[NFB-DB] Cochlear Implant Advise

Thu Apr 19 20:11:26 UTC 2018

Hi Scott,
Thank you for the thoughtful & detailed response.
Our son Petras is on board with pursing a CI, but we are still in our early
phase of learning about all this. We have spoken formally & informally with
several audiologists & 1 CI neurotology surgeon so far. A more formal
evaluation is being set up & we plan to meet with a few other neurotology
surgeons as well & carefully assess the device options.
Petras is 17 now & will ultimately the the one who makes the final decision
about if to proceed, with which device & team, & the timing of it.
Its a big decision with lots of details to pay attention to.
We don't want to rush in, but nor do we want to wait until it becomes more
urgent.
As background, I'm a physician - clinical & researcher - technically a
pediatrician, though my focus is very sub-specialized to just inflammatory
bowel disease (Crohn's disease & ulcerative colitis). I am used to
technical medical reading & am also very aware of how much of the spectrum
of true expertise & skill of those practicing in the medical field,
especially when it comes to rare or very sub-specialized areas. Hearing &
CIs are outside of my sphere of expertise, so there is a lot to learn &
consider.
Patient/user perspectives & insights often differ from those of physicians
& other medical professionals, thus we really appreciate all that everyone
in the Blind DeafBlind Division has to offer.
As we move forward with this, we will also happily tap in to advice on
strategies to help Petras in the interim.
Thanks again.
Eric

On Tue, Apr 10, 2018 at 6:16 AM, Scott Davert via NFB-DB <nfb-db at nfbnet.org>
wrote:

> Hello Eric.
> I am not an audiologist, and do not yet have a CI myself, but I will share
> with you what I have learned from talking to others and the research I’ve
> done myself. I will be getting a CI next February, but did a lot of talking
> to people and also a lot of research online.
> How does your son feel about getting one? I know for myself it seems
> rather daunting and I know I’ll need to adjust to the different way in
> which I’m going to be getting sound. From what I know, the entire way in
> which you hear is changed. You go from hearing acoustically with hearing
> aids to hearing electronically with the CI This means that you have to
> reprogram your brain to hear. This, of course, will throw off sound
> localization big time, because you have one ear which still hears like it
> always has and the other which hears completely different. I know some
> people who eventually get implanted in both ears do have some success with
> sound localization, but the few bilaterally implanted blind people I know
> don’t feel comfortable crossing busy streets, for example.
> We have 3 brands available in the US: Cochlear America, Advanced Bionics,
> and Med-L. What he would find most beneficial would depend on his specific
> situation. THe CI surgeon I talked to at CHapel Hill here in NC told me
> that they have had the most success maintaining residual hearing with the
> Med-L implants, but that there is no guarantee that they can preserve
> hearing with any of the options. He also told me that he would do an
> Advanced Bionics implant on me if I had a strong preference for it, but
> that the electrodes on the AB system were very stiff and it sometimes makes
> it challenging to get as many electrodes into the cochlea with that brand
> for this reason. Cochlear America seems to have the most advanced hardware
> line from what I can tell. Their latest process,or, the n7, is MFI
> compatible, meaning it can directly interface with an iPhone. Its
> apparently also possible to have a hearing aid which will work in
> conjunction with the processor with the Cochlear America CI and a ReSound
> hearing aid. As Gene pointed out, the AB system also has some advantages.
> The ability to have a water proof shell over the processor is something
> that all 3 companies support.
> Anyway, I hope at least some of this info is helpful. I am not stating a
> preference here because everyone is different. From what you wrote, it
> sounds like he has already been through a CI evaluation? That involves a
> comprehensive audiological exam, the CT scan, and then a consultation with
> an audiologist specifically well versed in the various CI options. If this
> last part has not oh occurred yet, this is an important one to have so that
> you can see the various options and discuss with this audiologist his exact
> situation. I’m sure I just scratched the surface, and again, I’m just
> someone trying to make sense of all this myself, but I hope this is of some
> help.
>
> Best of luck,
> Scott
> Sent from my iPhone
>
> On Apr 10, 2018, at 1:23 AM, Eric V via NFB-DB <nfb-db at nfbnet.org> wrote:
>
> 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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