Braille Monitor                          December 2019

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Cochlear Implant: A Brief Introduction and My Experience

by Chris Westbrook

Chris WestbrookFrom the Editor: Chris Westbrook is a member who lives in Pennsylvania and serves as the vice president of the Jigsaw Chapter, the at-large chapter in Pennsylvania. He works as a computer programmer, and I find him to be a most delightful person. Many of us who are blind rely heavily on our hearing, and in this article Chris talks about the struggle in deciding whether to get a cochlear implant and the results he has had with it. Here is what he says:

Before I share my cochlear implant journey, I’d like to say a few things. First, your experiences may vary. I am by no means holding myself up as the only or even most typical experience regarding cochlear implant surgery. Everyone’s experience is different and should be respected. Second, the journey is not over yet. I have been “activated” (meaning I have worn the cochlear implant) for almost three months. I expect things to keep getting better over time, so my story is far from over. Having said this, I think it is complete enough that I can provide some perspective on the surgery with some degree of clarity. Third, you may be wondering why I am sharing this in a blindness publication. You may think that this better belongs in a hearing impairment journal of some kind. My answer to this point is that the senses of blindness and hearing are not separable, but one sense feeds off the other. I believe there are experiences that I have as a blind person using a cochlear implant that a sighted person would not. I think it is good for all our members to be educated on how cochlear implantation works. You never know when you or a chapter member may need one. With that out of the way, let me start from the beginning.

I would like to first briefly describe what a cochlear implant is so that we are all on the same page. A cochlear implant assists someone with severe hearing loss in improving his/her hearing. In most cases, when a cochlear implant is placed, all natural hearing on the affected side is erased. It consists of two parts: an internal part that is placed during surgery, and an external part that you wear which connects to the internal part by a magnet under the skin and transmits the sound to the implant. I realize this may sound painful and uncomfortable; I can assure you it is neither.

While cochlear implant surgery is relatively minor outpatient surgery, it is still surgery. Because of this, and because of the drastic affect it will have on peoples’ hearing, there is a qualification process. Not everyone will qualify for a cochlear implant. Hearing tests are done, and your scores are calculated and discussed. Never get a cochlear implant just because a doctor or family member says you should. It is a big decision which should not be taken lightly. Once you get a cochlear implant, there is no going back so to speak. This is what kept me from getting a cochlear implant for a long time. I knew I didn’t have much hearing to lose, but I was not psychologically ready to part with what little natural hearing I had in that ear, even if it meant potentially better hearing down the road. Talk with your doctor. Talk with others who have gone through the process, blind or sighted. Also try to find those with similar hearing histories to yours if possible but know that everyone’s experiences may vary. I would say that overall, most people who are willing to put in the necessary work have had a positive outcome. If your hearing qualifies you for a cochlear implant and you would like to move forward, you will most likely have a CT scan to ensure that your anatomy will tolerate the surgery and implant. You will also have to choose a brand of implant. I won’t say much about that here, as all major brands are good. Which one you choose will depend on your lifestyle and which brands your surgeon/cochlear implant center is experienced with.

If all tests come back normal and you still wish to continue, you will be scheduled for surgery. This will be outpatient surgery, and you will most likely be home the same day unless there are complications. Some have reported dizziness and/or a loss of taste, but I didn’t experience either of these symptoms. The pain was very mild; I was prescribed opioids but took very little of them. I was back to work in a few days, once the bandages were removed. I was fortunate to have someone stay with me for a while. If you live alone, it might not be a bad idea to have someone stay with you for a week or so just to make sure everything is going well. After that, it is time for the incision to heal as you patiently await activation day.

Usually about a month after surgery, you will go back to your implant center to receive your external processor and have it turned on for the first time. This is usually called activation or activation day. While this day can be full of anticipation and excitement, it is best to not expect much the first day. Everyone’s experiences vary, but I was not able to understand speech at all for the first few days. Remember your brain is having to relearn how to hear. It is not like simply adding another hearing aid to the mix. It is a totally different way of hearing. This is where blindness can compound things and make things particularly challenging. We do not have the benefit of lip reading, for example. You will need to be patient with yourself, and others will need to be patient with you. You will be going through a process that is starting now and will last for some time. Now is not the time to plan that solo cross-country trip you’ve been dreaming of. Seriously, you may need more help than you would at other times, and that is OK. Be kind to yourself and give your brain time to adjust.

Plan to go back to your audiologist often, weekly at first, then gradually becoming less and less frequent. They will test you and adjust your implant as necessary. You will be told to listen to as much as possible with only the implant. This is hard at first, but it gets easier over time as your comprehension improves. Again, this is a journey. You will most likely see huge gains at first, and while these gains taper off over time, improvements are still made long after initial activation as I can personally attest. I just went to my first NFB state convention post-implant and, while I didn’t do everything I wanted to do and things were a bit overwhelming at times, I still managed. It is both challenging and thrilling to learn to hear in an entirely new way.

I hope this article has been helpful. If you or someone in your affiliate is going through a cochlear implant, know that it is a process. Be patient and help them when necessary. If you are the implant recipient, don’t be afraid to ask for help when necessary. If you work hard and are patient, you will be rewarded with better, richer hearing.

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