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oneeararmy

Hi there! Musician who probably needs CI

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Just an update: So far surgeons are telling me that cochlear implants for Single Sided Deafness aren't FDA approved. This is what I heard several years ago too. I thought FDA approval has recently been changed. Is this not the case?

If this isn't the case, how do I convince a surgeon (who could be in my network) to perfom this surgery? I'm still not clear on the process for candidacy. :-(

My PCP can refer me to an ENT of my choosing, but so far even the most experienced surgeon I've talked to hasn't done Cochlear Implants for SSDs. What do I do?

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Just an update: So far surgeons are telling me that cochlear implants for Single Sided Deafness aren't FDA approved. This is what I heard several years ago too. I thought FDA approval has recently been changed. Is this not the case?
If this isn't the case, how do I convince a surgeon (who could be in my network) to perfom this surgery? I'm still not clear on the process for candidacy. :-(
My PCP can refer me to an ENT of my choosing, but so far even the most experienced surgeon I've talked to hasn't done Cochlear Implants for SSDs. What do I do?

I will have to check but I thought it was approved. I'll see what I can find out. Maybe MaryBeth has some insight


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I will have to check but I thought it was approved. I'll see what I can find out. Maybe MaryBeth has some insight


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So far I see clinical trials for CI for ssd in U.S. But it doesn't look like it is approved here as of yet. I will continue to look into it though


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There are several members in the FB group

 

Med El CI Discussion Group

 

search for it and ask to join

 

who are SSD and have been implanted in the US through their insurance.  

 

Post your question there and I am sure they will respond.

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Thanks Mary Beth, I thought I had talked to folks who had the procedure done here

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3 hours ago, Mary Beth said:

There are several members in the FB group

 

Med El CI Discussion Group

 

search for it and ask to join

 

who are SSD and have been implanted in the US through their insurance.  

 

Post your question there and I am sure they will respond.

I did ask to join the group couple days back and haven't been accepted yet. 

 

Thanks for the finding Adam - that's really disheartening as I mistakenly told the hospital to check again thinking the FDA has gotten the approval. 

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Try again.  They are adding people almost daily.

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Don't give up yet. There is a lot of misinformation or old info on the Internet. As  MaryBeth said, I'm almost positive there are people with ssd  that got implanted in the U.S. 

Definitely look into the Medel Facebook group. 

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Only recently underwent my second CI, and it is wonderful to hear completely again. What a new world this becomes! This morning, in church, we had a marvelous solo and piano music that all but brought some of us to our feet, me included. Music is one of my most missed experiences when I was without hearing - down to 5% in each ear. Now I can enjoy great music and song. Thanks to MED EL.

 

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On 3/26/2017 at 10:58 AM, Adam said:

Don't give up yet. There is a lot of misinformation or old info on the Internet. As  MaryBeth said, I'm almost positive there are people with ssd  that got implanted in the U.S. 

Definitely look into the Medel Facebook group. 

 

Is there a trick to join the Discussion Group? This is the 4th time I've clicked Join (Request Sent) only to check back later and see it still showing "Join". 

 

Can someone please add me? I'm Sambasevam.

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Usually they are pretty quick, not sure what's up. I'll email one of the moderators

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Just now, Adam said:

Usually they are pretty quick, not sure what's up. I'll email one of the moderators

Thanks Adam!

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Just now, Adam said:

Usually they are pretty quick, not sure what's up. I'll email one of the moderators

Thanks Adam!

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There is also the FB group of hard of hearing musicians called The Association of Adult Musicians with Hearing Loss.


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On the other side, I do not see a reason of SSD implanting with a CI.
Long ago, here was active a person under alias of Royal "something" who posted a little bit so - she was implanted with one CI.

Finally, we have our lovely moderators Leigh and Ben who are very supportive and will point you at the right direction - they work for Med-EL.

Beside music, a SSD is the hottest subject now at all CI congresses.


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Wynden Royal

ill look for a post

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Yes - Wynden Royal.
I believe she even mentioned Texas at some point... but this would be to coincidental...


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I checked the archives and can't find any posts from her

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When Med-El updated our Forum it changed several people's user names.  Maybe her user name changed as well.

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On ‎3‎/‎21‎/‎2017 at 10:21 AM, oneeararmy said:

 

Thanks Ivana and Adam. Curing tinnitus alone would give part of my old life back. Yes, I miss out on hearing stereo, pinpointing sounds, certain conversations, etc. but the tinnitus has been a bigger issue than all of that. Even my recent discovery of MED-EL was through Googling a solution for managing tinnitus in SSD (which led to a promising research article on SSD CI patients, and so here I am).

Is there anyone here who had single-sided deafness and hence tinnitus in the deaf ear, due to labyrinthitis? I know it's a very specific ask, but I'd love to talk to someone who has the same condition as I. 

Hi! I have been searching for you! lol I too, have had the exact experience. SSD caused by a viral infection labyrinthitis. I am completely deaf on my right ear now. It happened one year ago this month. I was on vacation and woke up with spins, puking, vertigo and insane loud ringing. I didn't know then what it was or that it would be permanent. I also have intense wind noise, tinnitus and also get musical ping, beeps and dings here and there. The wind noise is so loud its almost louder than my speaking voice. I have gone through all testing to receive a CI and now we are just at the part where we submit to insurance to see if I get approved. I'm so torn and nervous about getting a CI. But I have a very active loud life. I teach music and sing, I have three loud boys and our life is just a fast paced loud environment. I'm sorry this happened to you. I wouldn't wish it on anyone.

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5 hours ago, Salderman24 said:

Hi! I have been searching for you! lol I too, have had the exact experience. SSD caused by a viral infection labyrinthitis. I am completely deaf on my right ear now. It happened one year ago this month. I was on vacation and woke up with spins, puking, vertigo and insane loud ringing. I didn't know then what it was or that it would be permanent. I also have intense wind noise, tinnitus and also get musical ping, beeps and dings here and there. The wind noise is so loud its almost louder than my speaking voice. I have gone through all testing to receive a CI and now we are just at the part where we submit to insurance to see if I get approved. I'm so torn and nervous about getting a CI. But I have a very active loud life. I teach music and sing, I have three loud boys and our life is just a fast paced loud environment. I'm sorry this happened to you. I wouldn't wish it on anyone.

I'm so sorry to hear that. It's a horrible thing to experience and I wouldn't wish it on anyone either. 

Just to give an update: Initially the insurance approved the procedure, but the hospital which would do the surgery wanted some changing of the contract which the insurance wouldn't do. So the surgeon/hospital has backed out and I'm back to square one now. 

 

At this point, I'm contemplating 3 options - 1). Find a cochlear implant surgeon in network somehow (tried, couldn't find)   2). Ask around for clinical trials (Med-El?)  3). Appeal to the insurance, but it's a really long shot.

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How frustrating!  I am sorry your CI center backed out.

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@MED-EL Moderator

SSD folder please

thanks

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