oneeararmy Posted March 25, 2017 Author Report Share Posted March 25, 2017 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? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted March 26, 2017 HearPeers Heroes Report Share Posted March 26, 2017 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 insightSent from my iPad using Tapatalk Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted March 26, 2017 HearPeers Heroes Report Share Posted March 26, 2017 I will have to check but I thought it was approved. I'll see what I can find out. Maybe MaryBeth has some insightSent from my iPad using TapatalkSo 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 thoughSent from my iPad using Tapatalk Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 26, 2017 HearPeers Heroes Report Share Posted March 26, 2017 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. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted March 26, 2017 HearPeers Heroes Report Share Posted March 26, 2017 Thanks Mary Beth, I thought I had talked to folks who had the procedure done here Quote Link to comment Share on other sites More sharing options...
oneeararmy Posted March 26, 2017 Author Report Share Posted March 26, 2017 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. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 26, 2017 HearPeers Heroes Report Share Posted March 26, 2017 Try again. They are adding people almost daily. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted March 26, 2017 HearPeers Heroes Report Share Posted March 26, 2017 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. Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
Barbara Posted March 26, 2017 Report Share Posted March 26, 2017 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. Quote Link to comment Share on other sites More sharing options...
oneeararmy Posted March 28, 2017 Author Report Share Posted March 28, 2017 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. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted March 28, 2017 HearPeers Heroes Report Share Posted March 28, 2017 Usually they are pretty quick, not sure what's up. I'll email one of the moderators Quote Link to comment Share on other sites More sharing options...
oneeararmy Posted March 28, 2017 Author Report Share Posted March 28, 2017 Just now, Adam said: Usually they are pretty quick, not sure what's up. I'll email one of the moderators Thanks Adam! Quote Link to comment Share on other sites More sharing options...
oneeararmy Posted March 28, 2017 Author Report Share Posted March 28, 2017 Just now, Adam said: Usually they are pretty quick, not sure what's up. I'll email one of the moderators Thanks Adam! Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted March 30, 2017 HearPeers Heroes Report Share Posted March 30, 2017 There is also the FB group of hard of hearing musicians called The Association of Adult Musicians with Hearing Loss.Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted March 30, 2017 HearPeers Heroes Report Share Posted March 30, 2017 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. Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted March 31, 2017 HearPeers Heroes Report Share Posted March 31, 2017 Wynden Royal ill look for a post Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted March 31, 2017 HearPeers Heroes Report Share Posted March 31, 2017 Yes - Wynden Royal.I believe she even mentioned Texas at some point... but this would be to coincidental...Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted April 1, 2017 HearPeers Heroes Report Share Posted April 1, 2017 I checked the archives and can't find any posts from her Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted April 2, 2017 HearPeers Heroes Report Share Posted April 2, 2017 When Med-El updated our Forum it changed several people's user names. Maybe her user name changed as well. Quote Link to comment Share on other sites More sharing options...
Salderman24 Posted July 24, 2017 Report Share Posted July 24, 2017 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. Quote Link to comment Share on other sites More sharing options...
oneeararmy Posted July 24, 2017 Author Report Share Posted July 24, 2017 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. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted July 24, 2017 HearPeers Heroes Report Share Posted July 24, 2017 How frustrating! I am sorry your CI center backed out. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted November 13, 2019 HearPeers Heroes Report Share Posted November 13, 2019 @MED-EL Moderator SSD folder please thanks Quote Link to comment Share on other sites More sharing options...
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