1. < Hearing Loss

Cochlear Implant Experiences

Posted by Tom Lehman @tlehman, Feb 25, 2023

Hi folks,

I'm new to this forum and have searched (will be searching more) for existing threads about experiences getting a cochlear implant. I am 73 years old and have had progressive hearing loss for some 30 years. Both ears are essentially the same. My audiogram shows that I have little or no hearing above 2000 hz. My word recognition is around 34% in both ears. I currently wear Phonak BTE aids.

I do well understanding speech via a bluetooth connection to the HAs and can easily carry on phone and zoom calls. Understanding people in real spaces is far more difficult. I'm pretty good one on one in a quiet setting though I hear some people better than others. Noisy environments are very hard as are many people who speak more softly, quickly, and with higher pitched voices.

Both a local audiologist in NM and the team at Mayo feel I would benefit greatly from a CI and I'm tentatively scheduled to do that at Mayo in April. If indeed my existing hearing is preserved, I may be a candidate for a hybrid solution amplifying my residual lower frequency hearing coupled with the implant for the higher frequencies. Otherwise I would rely on the CI completely. Regardless, I will wear a new hearing aid in the other ear.

I find the decision challenging mostly because 1) there's no going back, and 2) the process to relearn language sounds like it is daunting. Will I see enough benefit to make this worthwhile? How well will I navigate the journey of relearning language and what is that like? I've been told that it'll all sound like noise and will be a bit overwhelming at first.

I am encouraged that so many people seem to feel it was all worthwhile. It's just hard to know what the journey is going to be like.

I'm looking for people who can share with me their experience going through this process - the good, bad and ugly. I'm also looking into the mentor program that Cochlear runs as I've pretty much decided on that brand.

Thanks

Tom

Interested in more discussions like this? Go to the Hearing Loss Support Group.

Tom Lehman | @tlehman | May 2, 2023
In reply to @jcech344 "Tom, Here are some additional good links: https://www.hearingtracker.com/ A forum for hearing aid users all over..." + (show)
@jcech344

Tom,

Here are some additional good links:

https://www.hearingtracker.com/ A forum for hearing aid users all over the world. There is a large group of CI users here also.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7199932/ A broad 2020 summary from NIH of studies of hearing improvement with CI.
https://cochlearimplanthelp.com/ This is a wonderful site and contains a very detailed comparison of the different CI available

Another responder made an excellent suggestion about preparing a list of expectations and determining whether these are realistic for you. I would add another. Prepare a list of accommodations this will require in your daily life to determine if you are comfortable with them.

Cheers
John

Jump to this post

Thanks, John, for that info and those links. My daughter had suggested to me the idea of expectations and whether they are realistic. I’m working through that. Your suggestion of a list of accommodation is excellent too. Beyond what I’ve been doing for a long time to accommodate my dependence on hearing aids, what do you see as accommodations I’d need to make for a CI?

One of the great benefits of a good forum like this is not only getting some answers and resources, but getting help asking the right questions. Thanks for your help with both.

Tom

REPLY
1 reply
jcech344 | @jcech344 | May 2, 2023
In reply to @tlehman "Thanks, John, for that info and those links. My daughter had suggested to me the idea..." + (show)
@tlehman

Thanks, John, for that info and those links. My daughter had suggested to me the idea of expectations and whether they are realistic. I’m working through that. Your suggestion of a list of accommodation is excellent too. Beyond what I’ve been doing for a long time to accommodate my dependence on hearing aids, what do you see as accommodations I’d need to make for a CI?

One of the great benefits of a good forum like this is not only getting some answers and resources, but getting help asking the right questions. Thanks for your help with both.

Tom

Jump to this post

Tom

Since I am also considering a CI I can't tell you from personal experience. The CI help site may be a very good resource for this question. I have only recently discovered it.

Among things I am aware of are an involved training period to learn what the new sounds mean, mri cautions (model specific), sleep accommodations on the CI side, Sports considerations (hats, impact, etc).

Ask people in the forums. Good luck.
John

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1 reply
Tom Lehman | @tlehman | May 2, 2023
In reply to @jcech344 "Tom Since I am also considering a CI I can't tell you from personal experience. The..." + (show)
@jcech344

Tom

Since I am also considering a CI I can't tell you from personal experience. The CI help site may be a very good resource for this question. I have only recently discovered it.

Among things I am aware of are an involved training period to learn what the new sounds mean, mri cautions (model specific), sleep accommodations on the CI side, Sports considerations (hats, impact, etc).

Ask people in the forums. Good luck.
John

Jump to this post

I heard about the MRI issue. From my reading, both Cochlear and A/B are MRI compatible. I’m guessing MedEl is as well. I can check their literature when I get back from this trip.

As I noted in my original post, the adjustment / relearning period is an issue for me. I’ve gotten several referrals from Cochlear and my local audiologist and this is something I bring up with each of them. What I’ve found so far is that it seems to vary a lot from person to person. One impression I’ve gotten is that it may be an easier process for those who are bimodal versus having to rely entirely on the implant. That is the aided ear sounds that same as before providing a kind of reference point to learn the new sounds from the CI.

No personal experience there yet either! Interested in thoughts about that from others here who are bimodal.

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Mentor
Julie, Volunteer Mentor | @julieo4 | May 2, 2023
In reply to @tlehman "Thanks for that info. I’m glad to hear they are incorporated in the CIs even if..." + (show)
@tlehman

Thanks for that info. I’m glad to hear they are incorporated in the CIs even if I don’t use them much. I must have misunderstood what someone else here said or wrote.

Maybe I’ve been avoiding some spots where I could use it. Now that you mention it, when I lived in DC we went to a play and they did have a loop and I could listen via the telecoil. I’d totally forgotten that. Top of my list now is to check local venues. Great nudge. I will also check the site you’ve provided. Thank you!

It is amazing how fast things develop, isn’t it.

Auracast is I think what I’d heard about. Do you know much about that? It sounded quite promising. I thought that would use other tech than telecoil. Is that correct?

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You are welcome. I live in Wisconsin. We have many loop installations in the state. That happened because we have advocated and educated to get them installed. It's such an easy way to connect!

Auracast is going to be interesting. It's based on artificial intelligence. There seem to be some 'bugs' in development. Yes, it could possibly diminish the value of telecoils. And possibly BlueTooth. Tech advancement will continue to change things. For the most part, we who have hearing loss want to hear. Now, not a decade from now. So, using what's available now to its fullest makes sense.

I may have said this earlier, but will repeat. I use my telecoils (hearing aid and cochlear implant) with several different audio devices. (Laptop, smartphone, radio, Kindle, etc.) A simply neckloop makes that possible. But I especially love being able to hear in large venues.

If you go to http://www.hearingloop.org be sure to find the link that will tell you where loops can be found in your area.

Having lived in Washington D.C., are you familiar with HLAA? (The Hearing Loss Assn. of America, Inc.) It's based in the D.C. area.

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jcech344 | @jcech344 | May 3, 2023
In reply to @beryl2 "It is good to hear that CI centers are not pushing CIs for people indiscriminately like..." + (show)
@beryl2

It is good to hear that CI centers are not pushing CIs for people indiscriminately like cataract surgeons I find do! My audiologist gets rave reviews on the local Checkbook as being patient and not upselling but doesn’t talk about assistive technology much at all. She did mention the Captel captioned landline (not a big cell phone user at all) and they are a lifeline for me in communicating with (nowadays typically foreign accented) customer service people.
There is an audiologist I have heard of nearby who hires students as interns from Gallaudet to help her patients at their homes with assistive technology and although I heard her at an HLAA talk mention she charges $1500 on top of the HA typical (if there is one) cost for this I think I should change to her and exhaust assistive technologies before looking into CIs at my age (although hearing aside in good health). Tom and others on MCC I am so appreciative of your contributions!

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For cell phone users there is a terrific service called innoCaption. It is free and federally funded I believe. After you sign up, you are given a cell number to use. There is no cost to use that number and when you dial out all the receiver's comments are captioned on your phone.

You can call forward as well so that all incoming calls are routed through the captioned cell.

I have found it extremely valuable in important calls.

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1 reply
beryl2 | @beryl2 | May 4, 2023
In reply to @jcech344 "For cell phone users there is a terrific service called innoCaption. It is free and federally..." + (show)
@jcech344

For cell phone users there is a terrific service called innoCaption. It is free and federally funded I believe. After you sign up, you are given a cell number to use. There is no cost to use that number and when you dial out all the receiver's comments are captioned on your phone.

You can call forward as well so that all incoming calls are routed through the captioned cell.

I have found it extremely valuable in important calls.

Jump to this post

Yes I have installed it but rarely use my cell phone. Anything important comes to the landline.

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Jeffrey Stevens | @jeff1132 | May 4, 2023

Hello! A friend showed me this group today and I read some (but not all) of the posts. I have an AB implant I got back in 1999, which means I am well past end-of-life for this. But, it's still working great! My current problem will be finding compatible external hardware pieces since they don't make my model anymore.

I will say getting the CI really improved my life, and especially my ability to work at my job.

REPLY
1 reply
Mentor
Julie, Volunteer Mentor | @julieo4 | May 7, 2023
In reply to @jeff1132 "Hello! A friend showed me this group today and I read some (but not all) of..." + (show)
@jeff1132

Hello! A friend showed me this group today and I read some (but not all) of the posts. I have an AB implant I got back in 1999, which means I am well past end-of-life for this. But, it's still working great! My current problem will be finding compatible external hardware pieces since they don't make my model anymore.

I will say getting the CI really improved my life, and especially my ability to work at my job.

Jump to this post

@jeff1132 Your implant was done in 1999. I don't know much about AB, but aren't the newer processors designed to work with your original implant?

How many processor upgrades have you had for your AB implant?

REPLY
Jeffrey Stevens | @jeff1132 | May 8, 2023

I've had one processor upgrade since the original. The newer models are not backwards compatible with my implant (1.2). I think there has been at least 2 generations after mine (C2 and HiRes90K). If my BTE ever breaks, I would have to revert to a body-worn processor for compatibility.

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bushbo | @bushbo | May 16, 2023

Auditory training takes quite a bit of effort. Some apps make it easier, but there is no substitution for just grinding away. I found the best way is to use content that you enjoy hearing, like audiobooks. To benchmark where you are, use a test. I have an app called Auribus which has some free tests that allow you to track where you are at word recognition.

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