have told my vestibular therapist who promises it will improve. Hope she's right. Tough to deal with every day. Other than balance and driving how are you doing. Overall, are you glad you chose the laby?

    ReplyDelete
  172. I think she probably is correct. If you keep doing the exercises to get your brain to make the needed adjustments, the fog should begin to clear. It might take awhile. My experience with MD is that nothing happens quickly.

    Yes, I'm extremely glad I chose the laby. Even though I have bad balance and constant low-level dizziness. The most important thing for me was getting rid of the constant, extreme symptoms of vertigo and nausea, and those are gone.

    I've just gone through probably the most stressful two months of my life, culminating in a genuine emotional trauma (watching my mother fall and break her nose and knock some teeth out) and my MD did not even whimper.

    Three years ago, I wouldn't have been able to do any of what I do now. So although I'm on disability and don't feel 100% by any stretch, I can honestly say that the laby has improved my life a great deal.

    ReplyDelete
  173. Thanks for that insight, Peggy. Sorry to hear about you mother but glad you no longer have the murderous MD symptoms. That,in a nutshell,is why I chose to go the laby route. Any other laby vets out there who can share their experience? My view, five weeks post-surgery-- is that it's a tough surgery but it's got to be worth it in the end. Laby is tough; MD is worse.

    ReplyDelete
  174. I have not posted in many months because I did not want to discourage anyone who might be considering a laby. My story is similar to Peggy's. My surgery was 2 1/2 years ago and my vertigo, which had become nearly a daily experience, is absolutely gone. So, I have no second thoughts, no regrets about having the surgery. That said, I still battle side effects that neither my otologist, my GP nor my psychiatrist can explain. My balance is still poor. I have many symptoms indicative of depression, so I am on two anti-depressants. But I have many functions and interests that are not found with depression. I try to take one day at a time, a line I used to think was an empty cliche. I am lucky that my wife has a very good job and is very understanding. Like Peggy, I am not 100% but my life is far better with laby than it would have been without.

    ReplyDelete
  175. Thanks, John. Sorry to hear about your longterm symptoms. I'm five weeks post-laby and still having trouble with dizziness and what feels like a heavy fog on my head. From your note and Peggy's, looks like I shouldn't expect improvement any time soon. That said, like you and Peggy, I'll take this over the vertigo. Thanks for your note and still would like to hear how other laby vets are doing post-surgery.

    ReplyDelete
  176. Has anyone had the vestibular nerve surgery. I am scheduled for consultation at Vanderbilt in a couple of weeks and that option will be discussed.

    ReplyDelete
    Replies
    1. hello anon
      my only advice is.
      alot of option before vestibular nerve surgery
      regards
      ali

      Delete
    2. If you read this thread, you will see a few of us have had the surgery and discussed it at length. Also, do a search on this blog for labyrinthectomy and you will find more information on it. There are also other threads on this blog that cover labyrinthectomy from time to time.

      Delete
    3. Here is a link to the options that Vanderbilt's otology department looks at:

      http://www.mc.vanderbilt.edu/documents/billwilkerson/files/Meniere%27s%20Disease.pdf

      Anonymous, are you considering the labyrinthectomy or the nerve section? Both are technically "vestibular nerve surgery."

      Delete
  177. I had the Labyrinthectomy Surgery in Aug.2012. It has been almost 7 months and I have problems. I don't have the severe vertigo attacks, now I have constant fog in my head. Head seems to want to bobble around. Don't do too much reading or stay on the computer for any length of time because it makes me queasy. Riding in the car makes me dizzy. When I get up in the morning it is the worst, after laying down for so long. My balance is way off. I Walk short steps and still feel like I want to tip over. The ringing in BOTH ears is bad. In the dead ear it is obnoxious, way worse than before the surgery. I tend to move slowly, trying to avoid any fast movements. Funny, I went back to the ENT who did the surgery and he says I should be better by now and that the surgery was a sucess. Well, it may be a sucess but the side effects are horrible and now I'm on my own. He says, get exercise etc. That itself is a challange due to balance and dizziness. Of course the vertigo is not the big ones that would take me out for 48 hours,but now I'm living with a constant fog and haze in my head. I haven't driven since last Feb. and can't even imagine being behind the wheel. I don't know what to do. I didn't like the major attacks I use to get but now my whole life has changed from the side effects and no one seems to understand. It is not like a broken arm or leg that will heel, it is just my head!!

    ReplyDelete
  178. I forgot to mention that I have had blood tests, VNG, MRI, and hearing test before the surgery and same tests after the "Lab" surgery. Tests show balance issues, which I already knew. According to the tests I should be doing good and I'm not, I just don't understand, Has anyone else out there experienced anything like this??

    ReplyDelete
  179. I have been thinking about having the nerve section since I still have some hearing in my affected ear. I was interested in the recovery time for this procedure. I plan to consider all options after I see the specialist at Vanderbilt. This will be my third visit there.

    ReplyDelete
  180. Anonymous, I had the labyrinthectomy in 2010, and the after-effects lasted for more than a year. I went through everything you mention except for the awful tinnitus. I had terrible brain fog, which caused me to lose a job, I was dizzy all the time, and my balance was terrible. When I was in a car, it looked like all the trees and buildings were jumping up and down. I was only able to do short-distance driving, and I still won't drive on highways. Any movement would set off mild vertigo, although nothing like what I had before the surgery.

    It WILL get better, but it takes time. Even now, I'm certainly not 100% back to how I felt before I began having Meniere's attacks, but I am much better than I was in the first year following the surgery. I can't tell you exactly how long it took because it was so gradual.

    Your good ear needs to learn how to compensate for the fact that your other vestibular nerve is no longer able to function at all. That is probably why your doctor recommended exercise -- it will help push the process of adjusting along. It won't feel good, and you should be cautious at first, but over time it will help, and it will probably make your recovery time somewhat shorter.

    Again, I am not back to what I call normal, and I don't think I ever will be. But this is a vast improvement on the multiple attacks I was having every day. Hang in there. I firmly believe things will get better for you. I know it's hard to be patient after all you've already been through, but there is hope.

    ReplyDelete