[NFB-DB] cochlear implant experiences

Mon Nov 4 16:14:30 UTC 2019

hi Marsha;

No, I don’t have any vision at all, I guess you were never really sure about that, but I   don’t…

Sent from my iPhone

> On Nov 4, 2019, at 8:54 AM, marsha.drenth at gmail.com wrote:
> 
> 
> Gene and Chris,
>  
> Both of you do not have any vision? Correct.
>  
> Thank you for sparking this very interesting discussion.
>  
> Thank you,
>  
> From: NFB-DB <nfb-db-bounces at nfbnet.org> On Behalf Of Gene Richburg via NFB-DB
> Sent: Sunday, November 3, 2019 9:24 PM
> To: NFB Deaf-Blind Division Mailing List <nfb-db at nfbnet.org>
> Cc: Gene Richburg <gene5402 at austin.rr.com>
> Subject: Re: [NFB-DB] cochlear implant experiences
>  
> Hi guys;
> 
>  
> 
> I have had my ci for probably about 4 and a half years now.
> 
> At first, when I would hear voices through it, some voices would sound like a man and a women mixed together sort of, and the sound was like I had a really bad ear infection.
> 
> Also, the sound was so new, that it sounded like my head was this really big medal ball, and when my audi was giving me simple words like hotdog, ice cream, bluebird, words like that, it almost sounded like she had a little of a reverb, and like she was singing the words, even though she wasn't really!when I was over at my mom's house, and I was back in the bedroom, the ac was kind of loud because the ac was just outside the room, so it got the most air flow in the house, so the vent was only open just enough for sufficient air to come through, so, I wanted to see what it would sound like if I took my ci off with the ac on, so I did, and it left a very metallic sound, very much like a digital sound effect trailing off behind it.
> 
> Samantha on my iphone sounded like she was talking much higher and quite monotoned at first untill I got more adjusted to the implant, she sounds normal now.
> 
> Basically, it sounds very distorted at first, kind of like a radio off the station, but that should clear up after some time, the more you wear it, and use it, the quicker you ajust.
> 
> There is a grocery store in Texas called H E B and if you go into huge ones like they have here in
> 
> Austin, it is really noisy, and even though I still have a ha, I found I was unable to hear people that didn't know me, so, I had a friend of mine go with me, and man, was it loud, but I said, there's no point in putting off the oppertunity to get adjusted as quickly as possible, so I just wore the ci, and just lived with it.
> 
> When you have one of these, you or some else that has it might notice, in the way of music, that notes sound very distorted and soft almost like there out of your range to hear them.I have advanced bionics, which was recommended to me since it supports virtuil frequencies, it only has 16 electrodes, unlike cochlear Americas, but, to my knowledge, ab is the only one that supports this virtual frequency technology, basically, what they're doing, is much like what ha manufactures do, but in the case of the ci's, it's a little different.
> 
> So when you have a loss that's so severe, that ha's are not able to accomidate the frequencies you need, they use this virtual frequency cloning technology.
> 
> What this does, is takes frequencies that you're not able to hear, and clones them to frequencies that you can here.
> 
> So, the a b ci's do something similar to that, they take frequencies that they don't physically support, and copy them to ones they do support, so the result is more of a range of hearing, but you don't have to use that feature if you don't want to.
> 
>  
> 
> It also has something called clear voice, this feature I should say tries to provide releaf from unwanted noises, but in doing so, it makes speech you're trying to hear kind of scratchy and muted, and my audiologist told me that I'm not the only one that says that, she has 4 other deaf-blind patients who also say the same thing.
> 
>  
> 
> I do have unpredictable sound localization issues, as my ears are not balanced, and I'm actually in the process of having to get my other ear implanted, as my hearing has gotten to the point that the most powerful ha is only 5 percent stronger than the one I have now, and I've had two audiologists tell me that they really think I should consider it, so I'm trying to work through the twc system to get it, but I don't know when it's gonna get aproved, as they have a lot more loops and hoops to jump through to get it approved.
> 
>  
> 
> I hope this has been helpfull, just everyone keep in mind, that everyone has different experiences, so you might experience some or all of the things I have should you decide to have this done.
> 
>  
> 
> Gene
> 
>  
> 
> On 11/3/2019 6:49 PM, Chris Westbrook via NFB-DB wrote:
> I can imagine that would be a real mourning process. I have had hearing and vision loss all my life, I could have gotten a cochlear implant a long time ago but was too scared. Lol. So I dont know what normal sounds like. I will say music sounds really bad through the implant, but that might get better still, I have been focusing more on practicing speech recognition than music. So interesting that people can have such different experiences. 
>  
> On Sun, Nov 3, 2019 at 7:26 PM Showe Trela via NFB-DB <nfb-db at nfbnet.org> wrote:
> Hello. I had a CI put in about a year and a half ago and I personally am glad I have it, but don't use it as much as I should. I got randomly sick a couple of years ago and lost all my hearing in my right ear. I am still going through a terible mourning process so I think that is why I hate my CI so much. It didn't hurt at all for me. I find the app pretty accessible. I hate how it sounds because I still have normal hearing in my left ear and my CI gives me a headache and I have to slow down voiceover to understand my phone. Never had to do that before... I still have lots of trouble localizing sound even when I wear the darn thing. Like I said. I am still mourning my hearing loss. Blindness is nothing to me because I've been blind all my life but losing my hearing was hard... 
>  
> Showe
> 
> Sent from my iPhone
> 
> 
> On Nov 3, 2019, at 12:21 PM, kara bohnenstiel via NFB-DB <nfb-db at nfbnet.org> wrote:
> 
> 
> As the mother of a 14 year old who is totally blind and on Nov 21 will receive the surgery-- I would love to hear anyone's experience... Here's one question: firstly, did you wake up in a lot of pain from the surgery? Glad to hear you are glad you did it, Chris!
>  
> Best,
> Kara
>  
> On Sun, Nov 3, 2019 at 1:58 PM Chris Westbrook via NFB-DB <nfb-db at nfbnet.org> wrote:
> I thought it would be neat to start a thread on cochlear implants. I have been "activated" for almost three months now and am glad I did it, but it has been a challenging journey. Just curious what others' experiences have ben. I am considering writing an article for the braille monitor on my experiences, as I feel that the broader blind community needs to be more educated about the experiences of some of us. I am also willing ot answer any questions anyone may have. Look forward to responses. Thanks and have a great day.
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