[NFB-DB] Cochlear Implant Advise

Fri Apr 20 01:50:19 UTC 2018

I think you are doing the right thing ERic. I know for me i have been very
hesitant to get a cochlear implant because of the risk inherent with any
surgery. I do pretty well with hearing aids though, so that makes the
decision a little easier. As far as strategies for managing things in the
interim/even post surgery should that be the route you guys pursue, I would
say a few things to keep in mind would be to find a great audiologist you
can trust for one. It doesn't even have to be an audiologist at a big
university hospital etc., I have a local audiologist here and she is
awesome. I also know that social situations with large groups of people can
be challlenging for me, so I choose to try to be in smaller gatherings
whenever possible. I attend a smaller church prefer quieter restaurants,
etc. I do turn down some opportunities at times, but my friends understand.
I am still able to live a fulfilling life as a deaf blind individual. I
hope this is somewhat helpful.,

On Thu, Apr 19, 2018 at 4:11 PM, Eric V via NFB-DB <nfb-db at nfbnet.org>
wrote:

> 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
>>>
>>> _______________________________________________
>>> NFB-DB mailing list
>>> NFB-DB at nfbnet.org
>>> http://nfbnet.org/mailman/listinfo/nfb-db_nfbnet.org
>>>
>>>
>>> _______________________________________________
>>> NFB-DB mailing list
>>> NFB-DB at nfbnet.org
>>> http://nfbnet.org/mailman/listinfo/nfb-db_nfbnet.org
>>>
>>>
>> _______________________________________________
>> NFB-DB mailing list
>> NFB-DB at nfbnet.org
>> http://nfbnet.org/mailman/listinfo/nfb-db_nfbnet.org
>>
>>
>> _______________________________________________
>> NFB-DB mailing list
>> NFB-DB at nfbnet.org
>> http://nfbnet.org/mailman/listinfo/nfb-db_nfbnet.org
>>
>>
>
> _______________________________________________
> NFB-DB mailing list
> NFB-DB at nfbnet.org
> http://nfbnet.org/mailman/listinfo/nfb-db_nfbnet.org
>
>
-------------- next part --------------
An HTML attachment was scrubbed...
URL: <http://nfbnet.org/pipermail/nfb-db_nfbnet.org/attachments/20180419/7063f963/attachment.html>