If you have Meniere’s disease then you know that in one way or the other your hearing will be affected. In fact you hearing may be damaged even before you ever see a doctor. Unfortunately, the treatment options for meniere’s often involve hearing loss, some might be a little loss and other treatments might result in the total loss of hearing. Is that a trade off that you are willing to take?
Considering the awful and unnerving experience of a meniere’s attack, the easy answer would be of course, take my hearing if it will stop the spinning! I know that I have felt that way many times especially when I was going through the worst of my attacks.
But losing your hearing shouldn’t be taken lightly. Before I had the gentamicin injections my hearing was poor in my ‘bad’ ear. After the shots I thought that my hearing would pretty much stay the same and it did at least for a little while. Now it looks my hearing is getting worse. I find it difficult to comprehend conversations at times and I know that it is annoying that I have to ask whomever I am speaking to repeat what they have said. But I can’t complain because I know that a lot of people with meniere’s have lost all their hearing, either due to the illness or certain surgeries like Labyrinthectomy or Vestibular neurectomy.
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Sunday, March 21, 2010
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12 comments:
I was very happy to have run across your blog as I am in the process of coming to terms with my Meniere’s disease, learning to think differently and build new perceptions of my relationship to the world.
I am recovering from several severe vertigo attacks. It has really wiped me out. I am slowly emerging from “brain fog” which lasts for days. It’s hard to believe that the inner ear can wreak such havoc. I went for a long time without any significant vertigo. But now the vertigo has been more frequent. I was diagnosed as having Meniere’s ~ six years ago with the usual treatment [diuretic; meclizine]. Initially, only my left ear was affected – periodic fullness and some hearing loss. It has now progressed significantly. Steroids have not helped.
My ENT doctor says that my left ear is essentially dead. What little sound that does enter that ear is just “mush.” A hearing aid is of no use because my left inner ear has been “destroyed” by the disease. But I still have the fullness and tinnitus in that ear, which is now constant. To my dismay, my right ear is now also affected, possibly the reason for the renewed vertigo? I have moderately severe hearing loss in it. I am getting a hearing aid next week. Hearing loss sucks! The things we take for granted. But I always think of my late wife, who died at the age of 42 from metastatic leiomyosarcoma, and my son, who died at the age of 17 from complications related to his Duchene’s muscular dystrophy, and what they went through. Hearing loss seems so trivial, but is nonetheless devastating as I confront the total loss of my hearing.
Denis,
You make a good point about thinking differently when you have meniere's and life's perceptions really do change.
You are right about hearing loss sucks! but you really put it in perspective when you wrote about the losses in your life.
You certainly must have a lot of inner strength to go through all the personal tragedy and then have to deal with meniere's on top of that. I wish you well and stay in touch.
David
hearing loss is definitely not a good choice but i would definitely go with no vertigo. at least when you eliminate the vertigo, you have a chance of a normal life. my sister is deaf and has been since birth so i know having severe hearing loss is a major challenge and i don't take that prospect lightly.
denis-so sorry for your losses. i cannot imagine having the strength to get through that. i lost a former student last summer to duchenne's muscular dystrophy. what a tragic condition. you are absolutely right in that we are lucky that we have this disease which may make us miserable but at least it isn't life-threatening. good luck to you.
David,
I am 28 I have bi-lateral Meniere's with hearing loss in both ears I have hearing aids and learning ASL. The menieres is very aggressive. I am getting my first gentamicin shot on April 2nd. if it doesn't work my family, Doctors and I are considering the labyrinthectomy. I have a team of doctors at Vanderbilt.I am so sick all the time. The veritgo is sucking the life at me. I cannot do anything. I am barely able to keep a job. I do not have anyone to talk because I do not know anyone with this disease. I am afraid and feel lost. What do think about the labyrintheectomy? What was your recovery time for your frist shot? I am getting it in the OR.
Megan
Megan,
I had a total of 4 shots and it took my about 2 months for my balance to get back to normal. But the recovery time is different for everybody. In my case I consider the gent injections a success, although I still occasionally get the vertigo and nausea, it is nothing like before the shots, when I was getting sick all the time.
As for the Laby. I hate to say one way or the other because I'm not a doctor.
Just remember that you aren't alone with this illness, although the public doesn't know much about it, there are many, many people who suffer from it. Feel free to comment on my blog and you might also want to check out a meniere' forum. http://www.menieres.org/forum/ is a great place to ask questions, there are a lot of people there who know what you are going through and are happy to help.
Feel free to contact me if you have any questions and please stay in touch
David
Denis, so sorry for your losses. Megan, I have had at least four to five gentamyain shots and they have given me a "normal" life back. I had such debilitating attacks, i could not work, drive, go anywhere alone. It didnt take me that long to get over the side effects of the shots. Just feels like Im drunk sometimes, but nothing like the "spins". My doctor said a lot of his patients get one shot and they're fine for years. I have a deaf cousin and used to work with the deaf. I would rather trade my hearing to never have vertigo again. Not having hearing is a horrible fate, but at least you can function. WIth the spins, you can barely take your self to the bathroom, let alone hold a job , focus on kids, relationships..
Sorry for the VERY longwinded comment!
Thanks Lori I appreciate the comment and to me there isn't such a thing as a longwinded comment. I love all the feedback that I can get.
thanks again and stay in touch
DAvid
its 2.10 in the morning i cant sleep been reading this,the doctors stoke nhs in uk took 4-6 months to ay we think its menieres but they were not sure, my left ear is or was the worst i had gent injections, and a tube inerted in my ear drum to see if it would help i forget what its called.basilcy it not worked went back to doc who preformed this, he said theres nothing more im willing to do i think we may have done the wrong ear or it in both... he said my advice is work from ..... come see me in 12months,,, u may thank me... im sorry for rambling an bad spelling im not a computer wizz, i had some qustions,,, as i feel like a doc doing lots of researchh, im going for 2nd opion, i wanted to know what u thought of 1. cochlear implants 2.vestibular nerve section ... in 12months i lost my job, my drivers licence and friends, and my long suffering girlfriend i fear will be next.. paul
putter_paul@yahoo.com
Paul,
I would definitely go to see another doctor, preferably one who has experience with inner ear disorders like meniere's disease. There are a lot of different procedures and surgeries that a doctor can recommend make sure that your doctor tells you what the side effects are of each surgery and procedure. One doctor suggested that I have a particular type of surgery done. I talked to 2 different doctors and both of them didn't recommend it and they said that the chances of it working were small. So it is always a good idea to learn as much as possible about meniere's disease.
I am sorry to hear about how rough the last 12 months have been for you. If it is any consolation there are a lot of people just like you who have meniere's disease and have suffered greatly in their life. You are not alone.
Please keep in touch and hang in there better days will come
David
DAVID
Thanks so much for the reply you are so right in what you say and im gonna see what they say net maybe even get 3 4 5 doctor, reading through this stuff is very helpfull.. i think it just how it change in 12months very disheartening,, frustrating which way to turn,the ringing ive sort of got use to the dizzyness and drop atacks r the thing i struggle with but got to keep on going,,, 1 thing im seem to having problems with is MEMORY, AND GETTING out what i want to say has anyone ever heard of this, prob take me some time to reply or find anyone reply i had to copy paste just to find yours.. thanks so much
i hope this finds u all well as u can be..,
paul
sunny uk
Paul,
I hadn't any major problems with memory at least regarding the meniere's disease. If I find anything out I'll post it.
stay in touch
David
I too have MD and wanted to add that I find it helps me to wear ear plugs when driving or anywhere that it may be loud. Since any excess noise seems to aggravate and worsen the condition I feel it may help to preserve hearing for the times when maybe it isn't acting up so much.
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