Labyrinthectomy

I have a friend that is scheduled to have a Labyrinthectomy..I do not know anyone that has personally had one..If anyone has had this surgery would you please share your thoughts on it..

Many thanks
Kaye

 

Hi Kaye.. I have not had a Labyrinthectomy but it is on my list of one of the options for me. I am scheduled to see my ENT on Monday and he has suggested that surgery... or putting in a shunt.. or repeating a gentamycin injection. I know you can go to any search engine on the net and type in labyrinthectomy and it will give you information about it and what to expect. I know it is cutting of the vestibular nerve which in turn means the other ear needs to be able to take over for it... so it sounds so risky beings that you could go bi-lateral... then what? that is my concern with that type of surgery. Best of luck to your friend. hope all works out well.

GinaMc

 

Gina, thanks for your response..I have bilateral shunts and they are the most conservative surgery available.I had mine done back in 1992...I would do mine again in a heartbeat...Some people do not get the same results as I did but I sure was blessed with mine...Good luck and god Bless.

Kaye

 

Thanks kaye... hopefully I will have as much luck as you did. I have to have several tests done first but i'm hoping they will be able to help me as my attacks have been more frequent recently and it's a horrible way to live.

Thanks again.
GinaMc

 

Gina, I was totally incapacitated and could not even get out of bed for 16 weeks prior to my shunts..They saved my life..Not saying they work like this for everyone because they don't but I would not hesitate to do them all over again...I will keep you in my prayers, if that is okay to say on this forum..If you have any questions, please email me...

Kaye

 

Hi,
I haven't had the labyrinthectomy but I do know it's rather drastic, so please consider it to be a last resort, after exhausting all other treatments, conventional and natural. Do lots of research.
Best wishes to you and your friend.

 

Texasgirl... my gawwwd... 16 weeks.. ok so a week of this isn't so bad. but yes it is.. I have never experienced anything like this.. yes i can get out of bed but it is only for a short while and then i have to go and lay back down. I take valium 5 mg but even then it doens't completely work... it is so frustrating. I just hope they can figure something out before I go nuts. I agree about the labryinthectomy.. that is a very drastic decision and would have to be the last resort for me. but I am looking into the shunt to see if it helps.. but first they want to do those tests I mentioned before to see what they can do for me.. I am so scared they will do the tests and say... yeah it's your MM but we think you should do an epley manuver or some more Physical therapy and send me home..... i can't live like this!

thanks for listening and for the advice...
GinaMc

 

Hi - I am going to have this surgery too. I am looking for some information and support. If your friend wants to chat...let me know. [email protected]

 

I had the laby on August 3rd. 5 weeks out I feel like a new person. I can now get up, feel great, do things all day, and into the night. I am giddy with happiness. Saying that, I agree with the others that it should be a last resort. I tried just about everything first, diet, a diuretic, steroids, valium, the meniett, sac surgery, sac surgery revison (the first one lasted 3 years, the 2nd two- Texasgal, so glad yours are longer!) and then gentamicin. I needed to go through these steps to feel comfortable with the laby. But I had no normal life left, and was miserable. I am now deaf on that side but they said I had no usable hearing anyway. It was pretty bad. So for me it was worth the risk. After surgery, so much interference noise is gone that I now feel my hearing is actually better. I was also worried about going bilateral, but I also decided that I just could not continue to live the way I was anymore. I could never have gotten a job, and it was just not a great life. I figured if there was a chance for life to return to normal I had to take it. So for me it was successful. I pray it will be long term. Lisa

 

I had a labrynthectomy in 1995. I'd do it again in a New York heatbeat!!!!!!! No more vertigo on that side...Yahoo. Bad news is I have been diagnosed since then in my other ear. Recovery was kind of yukky for about 2 weeks... extremely light headed. I couldn't cross the street fast enough because it took my eyes too long to catch up to my brain (or the other way around). After that, it was a piece of cake! Small incision behind my ear. I think the stitches melted away. I don't remember that part. I also have no chance of the hearing in that ear coming back.

Recently, because of my other ear going, I had a CT scan on my Laby ear to see if the nerves were still working, doc wanted to check to see if that ear was good enough for a CI, and luckily, it is.

Let me know if you have any other questions. I'd be happy to answer if I can.

Good luck to you
Patti

 

Patti, that is interesting. I thought once you had the laby you can't have the CI....but that's not true? Thanks, Lisa

 

Hi Folks,
I had a "laby" on Nov. 20th, 1989 and was back at work before Christmas. I had gotten to the point I could not go anywhere with out someone to hold onto. After the operation and about five weeks of recovery, I was able to drive by myself and walk alone. I did get TMJ from them drilling the hole in my mastoid, probably because I am so hard headed. Other than that I had no serious side affects. I was dx'ed with mm in my left ear in 1994. I was declared totally disabled in 2000. So I have not had a full time job since may of 2000. I still drive and most of the time can do our grocery shopping and other errands by myself. I feel that I am truly blessed because I know a woman that used to work with me and she can not drive or go any where alone. I hope that this info has helped. Be blessed. Doug

 

Hi,

I posted a thread about my laby and recovery back in March of 06. Several other forum members added their personal experiences to the thread. As you can see from reading the posts, everyone seems to respond differently. http://www.menieres.org/forum/index.php?topic=4276.0

I'm about 21 months post-op now. I do not have any regrets about my decision to have a laby, but I'd be lying to say that my life is free from Meniere's. I still struggle with balance issues, a tiny bit of nystagmus, tinnitus, nausea, and of course I'm deaf in that ear. But like Lisa, the deafness has actually been an improvement over all the tinny, loud, hyperacusis and recruitment. As with most MM patients, some days are better than others, and overall, my recovery is on an upward trajectory. I thank God each and every single night for no vertigo!

Good luck with your decision. Blessings...

Blueberry

 

Hi,
I was wondering how you are doing now?

 

I am now past 3 months post laby and as good (no-better!) than ever. Feeling great. If you are going to attempt this serious surgery I think you need to be with a surgeon who is an expert at it, and does them regularly. The quality of the surgeon is very important. Lisa

 

I had the surgery in August of this year, I am bilateral and having attacks from the other ear I am doing everthing I am told to do, I am have been in vestibular Re Hab for 2 months now, Went to ENT He is very concerned about the other ear (hearing went down again in that ear) I am VERY glad I had the laby surgery done, no more Vertigo on that side and no more disturbing background noise. (still have the tinnitus and tone changes) I have been to 4 ENT till I found MEI The best I found.

 

Paula, is that the Michigan Ear Institute? Lisa

 

Yes it is. I see Dr. LaRouere, do you go there? Paula

 

Yes. The other Paula here, who is having a laby, sees him too! He is doing her surgery. I see Dr. Kartush. I feel so very lucky to have been referred to the MEI. They have been my lifeline for ten years. I can't believe how very empathetic and kind everyone is there. One nurse starting tearing up for me when I was having problems, another came to find me in the waiting room and crouched down to whisper that they heard I was doing better once. I am So lucky to have found them. I have met LaRouere, I have great respect for all the docs there. I also agree that while I lost what little was left of my hearing from the surgery, I actually feel like I can hear better. Lost all that interference. You sound like you have been through a lot, I am glad you are at a good place. Hugs, Lisa

 

Lisa,
I Have Talked to the other Paula about her laby I have told her my story and what I have gone threw, I have been threw what I think more than my share from birth till now, the other Paula Sounds like a wonderful person. I wish her good results from the laby I will be thinking of her all day on the 19th, Who every has had the surgery you know how you feel right after it.
I am so glad to of had this surgery like you said I can hear better out of my other bad ear, and I and very glad to chat with such understanding people.
Hugs to you too.
Paula