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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.

spacecadet42 | @spacecadet42 | Aug 6 3:33pm

I don't have any answers for you, but I have the same question so I'm commenting so I will be notified of future answers. I was intrigued by the claims from the one vendor both about electrode length and how the programming is done. Also a small study that was done with people who had one brand of implant in one ear and the another brand in the other. You can ask your representative about that.

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1 reply
beryl2 | @beryl2 | Aug 7 9:37am

Tom
Maybe you have had your CI by now so I and likely many others would very much like to know how it has been. I am older than you (84) and my word recognition in my worst ear is in the 40s so I think I would be eligible for a CI but like you have/had am ambivalent about taking the plunge. I am surprised there were no replies to your post in 2023 by those who have gone through the decision process.

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Mentor
Julie, Volunteer Mentor | @julieo4 | Aug 7 1:45pm

@jimsmith12 I hope the aural rehabilitation you have done with your CI has helped. How are things 3 months later? I found the 'robot stage' had disappeared after 4 months.

How are you doing?

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Mentor
Julie, Volunteer Mentor | @julieo4 | Aug 7 1:47pm
In reply to @spacecadet42 "I don't have any answers for you, but I have the same question so I'm commenting..." + (show)
@spacecadet42

I don't have any answers for you, but I have the same question so I'm commenting so I will be notified of future answers. I was intrigued by the claims from the one vendor both about electrode length and how the programming is done. Also a small study that was done with people who had one brand of implant in one ear and the another brand in the other. You can ask your representative about that.

Jump to this post

@spacecadet42 Interesting. Do you have access to that small study related to CIs differing by brand in the same recipient?

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samarksusa | @samarksusa | Aug 8 8:31am

Have mine now for about 6 months. Love it. Has been a life changing experience for me. Surgery went well and implant working as promised.
Only bad thing is I can’t wear a hat as implant is in the way😩

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1 reply
Mentor
Julie, Volunteer Mentor | @julieo4 | Aug 8 12:13pm
In reply to @samarksusa "Have mine now for about 6 months. Love it. Has been a life changing experience for..." + (show)
@samarksusa

Have mine now for about 6 months. Love it. Has been a life changing experience for me. Surgery went well and implant working as promised.
Only bad thing is I can’t wear a hat as implant is in the way😩

Jump to this post

So glad your CI is working as promised. I love that it's 'life changing'! Mine is too!
Have you tried a few different styles of hat?

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1 reply
samarksusa | @samarksusa | Aug 8 1:13pm
In reply to @julieo4 "So glad your CI is working as promised. I love that it's 'life changing'! Mine is..." + (show)
@julieo4

So glad your CI is working as promised. I love that it's 'life changing'! Mine is too!
Have you tried a few different styles of hat?

Jump to this post

I like baseball hats but need to check others out. I do have one I bought in Ireland that works well!

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rhondellah2151 | @rhondellah2151 | Aug 20 1:30pm

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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3 replies
justtodd | @justtodd | Aug 22 2:14pm
In reply to @rhondellah2151 "I am a 73 year old woman who has experienced decreased hearing over the past 25..." + (show)
@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

Jump to this post

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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1 reply
Mentor
Julie, Volunteer Mentor | @julieo4 | Aug 22 3:47pm
In reply to @rhondellah2151 "I am a 73 year old woman who has experienced decreased hearing over the past 25..." + (show)
@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

Jump to this post

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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