What a Cochlear Implant is NOT

and What It IS!

My sister happened to be in town this past week for a meeting. She lives in the Ft. Worth area, and I only get to see her once a year if I’m lucky!

I’m sure you can tell from the picture that she is my baby sister, and is a great deal younger than I. Although we do not know each other like we did when we were growing up, we still have a lot of history growing up on a ranch in southeastern Colorado. In spite of distance and busy lives, nothing changes the fact that we are sisters.

Since I lost my hearing over a long period of time, and since my family is spread out all over the U.S., most did not realize or understand what the annual changes in my hearing loss actually meant. It came as rather a surprise to them I believe when I could no longer talk on the phone to them, and an even bigger surprise when they learned I planned to get a cochlear implant.

I don’t consider myself a “poor communicator” and yet sometimes I communicate certain things very poorly. I think that sometimes because my immediate family and I know so much about hearing loss, that the people in my life also know a great deal of information about hearing loss. Since I was sort of also classified as “the whiner” in my family growing up, I also think that this affected the way I chose to relay information about my progressive hearing loss. As I acquired the disability of hearing loss over time as an adult, I worked extra hard at keeping how difficult the transition was for me to go from a person with normal hearing to a person who couldn’t hear at all.

One of these days I’m going to have to hammer out a book or something. There would likely be some chapters that even my immediate family might be surprised at… things that I kept between myself and God.

My sister loves me and I love her. But Diane doesn’t understand hearing loss. She has her own family, job, friends and LIFE. It’s difficult to research and discover things about something that seems “fuzzy” to you… something that you don’t clearly understand, when it isn’t happening to you. So I don’t fault the question she asked when we were talking this past week. I think it’s a question that many people think, but just don’t ask. Taking advantage of the fact that we are sisters and that she is not the type to sit around wondering when she can just ask… she point blank asked me,

“So? If you have a cochlear implant now, why do you need a dog? Didn’t that (as she gestured towards my CI and bling) fix you?”

I think many people think a CI “fixes” your hearing. They may think that now that you have a cochlear implant, you have perfect hearing and are “normal”. I realize that most people talk about how things are different by discussing things “alike” first… followed by how things are “different”. However, since I believe there are many misconceptions about CI’s, I wanted to start with what they are NOT.

What it’s NOT:

1. A cochlear implant does not make you Jamie Sommers. You are not the Bionic Woman (or man) and can hear things 4.2 miles away.

2. A cochlear implant does not make you a lightening rod. Someone with a cochlear implant is not more likely to be struck by lightening than someone else. Sure! If you are playing outside in a lightening storm on a hill without cover, holding a golf club in your hands then yes… you might be hit by lightening. But it’s not because you have a cochlear implant in your head.

3. A cochlear implant does not provide crystal clear hearing where the recipient never has to say “huh?” again.

4. A cochlear implant’s magnetic coil is not a “plug”. I realized my sister must have thought this when she winced as I took it off to show her. There is not an opening to your brain, it doesn’t “plug in” like a cord in an electrical socket. There are no gruesome wires or frankensteinish types of protruding pieces of metal.

5. A cochlear implant does not make someone begin to have balance problems… usually. I have heard that it can happen, and that is why good surgeons always run a battery of tests which include ways to detect if you have vertigo problems already. I have always been “dizzy” (though never blond) and I almost failed the tests at Johns Hopkins on vertigo. I have a mild version of Meniere’s disease, and looking back I think it began at around 18 years old. I did not begin losing my hearing until I was 25. I have a history of accidents a mile long. Every emergency room doctor knows me by name. I break bones, fall a great deal, and run into things. I actually have no memory of NOT being this way. Growing up I was told I was “clumsy”. My CI didn’t make me dizzy. I was already dizzy.

6. A cochlear implant does not allow you to hear every kind of environmental sound. There are still things I don’t hear at all, or don’t hear well.

What it IS:

1. A cochlear implant is a bionic prosthesis type of device surgical implanted into your cochlear array. One is “mapped” frequently in the beginning (sort of like being programmed) and then usually once a year for life after receiving one. Each mapping allows adjustments to enable you to hear things more clearly, and electrodes are tested and checked.

2. A cochlear implant can be worn anywhere except in water. One cannot scuba dive after receiving a CI (due to pressure). My particular implant device, the Nucleus Freedom, is “splash resistant”. I can get caught in a rain storm without an umbrella, or hop into the shower accidentally without removing it and not destroy it. Certainly, should those things happen I would promptly put it in my Dry ‘n Store (an electronic drying device), nor would I ever do those things on purpose. I mean I DO shower on purpose, but I don’t jump into the shower with my CI on with the intent of destroying it. (In hindsight in writing this I thought I should assure my readers that I DO shower, and do so ON PURPOSE).

One can swim with a CI, but not with the outside components attached. Water tends to ruin them. As long as you are not scuba diving, you can still enjoy swimming, snorkeling, and rain showers. You just “play smart” and take care of the device that houses the controller, etc.

3. A cochlear implant allows you to hear again… when you have reached the point that you no longer can. Hearing again and “hearing perfectly” are two different things. One doesn’t grouch that they aren’t “normal” when they can hear after they could NOT. I can talk on the phone now (in a quiet room with my own phone), I can hear in church, talk to people face-to-face and in small groups. I do not do well in restaurants, large groups, concerts, etc., without special assistance from infra-red or FM assistive listening devices. A “loop” is my favorite way to hear in these “tough” environments. You walk into the room, switch your CI to t-coil, and you “hear” without the background noise.

4. The magnetic coil of my implant connects to another magnet securely embedded in my skull. The magnets connect very well through my skin. Nothing shows, and I try very hard to not appear “gorey”. Grin! I’m rather proud of the fact, that I’m probably one of the few people I know who can lean into the refrigerator and “lose” their ears.

Weirdest place I ever lost my CI? At the grocery story in the pickle isle. I was leaning down to try and find the specific type of pickles my family likes, and “whoosh” off my CI went to connect to the metal lid of a pickle jar. As I was desperately looking for my CI, a lady came by and smiled and said,

“Are you pregnant honey? Looking for pickles?”

I was so astonished that I replied, “No! I’m looking for my ear!”

Needless to say she shrieked and ran.

5. A cochlear implant can sometimes mask tinnitus… another common symptom and side effect of progressive hearing loss. It is a “hum” or ringing sound in your ears. The CI can mask this effect and keep you from hearing it. I have also met some people, however, who now have tinnitus (when they remove their CI) and they did not have it before.

I’m use to the ringing. When I take my CI off at night the ringing begins. But it isn’t bothersome for me, and I go right to sleep. When hearing the ringing, I no longer shout, “Hello? Who’s there?”

6. My cochlear implant and my CI experience is not like anyone else’s. Everyone who has a CI has a unique experience. I still hear new things everyday. But my experience, what I can hear and not hear, is as unique as my “map”. No two recipients are alike. I think that is why I think an audiologist specializing in CI’s would be such a fascinating job!

I hope my little “list” has helped!

Denise Portis
©2007 Hearing Loss Diary

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