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).