I am not sure a laby is right for me at this point since I have full fledged vertigo incidences very infrequently. What I do have is being lightheaded a lot, brief and frequent periods of imbalance, horrific almost daily headaches, hearing distortion and loss, and horrific tinnitus. This started in November 2016. I am still hoping to do something that does not require a laby. Maybe this is false hope. After the steroids are stopped I am doing the viral regiment. This is getting to the point where this disease is ruining my life. I stay inside and do nothing most days, and talk to no one. I have an appointment later this summer at the Emory Hearing Clinic to review my options.
Jimmy Alvin - our MM sounds very similar!! I've only had vertigo a handful of times (knock on wood), but I have constant pressure, tinnitus, and hearing loss. I have TERRIBLE hyperacusis where sound physically hurts and makes me super lightheaded. I am unsteady on my feet and have brain fog constantly. I rallied last night and went to a ball game because I feel terrible that my boyfriend always has to stay in. It was so awful I almost ended up in tears. I looked around at all the people having fun and realized that used to be my life. I completely understand how you feel! I too feel like my life is slowly being destroyed and I honestly don't know what else to try!
The Laby sounds fine, but has anyone heard anything more about the EDB surgery good or bad? Wouldnt this be a better option than Laby?
TLB, please hold on with me. Tonight I am having horrific tinnitus, roaring, and hearing distortion. It is getting to me. Maybe we can find some way back to enjoying life.
Hi Jimmy, The first year of my illness I spent ungodly hours at the doctors being tested and spun around and injected with steroids into my ear. I spent many hours locked up just wondering if I would make it to the next day. One doctor told me that I would adjust to my new life and my brain would re-route itself. ( help me he did say this ). But here I am two years later. I am still looking for answers. I am taking the drugs my new ENT suggested, and I've stopped working full time. I am working on the stress factors in my life. My hearing is slightly worse, and I have to monitor how much time I spend in public. Joining this group I realized that there are many different paths to try before I take the most severe approach. I just want you to know that you have my deepest empathy. I hope you have found a doctor you trust and this person gives you the best advice for your situation. Most of all, do your own research!. I've read everything I can get my hands on.
I have hearing loss and issues in both ears so a Laby will not help me. If I kill the hearing in one ear, I am not sure the other will take up the slack!
I was concerned about going deaf before I had my laby. I thought too, what if I become bilateral and need a laby in my good ear. My OTO made it very clear that I would not have to live in a world of silence. As long as the cochlear is left intact one can have an implant. Technology has come a long way. I would choose a laby over living a life of depression, feeling like crap every day, and wondering if I am going to have a vertigo attack. For me a laby means freedom and the chance to live a normal life.
To answer "Life and Other" questions....once it was clear I had intractable vertigo and the laby call was made....they admitted me the same day. It was done the next morning. Other ear taking over the full balance function (plus of course eyes and brain and touch all working together) was minimal. I had my life back. Deaf in the one ear but it was awesome. Lots of really good people and posts above. A lot of experience. And of course you have to be positive which is the offending ear!!! I did get MM in the other "good" ear eventually. And am deaf in that ear now. Making the call to laby the second ear is of course a little more tricky....even with a combo laby. If you do get a laby try to get them to save the cochlear in case you need it.....but know over time it will fill with scar tissue and is never as good for an implant as a non surgical ear. So there are risks. If they say its a 50% chance you will go bilateral....that means its a 50% chance you won't....that is pretty good. If you are barfing your guts out every couple of weeks etc etc. And you have tried all of the other interventions and treatment....its a no brainer.
Thanks guys so much for responding. I talked to my ENT and he told me I was shit outta luck with any other treatment options. He wouldn't even do the gentamicin injection! He told me I was screwed. So.. I am finding a new ENT who won't be so close minded when treating bilateral menieres. Wish me luck! And for me, my hearing is really bad in both ears (70 decibels in both ears) and I lose about 15 more every 6 months) and I use sign language for the most part. Being deaf does not concern me. At this rate, I'm going to be completely deaf in the next few years anyway. I just don't want to be sick anymore!
Life I hope you can find an OTO who will listen to you and go ahead with the laby. I wish you the best. You deserve to live the life you choose.
Life AndOtherTragedies I am so sorry to hear you are suffering so much. I also can't understand why doctors are more concerned about hearing over the quality of life. I had a few attacks each week for months and as me hearing was really good ( atypical Menieres ) no destructive surgery was considered. I was offered EDB to which I agreed straight away as success rates are really high. It has been 9 months now and I have been vertigo free. I got my life back back, I am working full time and I am enjoying my new life. If at any point of my life vertigo is back I am not going to hesitate and ask for a laby. ( if I am listened to !) What is good or some hearing if you spend most of your time in bed having vertigo? Fight for your life! All the best.
I would say no, as far as the laby ear is concerned. I had a VNS and the doctor wanted me to continue with low sodium and a diuretic. He said it could possibly keep MM from going to the other ear. My MM became bilateral several years after having the VNS.
I would have a double laby tomorrow if needed. I can use a Cochlear implant to hear if needed. Yes, they do Laby's and CI's in the same operation, just email or ask Dr. Rauch or Dr. Mattox at Emory. My advice is to get to the nearest teaching hospital such as a John Hopkins, Harvard, Emory ect...... and find a Doctor who understands your misery. I would do anything i could to get an appointment with Dr. Rauch at MEEI /Harvard or Dr. Mattox at Emory in Atlanta Or a possibly somebody at Johns Hopkins. I can have a great life using a cane, or a walking stick or even a scooter or power chair. I can enjoy traveling, watching my kids and grandkids (when/if they come one day) play baseball, hockey, soccer, basketball ect.... But life with your head in a bucket or even fearing leaving the house is no life. Two great men on this forum AKJIM and SJWO1 are bilateral with no vestibular function and they live extraordinary lives. Reach out to those on this forum who are living your worst nightmare and you will find out something completely different than your biggest fears. you will find out they do things ordinary people do, they just dont have to worry about the mm, attacks, fear ect... It is absolutely amazing to me that somebody can walk into a doctors office and kill a child via abortion or even ask a doctor to assist you in suicide but you can't find somebody to alleviate your misery with a very simple operation so you can get your life back. Go Figure!!!!! PS: I would call Dr. Rauch at MEEI tomorrow and do everything i could to get up there to see him or Dr. Douglass Mattox at Emory in Atlanta, Ga. Good luck