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oneeararmy

Hi there! Musician who probably needs CI

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Hello All,

I'd like to introduce myself here. I've recently started reading about CI (though my doctor told me several years ago that CIs aren't viable for SSD candidates like myself). I've garnered a new but cautious hope in my life after reading about all these stories. I've just started my journey on CIs - starting with a PCP appointment later this week. 

Where do I read the before/after stories? They provide me with hope and motivation.  

Regards,

Sam

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Welcome to the group Sam! 

I was implanted October 2016 in my left ear. My right ear is aided. It has made an amazing difference especially in word understanding. I had zero discrimination before the surgery. 

Like you I love music and play the flute. Music now sounds wonderful and complete (I couldn't hear higher frequencies) ? 

You can find most people's journeys here in the introduction section or on the Med El blog. Valentin and I share a post as we were both activated 2 days apart. It's under "New to HearPeers, Hello from Delaware." 

Congrats on starting your CI journey. Good luck and keep us updated!

*Megan

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Welcome and best of luck.  There are several happy SSD people with CIs in their deaf ear.  Gemma shared her story in a Med-El gut blog.  Search the Med-El guest blogs for it.  Also check out the YouTube Med-El channel and look for topics that were shared from the ACIA conference as well as from Johanna Patzold, the Med-El music specialist who is also a SSD Med-El user.  You can hear her perform (she is a singer) in the Beats of Cochlea festival.  YouTube search will bring that's up too.

 

best of luck on your journey.

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Link to Gemma Mole's SSD guest blog

 

https://blog.medel.com/tag/gemma-mole/

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Link to Gemma Mole's SSD guest blog

 

https://blog.medel.com/tag/gemma-mole/

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Link to ACIA conference interview about SSD

 

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Hello Megan and Mary - thanks for the warm welcome and posting the links. It's so great to read about your experience and it gives me renewed hope. I'm just waiting for my insurance provider on whether they cover the cost of the procedure.

I'm so glad I discovered this forum. I've been fighting a lone battle, every day, every hour for the past 7 years, especially since I got tinnitus in my deaf ear. Reading about others' stories feels comforting in that I'm not alone. Even in the middle of an intense scene in a movie sometimes I'd get distracted by the tinnitus and I'd ponder how the movie would sound with my right ear working. I don't know why I waited so late to discover this technology but it gives me the hope I was searching for and didn't find 7 years ago. 

 

 

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Hello Sam,

About rehabilitating single-sided-deafened ear professionals started to discuss 2 or 3 years ago.
The longest worry was how shall the brain integrate different sounds from both sides: the one which hears normal and the other - deafened.
Practice has shown us that science was cautious (maybe even too much) but now we're sure that, thankfully to the process of neuroplasticity, your brain will be able to understand these signals equally.
Of course, normal hearing we have - only once, but bilateral hearing add not just quality of sound than funcionality of sound-directionality. These things are not something what we should just forget about. Not to mention the biggest problem fir you - tinnitus, which patophysiology was long-time (even now still is) riddle for hearing and neuro-scientists.


Sent from my iPhone using Tapatalk

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Welcome to hearpeers! 

As im sure you have realized by now, there are plenty of people that have shared their story and also are willing to answer any questions you might have. This is a great group of folks. We look forward to getting to know you. 

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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. 

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Sam,

 

If you do not get approval through your insurance, you may want to check out clinical trials with Med-El and SSD.  That may be an alternative route to getting a CI.

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To add to what Mary Beth posted. I have heard of a number of people that had been denied initially by their insurance. They resubmitted the request and it was approved. Can't hurt to try. 

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Awesome interview! I was in the same spot at one point as for me, music and the phone took the longest to come back. I can remember getting very discouraged at one point, thinking that I would never be able to enjoy music again. Then things just started to fall into place, so to speak. Now music sounds to me exactly as it sounded before I started to lose my hearing. 

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13 hours ago, oneeararmy said:

Hello Megan and Mary - thanks for the warm welcome and posting the links. It's so great to read about your experience and it gives me renewed hope. I'm just waiting for my insurance provider on whether they cover the cost of the procedure.

I'm so glad I discovered this forum. I've been fighting a lone battle, every day, every hour for the past 7 years, especially since I got tinnitus in my deaf ear. Reading about others' stories feels comforting in that I'm not alone. Even in the middle of an intense scene in a movie sometimes I'd get distracted by the tinnitus and I'd ponder how the movie would sound with my right ear working. I don't know why I waited so late to discover this technology but it gives me the hope I was searching for and didn't find 7 years ago. 

 

 

Sam you are never alone!! And as you can see everyone here on the forum is super supportive and very, very knowledgeable. Keep asking questions and fighting for that right ear to hear ? Before my implant I had tinnitus and it was very distracting too. I did my best to ignore it. Now, it is much better and not constant! 

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Sam I can relate as I had pretty bad tinnitus for years before my CI surgery. I still do have it but I really don't notice it at all during the day when I have my processors on. They have made a big difference as far as that goes.

also you need to pay attention to what might be triggering the tinnitus. Caffeine can make it worse, lack of sleep... There are a number of triggers. 

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Well my insurance called and looks like it is covered (or atleast these two codes, which are taken from cochlear.com):

CPT Code:

69930 Cochlear Device Implantation (surgery)

L8614 Cochlear Implant System

Both are covered by my insurance. Looking forward to my PCP appointment tomorrow. It looks like there's no surgeon who does CI in my network, so I'm trying to find someone in Texas who is experienced in CI surgeries. If anyone in Texas can refer me to one that'll be great. 

I realise I'm getting ahead of myself (by researching surgeons, etc) even before my PCP has referred me to an ENT specialist but I'm just a little too excited. 

 

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It looks like you are doing the right research. I don't think there is anything wrong with doing some searching of which clinic might be able to help. Good luck in your search and evaluation. Let us know how things are going

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Check out the clinic finder on medel.com

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Thanks Adam and Mary. I found a clinic from Medel in my city but they don't accept my insurance. :( 

Also on talking with the office of an experienced surgeon CI for SSDs in the USA seems to be unchartered territory. So who do I make the case to saying I'm qualified for CI?

Is there anyone with SSD in the US who has gone through this process with their insurance company? I'd love, LOVE to talk to them. 

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On 3/21/2017 at 10:59 AM, Mary Beth said:

Sam,

 

If you do not get approval through your insurance, you may want to check out clinical trials with Med-El and SSD.  That may be an alternative route to getting a CI.

 

I'm game. I've started searching and reading about it. Do you know of a direct contact I can reach out to? 

MED-El would particularly be interested in me as a patient because I'm in the unique position of being a full-time musician and sound engineer who can help them with various things. For instance, I can take a "normal" sounding audio file and manipulate it to demonstrate how it sounds to me using various audio processing tools. I can create a tinnitus sound that is pretty close to the sound I'm hearing on my right ear MUCH more accurately than the typical verbal description given by most people. 

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Look up clinical trials or contact Med-El and ask about clinical trials.  Good luck.

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I would also try to find another clinic. Sadly, sometimes people have to travel to a clinic for treatment. I would check the clinic finder or contact MEDEL directly to help you find a clinic that is relatively close to you.

im sure you would be an asset as a musician. I could be wrong but I think they would have to have you approved as a viable candidate and have the CI for a while before doing any research.

before I went to ASU for a study they were conducting, I had to have been activated for a minimum of 6 months before they would use me as a test subject.

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Search for clinical trials like this one using Med-El in SSD adults.  I have seen several studies for adults.

 

https://clinicaltrials.gov/ct2/show/NCT02532972

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If your hearing loss, has a direct affect on your job, you can try looking for a vocational rehab in your state as they might be able to cover the cost of the CI if it is going to keep you working. 

They covered the cost of mine here in SC

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Onearmy, 

i had many problems with my left ear including 6 different surgeries, the last being a Labrynthectomy. They went in and just drilled everything out. The tinnitus in that ear when I had a profound loss was pretty bad as the hearing aids really wasn't much help. At that time the loss in my right ear was only borderline severe. I continued with a hearing aid in that ear for quite a while. I was shocked at how wearing the processor ( after implantation) helped reduce the tinnitus. Actually to the point that I don't really notice it unless I focus on it. It isn't nearly as bad even at night now when I take my processors off. I guess my brain got enough sound during the day, it gives me a break at night ?. 

Im hoping you get things headed in the right direction. I would ask about a. CI doc in Texas over on the Medel cochlear implant group on Facebook. Our freind John, who lives in Texas, should be able to recommend somebody. 

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