I started researching cochlear implants (CI) a few years ago. Research has always been important to me and helped me make health decisions. I’ve been ‘involved’ with the medical community since I was diagnosed with Glomerulonephritis (from a strep infection I had as a child). After that diagnosis, I went to the nearest medical school library and dug through anything I could read about the disease. From that point I have become an extremely well informed ‘patient’.
Initially, I wanted to know what people with CIs said about the experience. There are lots of online and YouTube stories told in the first person by CI recipients. I also talked to anyone who had a minute to share their story. Somewhere in that time, I stopped feeling that CIs are disfiguring. The stories folks told about learning to hear and how their brains somehow learned to translate the electrical stimulation in the cochlea into recognizable speech, are inspiring.
I looked at the dangers of the surgery. A certain small number of implants are not successful and I wanted to make sure I was not one of them. Since I needed to have two kidney transplants and faced the risks of those surgeries, the CI risks paled in comparison. One thing I learned is that the surgeon is super important. They need to have performed many many CIs building an impressive skill level. I found it important that the surgeon take pains to see me as a person, to know what I hope the CI will do for me.
I also looked at each of the provider companies. First at their longevity in the business, their financial stability, reputation and customer reviews. I also assessed the support the companies offer. Since I travel so much, I looked for a company that would work with me no matter where I am, should one of my processors have a problem. It’s important to me that if I need an adjustment, there will be a lot of audiologists around who have worked with my CI company and know the processors.
One of my favorite sites: https://www.fda.gov/medical-devices/cochlear-implants/benefits-and-risks-cochlear-implants takes a hard look at CI and gives information about what to expect. I went back to risks and recognized that some of my decisions to choose Cochlear Inc. addressed the very risks listed. For example: ‘won’t be able to swim or shower’ – I chose a waterproof case for my processor as one of my accessories. I haven’t trusted swimming for years, being so deaf I wouldn’t have known that someone needed me out of the pool or ocean. A
Dependence on batteries is another worry – well, right now I’m dependent on batteries for my HAs, I have them in all of our vehicles, in all of my backpacks and my purse, in the pockets of several outdoors jackets, in drawers in the front of the house and the back, it’s pretty funny. CI batteries are rechargeable. I decided I’d need two batteries so I would have a back up in case the one I’m using runs out.
The idea that I’ll have to use processors for the rest of my life isn’t disturbing because I wear HAs from wake up to sleep and have for years. There is no end in sight to that scenario, the only difference is that with the CI I have a chance of improved understanding and engagement with my world.
Upgrades can be another issue. I’m not worried about that because the company does upgrade processors and the current implant is going to be effective for a long time yet – or so I have been assured. The technology of external components is constantly moving to more fleet, flexible and smaller components (same as computers).
Another big concern for me was that at some point I may need an MRI – the implant I’ve chosen is one that is technologically capable of being in MRI. I learned the protocol for how to deal with MRI and have everything about that in a file just in case I need it.
Armed with tons of information and the stories and experiences of CI recipients, my confidence about succeeding at the CI process soared!