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Implant for single-sided deafness


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Hello - I am new to this forum.  I suffered sudden hearing loss from an ear infection while pregnant back in June 2019 at age 35.  I had steroids, injections, tried hyperbaric...nothing improved the loss.  I waited the recommended year to see if there would be any recovery, which there wasn’t and am not looking into an implant.  I have terrible tinnitus, hyperacusis, profound loss in the high frequencies and normal low frequency hearing.  A few questions i wanted to send out to this forum...

Did anyone have a doctor tell them that an implant would not help due to normal hearing in the other ear?  I had one say this as well as one say it would be beneficial.

Is it strange to have electronic hearing in one ear when the other is normal?  Is it noticeable for a long time - totally understand everyone’s experience is different, but I am quite nervous about this unknown.

Will an implant improve my ability to be in noisy environments?  This is completely intolerable at this point and definitely no way to live.

Did anyone have bad sensitivity to loud sounds and then have it improve post implant?

 

Thanks so much for any feedback on experiences.

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@Diane

welcome to HearPeers.  I am sorry about your sudden hearing loss.  @Kylie is single sided deaf with a cochlear implant.  Yesterday during our monthly virtual coffee chat she shared a great story.  Maybe she will repeat it here.  Wishing you the best!

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@Diane hello!

These are very similar to questions I was pondering before my own surgery.

I became deaf in one ear very suddenly at the age of 37. Also tinnitus. My other ear is excellent.

I saw an audiologist and ENT who both told me that a CI would be the ideal solution. I have now had it for 1 year and it is fabulous! Having a hearing side is very helpful, and in a brief time the brain clearly adapted to the mixed inputs and sorted it into one coherent sound. Earlier in the process it did sound electronic overall but that fades with time and rehab practise. Single sided hearing also means that practise is done in a particular way (to isolate the CI side) but that is merely logistical and there are a few threads where that is discussed. There is no cause for a doctor to tell you that single sided deafness is not a good reason for CI, there is so much evidence to the contrary all around the world. The nuances of your individual hearing loss is important though. Make sure you are getting advice from specialists who work with single sided deafness (like audiologists, ENTs, rather than just general practitioners.)

1 year in - I have great functional hearing, I score normal on some hearing tests! I can hear pretty well in busy environments though I don't have your extra sensitivity so I can't speak to that. But it also dulls the tinnitus so that I forget it's there. Most days I completely forget I have any hearing impairment because the world sounds normal in 90% of scenarios. I mostly remember when I take it off at night! I am glad every day and have no regrets.

There are quite a few pages here where people discuss single sided deafness so I recommend reading through them. Plus the whole internet! I read and read before I made my decision.

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@Kylie Thanks so much for sharing your experiences!

The doctor that told me I wouldn’t like the implant didn’t seem to have much experience with single-sided deafness....the other surgeon and audiologist from Columbia definitely did, so I just wanted to throw that question out there on this forum.  

Which implant/processor do you have?  I am reading through all the different information on the different types trying to figure out what would be best for me... its a bit overwhelming. 

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@Kylie

chances are you have either the internal Synchrony or internal Synchrony 2.

Med-El has been using Synchrony/Synchrony 2 in most regions for awhile.  
 

@Diane Are you in the NYC region?  My CI center is in NYC.

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Diane,

I am  sorry for your hearing loss and all that follows.

i also had sudden hearing loss, and like you I retained some hearing in lower frequencies.  When I got CI, I did in fact lose that remaining hearing on the left.

i still have my nagging tinnitus and the Hyperacusis, 5 months after activation. 
I wear my CI everyday, and I feel better with it than without it, but because of tinnitus I’m really never comfortable.

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Posted (edited)

Hi @Diane

I had recruitment for several years. I would go to work and other places and the central AC would sound extremely loud. When I got my CI, the recruitment disappeared. All the places I frequented before the CI were now so quiet now that I had the CI. 

I'm wondering whether the same thing could happen with hyperacusis. But given @Lori m experience, there are no guarantees that the hyperacusis will disappear. Hopefully others who had hyperacusis will chime in. 

I wish you well with your hearing journey. Keep us posted. 

Edited by Jewel
Made an error
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@Diane

Yes there is a marked difference for me. I prefer Rondo2 and when I was tested with both, I scored higher with Rondo2. However, in very noisy environments I prefer Sonnet. The sound settings possible with Sonnet are different from Rondo2. Rondo2 only offers omnidirectional mic settings whereas Sonnet offers more mic options. 

However since Rondo3 has two mics and Rondo2 has two I'm expecting the sound from Rondo3 to be different from Rondo2.

I also prefer Rondo2 now that we have to wear masks. 

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  • 3 months later...

Hi all.  I'm about to schedule my surgery for a CI for my left ear.  Nervous, but not sure I see any downside.  The commitment to therapy to make it all work seems like a lot, but I'm motivated - it would certainly be nice to hear again in my left ear!  I think this is a Med-El site so I'm not sure if I'm allowed to say that I'm leaning toward the Advanced Bionics CI.  Picking between vendors might be the hardest part of this.  How did you guys go about it?

Thanks.

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@KennyW

Wishing you the very best on your journey!

My right ear was implanted first.  It had heard when I was younger but then spent 24 years not processing any sound following a surgery for Meniere’s.  I used to call it my dead ear.  Smile

I chose Med-El for their electrode array options.  The factor that impacts our hearing with CIs the most is the internal component of a cochlear implant.  The external processors and accessories change very rapidly.

Whichever brand you choose, I wish you the best.

Here is a link to a video of my CI journey in case you are interested.

 

 

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On 11/20/2020 at 2:55 AM, KennyW said:

Hi all.  I'm about to schedule my surgery for a CI for my left ear.  Nervous, but not sure I see any downside.  The commitment to therapy to make it all work seems like a lot, but I'm motivated - it would certainly be nice to hear again in my left ear!  I think this is a Med-El site so I'm not sure if I'm allowed to say that I'm leaning toward the Advanced Bionics CI.  Picking between vendors might be the hardest part of this.  How did you guys go about it?

Thanks.

Kenny you can choose what suits you best! Do all the research you can. I myself did not have a choice, my clinic only implants medel. Which I am very happy with.

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2 hours ago, Kylie said:

Kenny you can choose what suits you best! Do all the research you can. I myself did not have a choice, my clinic only implants medel. Which I am very happy with.

Thanks. I am going to speak to company reps this week and get more info. It seems like a “no-brainer” for me to get a CI since I’m dead in my left ear, but it is also obviously a big decision. Hard to believe I completely lost hearing in September and am scheduled for surgery in 3 weeks!

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HELLO, SSD SINCE JANUARY 2020 IN LEFT EAR. MY ISSUE IS A UNILATERAL COCHLEAR IN NOT A MEDICALLY NECESSARY PROCEDURE FOR COMMERCIAL INSURANCE AND IS ALSO NOT COVERED BY MEDICARE WHICH I WILL BE ON IN 6 MONTHS. HAVE A BAHA ON THE LEFT SIDE BUT I WOULD REALLY LIKE TO GET MY HEARING BACK ON THE LEFT TO HELP WITH SOUND DIRECTION. DOES ANYONE HAVE ANY SUGGESTIONS? ANY CLINICAL TRIALS AVAILABLE OR A SURGEON WHO WILL DO THE PROCEDURE FOR SELF PAY( IN THE MEDICARE FEE RANGE)?

MIKE FROM FLORIDA

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@MIKE js

here are some links to clinical trials 

https://clinicaltrials.gov/ct2/show/NCT04506853?term=Med-el&draw=3&rank=14

 

https://clinicaltrials.gov/ct2/show/NCT02203305?term=Med-el&draw=4&rank=22
 

 

It seems some single sided deaf children (age 5+) and adults are getting CIs approved in the US.  It may depend on insurance or the CI center. Wishing you the best.

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I have a question on SSD.  My left ear is worse than my right ear, but I have hearing aids in both.  I'm considering CI in my left ear,  while continuing to use a hearing aid in my right ear.  I've seen that Med-El has the Synchrony implant for SSD, but would that not be something I would consider if I use a hearing aid in my right ear?  Do I have to have regular hearing without a hearing aid in my right ear to be considered for a Synchrony implant?

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