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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.

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rhondellah2151 | @rhondellah2151 | Aug 22, 2024
In reply to @justtodd "Hello, RW. I will speak of my experience with HAs only, as I don't have CIs...." + (show)
Profile picture for justtodd @justtodd

Hello, RW.

I will speak of my experience with HAs only, as I don't have CIs. I am in a very similar situation and have the same HAs that you described as well as severe to profound hearing loss >1kHz. Noisy environments are impossible for me as well, along with every other HA user that I know. There are some here that tell of the positive experiences with a remote microphone, but I only use a TV connector which is wonderful. If the remote mic performs like that, I would say the you should try a Roger mic. Not cheap though. Not sure if a CI would help, but my Audi didn't want to go the CI route since my hearing < 1kHz is not as affected and I would lose that. Perhaps a second Audi opinion would help your decision?

Vanity... My Audi asked what style of HA I wanted. I replied with the question: What would work best for my hearing loss? She replied "BTE/RIC", immediately. I was to the point that I couldn't function with my hearing loss and just wanted what worked. It's a game changer... except in noisy environments.

Dating... If you're truly seeking the person you say that you are, a visible CI won't matter to them anyway. Perhaps it may help to weed out the shallow ones...

JustTodd

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Thanks. Appreciated. You are right. Why would I want someone who can't understand that I need to do what will best help me.

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rhondellah2151 | @rhondellah2151 | Aug 22, 2024
In reply to @julieo4 "You might find a great deal of support if you could/would get involved in an HLAA..." + (show)
Profile picture for Julie, Volunteer Mentor @julieo4

You might find a great deal of support if you could/would get involved in an HLAA Chapter.

Most HLAA folks are people who have experienced adult-onset hearing loss. Many are retired. I know many who have met a future significant other through involvement in HLAA. These people all understand the struggles we have in noisy settings. They look at hearing aids and cochlear implants as helpful technology. They feel good about helping themselves. They don't care if it shows to use it.

I struggled with personal issues about my hearing loss until I became involved in HLAA. For me that was a long time ago. I've been reaching out to others for decades now because that organization gave me my life back. http://www.hearingloss.org Look for 'chapters'.

It does mean going public about your unique needs. Are you willing to do that?

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Julie,
Thanks. There is a HLAA group near me. They meet monthly on zoom and feature speakers but I will explore what is available in support groups. I think the only sane approach is, embrace it, move forward, grow.
With appreciatio,
RW

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Mentor
Julie, Volunteer Mentor | @julieo4 | Aug 22, 2024
In reply to @rhondellah2151 "Julie, Thanks. There is a HLAA group near me. They meet monthly on zoom and feature..." + (show)
Profile picture for rhondellah2151 @rhondellah2151

Julie,
Thanks. There is a HLAA group near me. They meet monthly on zoom and feature speakers but I will explore what is available in support groups. I think the only sane approach is, embrace it, move forward, grow.
With appreciatio,
RW

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I hope you can find support through HLAA. Many chapters started meeting on Zoom when Covid hit. Most have gone back to in person meetings, but not all. My chapter does hybrid meetings so are in person and also on Zoom. Technology is pretty fascinating.

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arieswoman | @arieswoman | Aug 25, 2024
In reply to @rhondellah2151 "I am a 73 year old woman who has experienced decreased hearing over the past 25..." + (show)
Profile picture for rhondellah2151 @rhondellah2151

I am a 73 year old woman who has experienced decreased hearing over the past 25 years. My right ear is 30dB/44% with less that 60% speech recognition, and my left ear is 25dB with speech recognition less than 40%. I have severe high frequency loss. I currently wear Phonak 90 hearing aids in both ears and can hear well enough with the hearing aids in a quiet room with someone in close proximity, but really struggle when there is any kind of background noise, which means most everywhere else, and of course noisy restaurants or crowded rooms are impossible. My audiologist recommends a CI on my left ear, while trying to preserve my low frequency hearing. I have heard the CI is not that effective in noisy environments.
I am embarassed to say, that my vanity is right now preventing me from moving forward. I am currently a single woman, who is is still somewhat dating. I know this sounds immature on my part, and of course I want someone who will love me because of who I am and not how I look, but, in the real world, I cannot but think that this may be somewhat of an inpediment to ever getting there. Yes, I feel like a silly teenager, and I do believe everything is attitude, and I should just embrace it, but is anyone else struggling with similar issues?
Many thanks,
RW

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I am 85 and had my CI implant done in 2022. I have no regrets. I have only had one person see my equipment and stopped me to ask questions about it as he was looking into it. I have short hair and do comb some hair over it but if not so what? I have difficulty in noisy environments and the Rogers mic does help somewhat. I also have a tv connector that Bluetooths the tv right into my hearing aids. My Phonak hearing aid is compatible with my AB Bionic CI. I find my hearing is better in the first part of the day. By evening it's not so good. My audiologist told me it was audio exhaustion of all things. I usually take my hearing aids out in the evening after the news and read until bedtime. I live alone so it's not been a problem. My friends and neighbors know that I do this and I have only had one person knock at my door and she didn't know. I saw my Ring doorbell because it flashes the lights on my Ipad.

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2abbygail | @2abbygail | Sep 23 10:33am

Hi to all...I am also new to this forum. I am so happy to be able to read about your personal experiences whether you have or are considering getting a cochlear implant. I have only 10% hearing in my left ear and have reduced, but acceptable hearing in my right ear. I wear Phonak bicros hearing aids. I also have 24/7 tinnitus in my left ear. The constant sound is very difficult and nothing masks it. The noise I hear is mid range and sounds like an car or truck engine or an airplane overhead. I'm considering getting a cochlear implant and have an appointment at MEEI in early February to assess if a CI for my left ear makes sense. My reason for a CI is two fold: improve my hearing and also to reduce my tinnitus. Did anyone in the group have tinnitus who also went ahead to get a CI?
If so, was your tinnitus reduced or even better, eliminated?

Thank you all. I appreciate everything you've shared.
Gail

PS - I'm sorry if I'm posting incorrectly as this is more than a comment to Tom.

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fever1 | @fever1 | Sep 24 12:16pm
In reply to @2abbygail "Hi to all...I am also new to this forum. I am so happy to be able..." + (show)
Profile picture for 2abbygail @2abbygail

Hi to all...I am also new to this forum. I am so happy to be able to read about your personal experiences whether you have or are considering getting a cochlear implant. I have only 10% hearing in my left ear and have reduced, but acceptable hearing in my right ear. I wear Phonak bicros hearing aids. I also have 24/7 tinnitus in my left ear. The constant sound is very difficult and nothing masks it. The noise I hear is mid range and sounds like an car or truck engine or an airplane overhead. I'm considering getting a cochlear implant and have an appointment at MEEI in early February to assess if a CI for my left ear makes sense. My reason for a CI is two fold: improve my hearing and also to reduce my tinnitus. Did anyone in the group have tinnitus who also went ahead to get a CI?
If so, was your tinnitus reduced or even better, eliminated?

Thank you all. I appreciate everything you've shared.
Gail

PS - I'm sorry if I'm posting incorrectly as this is more than a comment to Tom.

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I have read it doesn’t help tinnitus much. They have been known to be wrong. Keep tv on appropriate level home. Sound devices etc. Stay well.

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daveshaw | @daveshaw | Sep 25 9:14am

Much like Tom I am 74 and could be faced with eventually getting CI’s. My audiologist does not think I would meet the criteria just yet.
Obviously I would like it if it was less noticeable but my biggest fear is having a CI and having to learn to hear again at my age. My second fear is losing any residual hearing. They are actually doing human trials hopefully this year to regrow hair cells. If they are successful would I miss out because I already had CI’s.
Most interested in experiences people have had with learning to hear again. I have been told it can take 6-12 months and perhaps longer. Worst case scenario your brain can’t make the transition.
I welcome all comments and look forward to hearing from people on this site. I value all your stories.

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suesue22 | @suesue22 | Sep 25 10:11am

Julie hi how do you find out about the zoom meetings and how can you get in. I have been in before but only through Ava so I nknow that you need a number or password.

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Mentor
Julie, Volunteer Mentor | @julieo4 | Sep 26 9:37pm
In reply to @suesue22 "Julie hi how do you find out about the zoom meetings and how can you get..." + (show)
Profile picture for suesue22 @suesue22

Julie hi how do you find out about the zoom meetings and how can you get in. I have been in before but only through Ava so I nknow that you need a number or password.

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@suesue22 Hi There. I've responded to a lot of messages and am unsure of which Zoom meetings you are asking about. In most Zoom meetings you need a password to get in or to register in advance.

Whomever is managing the Zoom meeting can send you that link on request.

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Profile picture for Julie, Volunteer Mentor
Mentor
Julie, Volunteer Mentor | @julieo4 | Sep 26 9:56pm
In reply to @daveshaw "Much like Tom I am 74 and could be faced with eventually getting CI’s. My audiologist..." + (show)
Profile picture for daveshaw @daveshaw

Much like Tom I am 74 and could be faced with eventually getting CI’s. My audiologist does not think I would meet the criteria just yet.
Obviously I would like it if it was less noticeable but my biggest fear is having a CI and having to learn to hear again at my age. My second fear is losing any residual hearing. They are actually doing human trials hopefully this year to regrow hair cells. If they are successful would I miss out because I already had CI’s.
Most interested in experiences people have had with learning to hear again. I have been told it can take 6-12 months and perhaps longer. Worst case scenario your brain can’t make the transition.
I welcome all comments and look forward to hearing from people on this site. I value all your stories.

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@daveshaw & Others,

When I decided to go the cochlear implant route I was using a bicross hearing aid that was only broadcasting sound to one side. I had originally, years before, been fitted with only one hearing aid, so one of my ears had been deprived of hearing with amplification for years. Initially they tested the same, but back then...in the 70s, they weren't pushing hearing aids in pairs.

An audiologist friend of mine I knew through my involvement in HLAA, suggested I get fit with a hearing aid in the 'bad ear'. He suggested I listen to audio books by using a neckloop with the telecoil in that hearing aid. At first I wasn't able to discriminate the speech I was hearing, but it didn't take long for my brain to start picking up words. Within a month I was able to understand the audio books quite well with only that 'bad ear' and the technology. (I didn't use the other hearing aid with the audio books.) I did that for a full year before having CI surgery. I had the surgery on that 'bad' ear. Within a month I was hearing speech quite well, and it improved greatly over 6 months. It was, and has been amazing.

My CI surgeon wanted to do the CI on the ear that had been aided for years. I chose to do the ear I was rehabbing. I have no regrets. Today I am a bimodal user of both a CI and a hearing aid. My brain has adapted to needing both technologies to hear best.

That is my story. It differs from others. My only regret is that I waited so long to get the CI...and that was 20 years ago!

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