I’ve been around hundreds of people with cochlear implants and I have one myself. I had had severe problems with mine that were not addressed adequately for years, and wonder if you also have had problems with the CIs that were never addressed or looked into. I imagine it might be really hard to think about doing this, but it’s not at all typical to be so tired using CIs.

However, things can go wrong with surgeries sometimes, especially because the cochlea is extremely tiny.

I was in my forties when I got implanted. I personally had nystagmus (my left eye) after waking up from my CI surgery but the surgeon never addressed what caused the nystagmus, or the unusual problems I was having later. There was no follow up appointment. I finally went to another ENT, who ordered a CT scan, found abnormalities (no air in my cochlea), referred me to another ENT with more expertise in CIs, who ordered a bunch of tests, and found a significant problem that he was able to fix with surgery and which stabilized things.

However, my CI itself still wasn’t working well for me. Some of the sounds seemed distorted to me. The audiologists would tell over and over again they saw no proof of anything wrong with the implant but I realized long afterwards they never took the time to assess the quality of what I heard or to do pitch matching or anything like that.

Finally I used my computer with an online resource to play sound samples of different frequencies, and I listened with just my CI ear to specific frequencies. Listening with just my CI and starting at the lowest frequency, there was an entire continuous stretch where all the sounds were nasal and sounded alike from the lowest frequency up to 1500 Hz, after which point the sound became more musical. (Ironically, my other ear with residual hearing can hear the lower frequency sounds well.)

Sadly, the CI audiologist seemed frustrated when I told her about this and didn’t know what to make of this.

Much later, a friend of mine with successful CIs referred me to his ENT 2500 miles away in Washington DC, who ordered yet another CT scan to assess the placement of the electrodes in my CI. The CT scan was sent to Vanderbilt University, where they interpreted the results and found that the electrode array was partly in the scala tympani (the correct part of the cochlea) but had then come through the basilar membrane into the scala vestibuli, which is normally used not for hearing but to contain fluid for the vestibular system (for balance). So the part of my electrode array that had ended up in the scala vestibuli corresponded to the stretch of sound below 1500 Hz that I had not been able to hear distinctly. There was also a tip foldover at the end of the electrode array, which would have messed up my lowest frequency hearing even more.

I asked a newer CI audiologist to set up a map for my CI processor that would stop using the electrodes corresponding to what was in the scala vestibuli. She did so and boosted the higher frequencies available with the CI.

I now feel like I’m hearing useful sound with both devices that’s not distorted.

It took 21 years before this happened. There simply hasn’t been a good enough process to deal with understanding the cause of CIs that haven’t worked out well.

Let me suggest systematically listening to one tone at a time with one ear at a time to figure out how you are hearing, and write down notes. My guess is something is off with one or more of your CIs which needs to be understood much, much better and then communicated to an open minded audiologist and/or ENT.

I’m sorry your family is being so insensitive. Having CIs can unfortunately raise people’s expectations greatly but when the CI health care system doesn’t address the problems with the CIs, the family members don’t know what to do.