Deciding between labyrinthectomy and gentamicin

I’ve battled it for 11 years. I’m 39. You name it...I’ve done it including surgeries. If I was over 50 I’d get the labby in 2 seconds.
I’d be closer to retirement. My kids would be in HS/college. For me it’s my age that holds me back.

Good luck with your decision. 50 attacks this year. That’s hell. Fingers crossed whatever you choose is s huge success.

 

I have to be brief as I’m sitting on an airplane waiting to take off. Getting a labyrinthectomy this week. My dr gave me the option of gent but said there’s a significant likelihood I’m putting off the i evnevitsble and would end up with a labyrinthectomy anyway. I’m 44 and have been dealing w this for 7 years. I haven’t driven in months due to the uptick in attacks. I have 3 kids ages 6-15 and they all need mom well. I’m ready to be DONE.probably naive but I’m not too concerned about the potential complications. I’m very nervous about the recovery process but it seems to be the only way to the “other side”. Recent tests show my good ear is 100% fine but I still worry about little pings and pangs in there, as well as occasional tinnitus. I still worry but at this point am not all that functional so going to take the leap. Have to run...

 

And plane is delayed again wanted to add that the anxiety component that you mention is completely true in my case too. Never knowing what’s right around the corner. Can I drive my son to his practice safely? Can I walk Fhe dog around three neijbirhood and not get stranded a block away (happened recsenrly)? Can I buy tickets for a show with my husband that’s happening two months from now and be able to go? We’ve had to change a lot of plans — first world problems, I know — as a result of my illness. Trips cancelled, kids performances I’ve missed, you name it.

Ok now maybe we are taking off...

 

Just curious, why does age make you not get a laby?

 

Wow sorry for all the typos up there ^^^. Was typing so quick thinking I’d have to shut off phone at any moment.

 

If I live to 80...40 years with one ear is a long haul. I already have some hereditary hearing loss in my good ear. All of my older relatives wear hearing aids. So I do consider she heavily in my decision. If was 60 it would be a no brainer.

But also if I had 50 attacks since Jan 1 like Clare I’d do it tomorrow at 25. That’s awful. Feel bad for her. Hope it works out.

 

I have had one ear since 1997, since i was 49. I dont give it a thought on an average day. I do wish i could echolocate though. But i dont work in a train yard or anything so it is not a big deal. My surgery was not optional and it was thought i would retain hearing so i didnt have to weigh the options like you do.

If you do have a laby have a discussion with your dr about whether you will still be able to have a cochlear implant down the road if the need should arise.

 

Mac have you considered a BAHA? I’m getting one this week.

 

That's awesome...I know you have been going through hell. I hope this surgery allows you to get back to a normal life. I know how hard it is with young kids!!

I would probably go with just one ear first...and see how it goes. My cousin is deaf in one ear from Meniere's. She wears cross overs hearing aids (started wearing them around age 45) and swears by them. So I would give that a shot first I think. But I am sure the Baha is great!!

Good luck!!!

 

Cros aids were not helpful to me either. I am not sure if i just didnt put the effort into it, i dont wear bifocals either, or the fault is the aid but i have had two sets over the years which both ended up in the garbage. A lot of money for noth8ng for me. Maybe different for someone else.

 

Clare, I had one gent shot before deciding on the laby. If I had to do it over again I would not have the gent shot. The shot gave me some relief for about 8 months. Gent stopped the violent vertigo but everyday I was light headed and somewhat dizzy. My gait was off, stumbling around like a drunken sailor. And still having that horrible monkey on my back, wondering when the next drop attack would occur. So this is my 2 cents worth. Skip the gent and go for the laby. I had one overnight in the hospital. Walked out of the hospital on my own. Was driving after 2 weeks. The quickest way back to being normal is walking each and every day as much as you can. Walk on different terrain. The more you walk the sooner your brain will compensate for unilateral vestibular system.

What ever you decide I wish you the very best going forward. I lived with the beast for 12 hellish years. My life returned to normal 5 years ago. I have never regretted my decision.

 

Clare, Whatever you decide I wish you the best. As others have said the Laby seems to do the trick for a lot of people. I know you have probably searched the archives but there are a lot of positive results.Good to know you can still get a Cochlear if you need it.Mayo sounds great.Good luck keep us posted!

PleaseNoDizzy-Good luck with yours as well. We are all rooting for both of you!

 

Good luck with your decision. The Laby will free you from the beast! I had mine at age 49.

 

Hello clare

I look at the forum regularly but dont post often because of dealing with a lot of issues at work (bullying). I have had gent injections and it stopped the really bad vertigo attacks that made me very sick. I do feel off balance and light headed a lot of the time but I am hoping that vestibular rehab will help with that. I wanted to let you know there is a newer steroid treatment

https://www.imperial.ac.uk/news/175995/severe-dizziness-treated-with-steroid-injections/

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)31461-1/fulltext?code=lancet-site

I have also had this and it has helped me. In the Uk where I am this new treatment is offered instead of gentamicin. Its not 100% so there are no guarantees but I just wanted to let you know about it.

baloo

 

Gutsy call. I think you're doing right by your self.