[NFB-DB] Cochlear Implant Advise

[Eric V]

Thanks so much to all who responded. Gene, thanks for the detailed &
thoughtful response - that is particularly helpful.

I look forward to any additional insights & thoughts.

I will be reaching out to a number of you in the near future & look forward
to meeting you at this summer’s convention.

Sincerely,

Eric

On Mon, Apr 9, 2018 at 2:10 PM, Gene Richburg via NFB-DB <nfb-db at nfbnet.org>
wrote:

> Hi Eric;
> I have had my CI for about 3 years now, and I’m still adjusting to it.
> One thing about these, the experience is different for everyone.
> Some people only need one year, two adjust while other peoples brains take
> longer.
> I got the advanced bionics because they are able to create virtual
> frequencies that other CI developers supposedly are not able to do yet, so
> the idea is, once you get adjusted to it, or your son, for that matter, he
> will be able to hear more with that one than with cochlear america.
> Also Advanced bionics also has an accessory called the aqua case, this
> little box allows the ZI processor to become waterproof, because the case
> seals and locks shut, so then you have a cable that plugs into the case,
> and that cable plugs in to the processor, then the head piece has a
> microphone that the audiologist has to set up in the programming so that
> the processor will know to use that microphone and not the microphone on
> the processor.
> I have also been told that it is also possible to listen to music with the
> Advanced bionics CI, how ever, people who ware the nucleus processors from
> cochlear america are able to listen to music, but the Advanced
> bionics implants are suppose to pick up the softer sounds that the other
> CIs are not able to perceive.
> over all, the CI is gonna sound very distorted like a radio off the
> station, and everything may sound very unfamiliar for a little while, some
> people say voices sound like cartoon characters for a few days.
> There are some doctors or surgeons that are uncomfortable with implanting
> there patients with advanced bionics implants because the electro array is
> a little heavier than the other implants.
> So, I guess I was fortunate enough to have a very experience cergant to do
> mine.
> It’s also worth noting that depending on his cochlea whither he will even
> be able to have all of the electrodes inserted.
> The advanced bionics implant has fewer electrodes than the cochlear
> america CIs, and it does take a better skilled curgent to do the Advanced
> bionics implants.
> Also, I have a hearing aid  on my right side and the CI on the left, and
> because of the differences between the two, it is harder to tell direction
> because of the imbalance between the way the two devices are allowing me to
> hear.
> If I had waited about a year later, I would have gotten a free hearing aid
> with my CI, as Advanced bionics  has started doing that now, because the
> hearing aid they provide follows the programming of the processor, meaning
> when ever you change a program on The implant processor, the hearing aid
> would follow that.
> If you want, you can ask me any other questions you want, let me know if
> you would like me to give you my email or phone number, either one would be
> OK, however, if we need to have a longer conversation, a phone call might
> be more appropriate.
> Thanks Gene
>
> Sent from my iPhone
>
> On Apr 9, 2018, at 12:15 AM, Eric V via NFB-DB <nfb-db at nfbnet.org> wrote:
>
> Dear Division Members,
>
> We are considering a cochlear implant for our youngest son & would really
> appreciate your input & insights.
>
> A bit of background: He attends our local high school where he is a
> sophomore. He is totally blind without light perception, a fluent braille
> reader, super-techie, & loves to swim & sing in our church choir.
>
> We first noticed his hearing was not as good on the left around 4th or 5th
> grade, & by 6th grade he got hearing aids on both sides. He has been using
> the FM system in school for some classes & doesn’t find it helpful for
> others.
>
> His hearing had been stable for about 2 years. The last 2-3 months however
> he has seemed to have had more difficulty hearing on & off at school & home
> too, but it was somewhat inconsistent & he had a few colds, but the last 4
> weeks or so, we have been having to repeat things more & talk louder. His
> recent audiologist appointment confirmed the significant & definite
> reduction. MRI is normal. We saw a neurotologist who is recommending a
> cochlear implant on the left. On the right, he has moderate hearing loss &
> has been getting by with the hearing aids. In a quieter environment outside
> of school he often prefers not to use even the right hearing aid.
>
> Questions:
>
> Are there any special considerations given the total blindness & partial,
> though poor, hearing on the 1 “good” side?
>
> From a independent travel, mobility standpoint how good/accurate is
> localization with a cochlear implant?
>
> There are several cochlear implant systems on the market; any thoughts on
> which is best, or best for a teenage techie?
>
> Is there something newer & better in the near horizon that might be worth
> waiting a year or 2 for?
>
> Following a cochlear implant is there any residual hearing in the ear the
> procedure was performed on?
>
> Our son enjoys swimming – does that affect choice of cochlear implant
> systems?
>
> Are there other questions we should be asking or things we need to
> consider?
>
> We live in Los Angeles, but are very willing to travel if that is what is
> best. Any thoughts on who is best to perform the procedure?
>
> Thank you very much for your thoughts & advice in advance.
>
> All the best,
>
> Eric
>
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