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.
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
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107 comments:
doctors told me meniere's doesn't go to other ear. ihad labrynthectomy in 2001. good ear is fine
I hope it doesn't, good luck and stay in touch
David
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.
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
Here are some links regarding the BAHA:
http://www.cochlearamericas.com/
http://www.youtube.com/watch?v=dvZBUWMN7Yo&feature=related
thanks I appreciate it!
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...
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
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...
Peggy,
You are right it is a tought decision.
good luck and stay in touch
David
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?
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
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.
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
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
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
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
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
just had mine done on September 15th all seems to be going well 6 years was long enough for me to deal with this
I hope that everything works out for you, stay in touch and let us know
David
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
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
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.
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*
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.
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
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.
thanks again Peggy for sharing your story it will be a real help to alot of folks.
stay in touch
David
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
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.
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
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
thanks everybody for the comments!
David
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.
Curious if anyone else out there has had the same issues? If so please let me hear from you.
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.
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.
@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
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
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
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.
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
thanks for the comments
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
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.
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.
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
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.
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.
thanks everybody for the comments
David
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.
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
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
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
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.
thanks for the comments
David
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
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
@Gail,
Good luck on your surgery. I hope everything works out ok!
David
@Tara
thanks for the comment
David
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.
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
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!
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.
thanks everybody for the comments and information
David
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.
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
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!
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
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
thanks for the comment and good luck to you also
David
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
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
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
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
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
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.
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!
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
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.
Hi Judy,
good luck on your surgery! Let us know how it turned out.
David
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
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
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
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
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
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???
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.
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!
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~
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.
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.
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.
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.
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?
Hi Peggy,
I'll put it in an upcoming post
thanks
David
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
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.
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
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!
Hi Peggy,
I will add that on to an upcoming post
David
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.
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.
David, are you okay? Nothing has posted since August and we have written.
Gail in California
Hi Gail,
everything is okay, nothing has changed on this end
DAvid
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?
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
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
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