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.

Mentor
Julie, Volunteer Mentor | @julieo4 | May 1, 2023
In reply to @beryl2 "Tom I am 83 and am at about the same stage of hearing to you although..." + (show)
@beryl2

Tom I am 83 and am at about the same stage of hearing to you although my worst ear word recognition is in the 40%s.
I have had my Phonak Audeo hearing aids for over 3 years now and am wondering how you are doing with your new up to date ones. I likely am a candidate for a C1 but have the same reasons for hesitation as you but hate to spend the $$$ needed for the new aids if I have reached the limit of what hearing aids can do.

Jump to this post

You say you are a 'likely' candidate for a Cochlear Implant.

Have you been to a cochlear implant center for evaluation?

REPLY
1 reply
Mentor
Julie, Volunteer Mentor | @julieo4 | May 1, 2023
In reply to @tlehman "Hi Barbara I tried new Phonak aids for about a week. I heard mid-range sounds more..." + (show)
@tlehman

Hi Barbara

I tried new Phonak aids for about a week. I heard mid-range sounds more than I do with my older Phonak aids, but I’m not sure it changed my overall speech recognition enough to carry me forward. I’m trying to arrange to try ReSound aids as that’s what I’d have if I do the Cochlear implant. These are loaner aids from my local audiologist. I may decide to invest some dollars to order new aids so I can try them for 4-6 weeks.

You should be able to try new aids for $ expense before you expend $$$$ to actually buy them. With my longtime audiologist where I used to live, the investment would have been just the cost of new molds. My current audiologist works in a smaller setting and they charge an additional $500 if you decide to return the aids. I actually don’t think that’s unreasonable given the time she’ll spend with me to set them up and tweak them along the way.

I forgot to mention that I really liked the phone app that I could use to control those new Phonak hearing aids. I still had program control on the aids themselves, but I could make real-time adjustments through the app. For example I was in a fairly noisy restaurant and was able to experiment with increasing and decreasing the level of noise reduction to find a good sweet spot for that particular situation. I liked that level of control that used to be only available via programming by the audiologist. Maybe today all the aids have this.

Jump to this post

Assistive technology that goes beyond hearing aids and cochlear implant processors can make a huge difference in noisy settings. Yet, many people don't know it's available. Having a telecoil component in the hearing aid is a must. Most aids for severe hearing loss have telecoils, but often they are not activated by the provider. If you don't know about they you don't know you might benefit from them.

Do you ever use any of the add on technologies with your hearing aids? DId your provider explain them to you and also let you try them?

Have you used a hearing loop, FM system or Infrared system in a public place with your hearing aids, and not a provided receiver?

REPLY
1 reply
Tom Lehman | @tlehman | May 1, 2023
In reply to @julieo4 "Assistive technology that goes beyond hearing aids and cochlear implant processors can make a huge difference..." + (show)
@julieo4

Assistive technology that goes beyond hearing aids and cochlear implant processors can make a huge difference in noisy settings. Yet, many people don't know it's available. Having a telecoil component in the hearing aid is a must. Most aids for severe hearing loss have telecoils, but often they are not activated by the provider. If you don't know about they you don't know you might benefit from them.

Do you ever use any of the add on technologies with your hearing aids? DId your provider explain them to you and also let you try them?

Have you used a hearing loop, FM system or Infrared system in a public place with your hearing aids, and not a provided receiver?

Jump to this post

Thanks, Julie. Yes I’m aware of those techs. I have had telecoils for at least 20 years but I can count on one hand the number of times I’ve used it. Cell phones and Bluetooth have replaced those old phones and I find few places have loop systems, at least places I go.

I’m told a new longer range Bluetooth system is coming that will make it easier and cheaper for venues to install.

The biggest change for me came quite a few years ago with the first iCom Bluetooth neckloop for Phonak aids. I’m now on ComPilot II. Phone calls are pretty easy and I can stream music, tv, videos, etc. Of course now Bluetooth is built into the aids and CIs.

I’m told some / all CIs do not have telecoil. I think LE Bluetooth and a form of wifi may make telecoils unnecessary. I’d be interested in how others feel about that.

I also have a Phonak cordless phone that connects to my hearing aids if I hold near them. I used that quite a bit a number of years ago but now just use the ComPilot.

I have not tried the microphones that you give to the other person as I am generally able to converse even in somewhat noisy spaces. My providers have always introduced various technologies and I’d hate to think others do not.

Thanks for the thoughts.

Tom

REPLY
1 reply
Tom Lehman | @tlehman | May 1, 2023
In reply to @julieo4 "You say you are a 'likely' candidate for a Cochlear Implant. Have you been to a..." + (show)
@julieo4

You say you are a 'likely' candidate for a Cochlear Implant.

Have you been to a cochlear implant center for evaluation?

Jump to this post

I know this was directed to Barbara but wanted to comment. There has been what seems to be an explosion of centers doing implants now. The criteria each uses though may differ. One group that I know quite well has been doing implants for only about two years and focuses almost entirely on those who have lost all or nearly all their hearing. They looked at my charts and said they would not implant me. Mayo with much more experience treating a wider range says I’m a good candidate. My local audiologist who has been doing implants with kids for many years agrees that I’m a good candidate.

Just saying “likely candidate” can vary by provider.

REPLY
1 reply
Mentor
Julie, Volunteer Mentor | @julieo4 | May 1, 2023
In reply to @tlehman "Thanks, Julie. Yes I’m aware of those techs. I have had telecoils for at least 20..." + (show)
@tlehman

Thanks, Julie. Yes I’m aware of those techs. I have had telecoils for at least 20 years but I can count on one hand the number of times I’ve used it. Cell phones and Bluetooth have replaced those old phones and I find few places have loop systems, at least places I go.

I’m told a new longer range Bluetooth system is coming that will make it easier and cheaper for venues to install.

The biggest change for me came quite a few years ago with the first iCom Bluetooth neckloop for Phonak aids. I’m now on ComPilot II. Phone calls are pretty easy and I can stream music, tv, videos, etc. Of course now Bluetooth is built into the aids and CIs.

I’m told some / all CIs do not have telecoil. I think LE Bluetooth and a form of wifi may make telecoils unnecessary. I’d be interested in how others feel about that.

I also have a Phonak cordless phone that connects to my hearing aids if I hold near them. I used that quite a bit a number of years ago but now just use the ComPilot.

I have not tried the microphones that you give to the other person as I am generally able to converse even in somewhat noisy spaces. My providers have always introduced various technologies and I’d hate to think others do not.

Thanks for the thoughts.

Tom

Jump to this post

Thank you for your thoughts Tom. I respectfully disagree with you on the telecoil issue. I've not used mine on the phone for a long time. but I sure find them terrific at the performing arts centers, at church and in numerous meeting spaces. Plus, they add zero cost to the price of a hearing aid or CI processor. The only CI processors that don't have telecoils are the off the ear models, but they can connect with a telecoil via the hand held Mini Mic 2+ BlueTooth is great too, but for different purposes. Auracast AI is going to be interesting. Good to know that your providers are on top of it all. Many are not.

We are fortunate to be living in times when technology is developing. When I was diagnosed with progressive sensorineural hearing loss back in the 60s I was told that nothing would ever be developed in my lifetime to help me. "Just learn to live with it" was the answer.

It's been a good ride to get involved in the national movement to make hearing loss an issue of concern. http://www.hearingloop.org has some terrific information if you're willing to explore it.

REPLY
1 reply
Mentor
Julie, Volunteer Mentor | @julieo4 | May 1, 2023
In reply to @tlehman "I know this was directed to Barbara but wanted to comment. There has been what seems..." + (show)
@tlehman

I know this was directed to Barbara but wanted to comment. There has been what seems to be an explosion of centers doing implants now. The criteria each uses though may differ. One group that I know quite well has been doing implants for only about two years and focuses almost entirely on those who have lost all or nearly all their hearing. They looked at my charts and said they would not implant me. Mayo with much more experience treating a wider range says I’m a good candidate. My local audiologist who has been doing implants with kids for many years agrees that I’m a good candidate.

Just saying “likely candidate” can vary by provider.

Jump to this post

Of course, it can vary. It pays to do some research and MCC is a good place to start. It helps a lot to talk to people who have similar experiences and who are willing to share their stories.

REPLY
1 reply
Tom Lehman | @tlehman | May 1, 2023
In reply to @julieo4 "Thank you for your thoughts Tom. I respectfully disagree with you on the telecoil issue. I've..." + (show)
@julieo4

Thank you for your thoughts Tom. I respectfully disagree with you on the telecoil issue. I've not used mine on the phone for a long time. but I sure find them terrific at the performing arts centers, at church and in numerous meeting spaces. Plus, they add zero cost to the price of a hearing aid or CI processor. The only CI processors that don't have telecoils are the off the ear models, but they can connect with a telecoil via the hand held Mini Mic 2+ BlueTooth is great too, but for different purposes. Auracast AI is going to be interesting. Good to know that your providers are on top of it all. Many are not.

We are fortunate to be living in times when technology is developing. When I was diagnosed with progressive sensorineural hearing loss back in the 60s I was told that nothing would ever be developed in my lifetime to help me. "Just learn to live with it" was the answer.

It's been a good ride to get involved in the national movement to make hearing loss an issue of concern. http://www.hearingloop.org has some terrific information if you're willing to explore it.

Jump to this post

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?

REPLY
1 reply
Tom Lehman | @tlehman | May 1, 2023
In reply to @julieo4 "Of course, it can vary. It pays to do some research and MCC is a good..." + (show)
@julieo4

Of course, it can vary. It pays to do some research and MCC is a good place to start. It helps a lot to talk to people who have similar experiences and who are willing to share their stories.

Jump to this post

Hope I communicated okay in my comment. I was surprised to learn that different centers had different criteria for who they considered to be good CI candidates. I went into this assuming there was less variance in that than turns out to be the case.

REPLY
1 reply
beryl2 | @beryl2 | May 1, 2023
In reply to @tlehman "Hope I communicated okay in my comment. I was surprised to learn that different centers had..." + (show)
@tlehman

Hope I communicated okay in my comment. I was surprised to learn that different centers had different criteria for who they considered to be good CI candidates. I went into this assuming there was less variance in that than turns out to be the case.

Jump to this post

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!

REPLY
1 reply
jcech344 | @jcech344 | May 2, 2023

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

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