Hey guys, So I have an appointment in a few weeks for another steroid injection. I think when I get there I am going to ask my doctor to do the gentamicin instead since I got only 3 days relief from the steroid injection. However, if this does not work, my doctor won't do surgery except for the shunt surgery, and I would rather get the laby because it works, and I don't want to need several surgeries over the years. I was thinking about going to a teaching hospital, as they might be more comfortable because they have way less liability. I'm not sure. Does anyone have some advice? Good doctors near Portland, OR? (I am kind of limited by my insurance and I have no idea what this surgery would cost but I'm willing to travel a bit.)
It's a good choice when all else fails and you know for sure you have MM and not MAV. But it costs a LOT if you don't have insurance. The cost will depend on how much time you spend in the hospital recovering. Some folks have reported only one day because they didn't have much balance left anyway, and so it was easy to start walking again. Others have reported up to a week just to learn to walk again with a cane. Everyday in hospital is going to run 2k easy.
Get some other opinions. Shunt is not known for long ter success i dont think. Laby does sacrifice hearing but is way less complicated and risky than a vns. Could you go to House Ear in LA, they have some of the best there.
My question is will the tinnitus and roaring stop with a laby? I have ringing and roaring in both ears.
It might, but there's no guarantee. A lot of folks with a laby still report the same ringing and tinnitus. Some report worsening.
I still have tinnitus after my laby. The roaring gets louder if I am in a loud environment. But it is a much milder form and for the most part I can ignore it. I would not hold off from the laby because getting rid of drop attacks and vertigo and the constant worry of when will I have another drop attack far outweighs the tinnitus.
I had the shunt surgery 5 years ago--have tinnitus but not really bad, just annoying. No vertigo! No drop attacks. Ongoing head pressure--not sure it's Meniere's or something else and of course hearing loss in both ears requiring aids. Balance is not great but I still walk without a cane. Have had balance therapy two times. That does help. I see a doctor in the Midwest and he is with a teaching hospital. He said I would 'not' get vertigo again. I can only hope he's right. So far so good with that--the worse part of Meniere's.
For me, the tinnitus and pressure don't bother me as much. But I get vertigo all the time, and drop attacks. I'm about a year away from getting my degree and I would like to be able to get a job after and right now, there is no way I can work. I'm trying to get my menieres under control but I'm young, and my doctors seem to think that my hearing is more important than my quality of life. I know sign language, and I've already lost 60% of my hearing in both ears, so losing more of my hearing is not something that concerns me too much. Its very frustrating.
What doctors, where? Have you discussed the fact that you are just starting your career and could not work? Something is missing here. Either they dont understand you or you dont understand them.
First of all go back and try to read some of my old post . I went thru everything from JOH to 9 gent injections . I can honestly say I wish I had went straight to the Laby because the Laby gave me my life back totally . I was playing in golf tourneys a few weeks after my Laby in 2011 . My advice is forget anymore gent ,vitamins, steroids , ect and get your life back with the Laby . There is a reason everyone who has the Laby stops visiting this site . We dont need to except to pay it forward !!!! Good Luck my friend !! PM me if you need to .
Oh and by the way Dr Mattox told me that 50% of the Laby patients would have hardly any tinnitus and luckly I was one of that 50% Good Luck Get the Laby and move on Dont let Menieres control your life !!
It really depends. Several folks here have full balance recovery, but others have reported limited balance recovery. One guy specifically said he gave up his riding because he could never get more than 70% of his balance back. Age is a big factor, as is how much balance you've already lost due to the disease. Another factor is the surgeon. Make sure you get someone with an excellent track record. There is about a 2-5% failure rate, which probably depends on the surgeon. Make sure they pack it with gentamicin to ensure that the nerve ends don't grow back.
What Hurricaneone said^^^^ Life with Vertigo and dizziness is no life at all, especially if something can be done about it!!!! I had my laby the same year Hurricaneone did and by the same doctor at Emory University. I am just as normal as any other 48 year old man walking the earth except i am deaf in my right ear. I just entered and came in 5th place in the over 45 year old age group surfing tournament here in Cocoa Beach while on vacation with my kids and wife. I water ski, snow ski, surf, boat and anything else i want to do......I have no symptoms in my laby ear except as what Redwing said in noisy places or when my Sister in Law falls off her rocker and starts acting like Kim Kardashian i notice the tinnitus. Do not let this crap control your life!!! Life with Vertigo is no life. And the anxiety, stress, worry all goes away with the laby because you know you will never spin or get dizzy again. Get on with you dreams and life. Good luck
I have the equivalent of a laby. Surgery for an acoustic neuroma destroyed the 8th nerve in my right ear when i was 49. I cannot specifically address riding a motorcycle but i can tell you i ride a bike all the time. As long as the balance nerve in the other ear is perfect, it is pretty easy to regain very servicable balance if you work at it by walking a lot and doing some simple balance exercises. What happens is you learn to perform a lot of your balance with your eyes. This means when looking straight ahead in the daylight it is easy to balance. At night when it is dark it is a different story. Looking back over your shoulder is also tricky. It took me a few years before i could turn around in the shower with my eyes closed without thinking about it. But i did learn to. The biggest challenge for me that i did not over come entirely was that when i start to fall, i do not catch myself and regain my balance like i did when i had two good balance nerves. The other thing about losing hearing entirely in one ear is that i cannot tell where sounds come from. I have found this to be a bigger impact than the balance loss because there is no way to compensate, you just can never again echolocate. Hearing aids do not address this. Now ... if you ever have the balance in the other ear compromised, then it will of course change the scenario. When i got hydrops in the good ear, even though i do not have vertigo, my balance degraded slightly. For instance, i still ride a bike but not quite as well as i did. I am u steady when there is oncoming bike traffic in a narrow space and my eyes are distracted. It has been 20 years since i lost the balance nerve and 10 since i developed hydrops. Strangers seeing me walk or ride do not know i have any issue. If you have vertigo you probably already have damamge to the balance nerve so i am not sure what is being saved. Make sure you know it is not caused by migraine and you know which ear is affected and then talk to several good neurotologists.
Hurricane, Bulldogs and I are all on the same page. Life is to short to live in fear. Get the laby and start living again. I do everything I want to do and more without fear of falling on my face. I will admit when I am in dark rooms it can be tricky balance wise but I know that so it no longer scares me. Wishing you the very best of luck!
Thank you all so much for the replies! I'm getting really excited thinking about this surgery and what it would mean to have a life again. I have a few more questions.. For those of you who have had the laby, how long did you wait to get the surgery? I mean, once you decided to get it? And did your ENT recommend it, or did you have to push for it? Also, does anyone know if they perform labyrintectomy surgeries on both ears if bilateral? or does that completely destroy your balance? I'm bilateral, with one ear that seems to be way worse. But in the future if my "good" ear starts getting out of control, would that be an option?
Being bilateral does complicate things a bit , but all hope is not lost . There are people I know that had to have a double VNS because the vertigo was destroying their life . Their balance is compensated by the eyes , feet and body . These people have a fairly normal life that is a bit more of a challenge than if you are unilateral . Their vertigo was taken away by the VNS . If your hearing gets really bad cochlea implants are available . You really need to visit a good oto neuro doctor in your area that can get you on the right track . Im sure others will chime in with some good info for you and maybe one of the double VNS guys will talk to you .
Life, i am sorry, i have not followed all your posts. Have you tried antivirals? I ask because it may halt the progression and even reverse some damage. As one who has one bqlance nerve destroyed and one slightly compromised, i have to say that losing both entirely is not to be taken lightly. While i believe you would learn to cope, do not be fooled, it would not be anywhere near normal. Talk to several surgeons. Talk about their success rate and how they define success. You may think success means normal function with no side effects and they may think it means you are not dead. If you are considering anything this radical, go to the best even if you have to travel and spend money. I cannot stress enough that all surgeons are not equal. Get multiple opinions.