Q&A: Cochlear implants and Ménière’s Disease

13 11 2011

Hiya Tina

I wondered if you have any experience of Meniere’s Disease and it’s effect on a cochlear implant. I have had my implant for 3 years now but just recently it is struggling with fluctuating levels. I visited the implant centre but they could not help much and promised to contact Advanced Bionics. I have thought about bilateral but have not got a clue where to begin. Maybe my dreaded Menieres disease would badly affect a second implant anyway. Bit fed up with things at the moment.

– Colin Lennox

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10 responses

13 11 2011
Tina

Hi Colin

I’m afraid I don’t have any experience of Meniere’s but I know people who do. Hopefully they will chime in here, or you can ask on one of the cochlear implant forums. Have you asked on Menieres.org?

If you want to go bilateral, talk to your cochlear implant team, and be sure to give them plenty of good reasons to apply for funding. My post on this issue should help you – apologies for the bluntness of that post, it was written in response to people who turned on me after I shared my time and information with them. If you want to go bilateral on the NHS, not all cochlear implant users will be supportive – there’s a lot of jealousy out there. But I wish you luck and certainly recommend applying. You will get support on the Hearing Journey forum, that’s for sure.

21 11 2011
sophie

I have had bilateral cochlear implants now for 2 years and have found that they have given me a new founded confidence.

27 11 2011
ava

I have found your blog really informative, I am about to undergo the knife and have bilateral cochlear implants. I have been looking through the internet for much information and have found that this blog has proved the most useful.

27 11 2011
Tina

Glad to have helped, Ava! If you have any specific questions, you can ask them on the CI forums.

12 04 2017
Gerri Harden

I have Menieres Disease. I had 6 Genomyasin shots in the right ear, and now I am deaf in that ear, but the dizziness stopped. tThat was 5 years ago. Now the dizziness is back, off balance each day and feel like throwing up. I only have 36% hearing in my left ear. My E,N,T, wants me to have a Cochlear Implant and I am scared. Can anyone help me out here?

12 04 2017
Tina

Hi Gerri, Hopefully someone with Menieres can reply. You can also ask on a couple of Facebook groups: “Hearing Loss Worldwide” and “Cochlear Implant Users”. Someone has bound to have gone through a similar experience and can advise.

12 04 2017
Shawn

Ive had Menieres for 17 yrs and deaf in that ear for as long. I was fine with one ear but the second one started to go as well. My doc put me on Spirolactone 2x a day and it saved my life!!!!(I also quit drinking, smoking and no caffeine) I also have repositories for the nausea and of course meclizine. Ive only had a handful of very very small vertigo attacks in the last 4.5 years now. I tell everyone I know with Menieres to see if they can get it. I had the CI done exactly one year ago and love it. It can cause some dizziness for some but I havent had any. Hope this helps,
Good luck!!

12 04 2017
Valerie

Hi. I had very severe Menieres for 32 years with little break between attacks. A year ago January I was implanted on one side. I am totally ecstatic that I have not had even one episode since. My surgeon promised me he would get rid of it and he did. I have had a few minor episodes of dizziness that last only a couple of minutes but no vertigo. Best wishes.

14 04 2017
Marty

I’ve had bilateral Menieres got almost 30 years. Over time Menieres destroys the cochlea. Typically, the fuzzies subside, but the hearing loss remains. The hearing loss from Menieres led to my first CI 5 years ago, and the second 3 years ago. They have given me my life back. I recently moved and had had to get a new CI doctor. He told me a couple of interesting things about CIs and Menieres. It was his opinion that if you got a CI from AB or Cochlear, it was likely to reduce Menieres symptoms. No so with MedEl because of their smaller electrode. I got AB, and the hearing flexuation has stopped. Also, due to the damage to the cochlea, you should not expect residual hearing after CI surgery. Initially I was upset about not having any residual – I am deaf without my CIs. Then I realized that I hear so much better with my CIs, it was well worth it. I have no regrets about getting CIs.

14 04 2017
Tina

I have Menieres and have recently had a bilateral implantation. Prior to the op my one “working” ear had hyperacusis, diplacusis, distortions, fluctuations, tinnitus and anything else you can think of …….. I still get a lot of distortions but I am getting so much more understanding of speech. I do hope that one of these days my brain will realise it doesn’t HAVE to hear these strange sounds still, that it will be able to realise it once heard without them. The ear which had been dead for 20 yrs is gradually hearing more, tho it never had any problems with distortions etc during its working life.

I am beginning to get music!! Much to my surprise, still sounds weird at times but it is improving slowly, in fact it seems as tho music is helping to improve my hearing overall.

I am only getting on for 7 months along the journey, so I don’t know if this info is of any help.

Also try the Menieres Society.

– Sylvia

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