Anyone Else Profoundly Deaf in One Ear for 38 Years and Have Success with a Cochlear Implant?

Hi everyone!! It’s nice to “meet” you all. This past week, my ENT seems to think a cochlear implant will be a viable option for my left ear. To make a long story short, I’ll get right to the background of my hearing loss, then discuss what happened this week. I’m proceeding on this with an abundance of caution, for reasons which are explained more throughout this post.

First of all, my background. I was born hearing and started talking very early. At around age 3 (I am 41 now) I lost a lot of hearing and became profoundly deaf in my left ear, and moderate > severe hearing loss in my right ear. It was diagnosed at the time as sensorineural hearing loss. No one knows 100% what caused it. A comprehensive battery of tests could not determine the cause, and tests for meningitis were inconclusive (they did that test because I did have an illness around age 3 where I had a fever of 105). I also had around 3 accidental head injuries around that time frame.

The way it happened was, I was able to speak clearly and perfectly as a child then one day, instead of saying “letter, letter, letter” I started saying “luttur, luttur, luttur,” sending my mom into a panic. Lo and behold I was diagnosed with profound sensorineural hearing loss in my left ear, and moderate to severe in my right.

I don’t sign and I am (mostly) fully normal speaking-wise. Have never had to learn to sign. I have used hearing aids since age 3 with success, starting with analogues. I never could get used to digital hearing aids but continue to wear them because they do provide significant benefit. I always feel like understanding with them are just out of reach, even though I have the understanding, even with optimal volume settings, MPO settings, and everything. It generally feels like the signal is too soft.

I am highly technical with my audiologist and able to tune my aids with accurate feedback to get the results I need. I use a Phonak wireless CROS unit on my left ear with a Phonak NAIDA B90 on my right. The CROS provides the additional volume to my right ear where the single aid is now insufficient.

Anyway. This week has been somewhat of a whirlwind. My ENT suggested that a cochlear implant could be viable for my left ear. First time he has ever suggested it.

I have normally not considered cochlear implants due to the fact that I was always told the sound would be too crude and would interfere with my right ear’s hearing aid. My ENT (who I have been going to regularly for the past 30 years) believes that I could eventually experience hearing that is better than my aided ear (after training, rehab, mappings, etc.).

My audiologist is more conservative and seems to believe that my left ear’s lack of stimulation for 39 years is a significant factor and could interfere with the hearing in my right ear as a result. We also don’t know exactly what caused my hearing loss, either. So that is a big question that will probably never be answered. I know that CIs have, generally, a 94-95% effectiveness rate. And that approximately 5%, even after potential viability testing, never see any benefit as a result.

So, I am going to begin the process of being referred to be evaluated by a CI specialist to see exactly how viable it could be (if at all).

Anyway. I have since been doing non-stop research on the current state of CIs and I am proceeding with an abundance of caution. An abundance of caution meaning, if the CI specialist determines I may not be a viable candidate, or has concerns, I won’t do the surgery.

But, there does appear to be very promising results from people who have been profoundly deaf for 20 years without any stimulation whatsoever. I imagine that there’s not much difference between one who hasn’t been stimulated for 20 years vs. one who hasn’t been stimulated for 38 years, the result is the same - zero hearing in the profoundly deaf ear where hearing aids do not help. Anyway. I’m beginning to believe that remarkable results are being achieved as a result of brain plasticity and how it adjusts to the mappings rather than stimulation, based on everything I have read thus far.

Sorry about the ramble. You can see my audiogram attached to this post. The red line was added digitally to more easily illustrate the loss. It shows my right ear thresholds (red line) and my left ear thresholds (below that).

audiogram

Welcome to the forum.

I do not know the answer to your question about getting hearing back with a CI. I do recommend getting a CI evaluation to find out if you are medically able to have a CI. You sound like you are very mentally able.

Everyone is different about hearing, hearing aids and cochlear implants. Some do better than others.
I am not in your shoes but if I was you and given the go ahead for a CI I would jump on it.

Have you done much reading about CI on this forum? Most but not all have done really well with CI. You are young and have so much in front of you.

Welcome to the forum…

I was in a similar situation as you are. My L ear is profoundly deaf and has been all my life. For me it’s congenital and that’s 70+ yrs now.

When I was assessed I wanted my L ear but my surgeon decided to do my right ear instead as it had only been profound for 3 years at the time of my operation. For which I’m eternally grateful, as I now have 94% WRS aided binaural hearing. I don’t regret my decision to have a CI at all. It’s been a journey of discovery all the way.

Be guided by your surgeon, let him/her decide which ear to do, and see where it leads you. Good luck with your assessment and journey back to hearing again…

Thank you very much for your reply, @Raudrive!! I have been reading everything I can get my hands on about Cochlear Implants, this forum, and including recent studies. The recent studies are interesting, showing that they can be effective for people like me who were previously not considered CI candidates. I am still keeping my expectations low in case it turns out the CI specialist instead wants to do my other ear. I have enough hearing in my good ear but my ENT seemed pretty confident with the speculative possibility (and he did say it was speculative) that I could eventually have hearing in my left ear that’s better than my good ear, despite its long-term deafness. Well, we will see what they say. Fingers crossed!

@Deaf_piper - Thank you for the warm welcome. I have been reading your thread with great interest. Congratulations on the 94% WRS!! That is outstanding coming from a profound level of hearing loss. I will take your advice and I will make sure to allow the surgeon to provide his professional guidance. And I will keep an eye on your progress as well.

1 Like

IMO (I’m not an audiologist) just having another look at your audiogram, I’m guessing that both your ears will be eligible for a CI. Generally speaking (but not always) once you have laid down new sound pathways for one ear, you find the other ear a lot easier to understand speech.

Rehab it’s hard to find the time to commit to hours of rehab every day. I’m retired and did 2 hours every day, until my final assessment. But if you want to get a good result it’s a must…

1 Like

This may have been the case for me as well.

My first implant took a couple weeks for me to understand anything. Then over the next few months speech understanding got better and better. And even now 9 months later speech understanding continues to improve.

My second implant I understood speech at activation. Sounded a little like cartoon characters but I could understand practically every word spoken at activation.

Each of us have different ways to learn. For me it was just putting myself into a position to hear speech and read what was being said. Another way was watching movies or TV shows I was familiar with using closed captioning. These things really helped me relearn speech.

3 Likes

Very interesting from both of you, @Deaf_piper and @Raudrive. I am in the situation where I can commit all day to listening if need be, due to working remotely. I know that’s not optimal, and that listening for 2-3 hours then taking a break is best. Last thing I need is to be fatigued during work hours!

And, very encouraging. Reading the latest studies, especially those with prolonged profound deafness it sounds like the overall lifetime exposure to quality sound in the remaining ear is most important, and that the deaf implanted ear is immaterial in terms of how successful one is with a CI.

Very interesting indeed. I’ll be working out some details to see a CI specialist and see what can happen. Still proceeding with extreme caution. If my CI specialist has any concerns I will weigh them heavily. But so far, like my ENT said, it sounds like something that could help me significantly.

1 Like