This is Part Two of my cochlear implant story.
Part One Part Two
Forced to Change Implant Programs
One reason for a delay was what happened with my original implant program. I started with a program in Washington, DC. Around the time my hearing aid trial ended, the program cut off anyone over the age of 30. So I switched to another implant program at Johns Hopkins University Hospital in Baltimore.It was a blessing in disguise. The DC program had moved somewhat slowly, in part because the program was just starting up after a hiatus. In contrast, the Hopkins program was streamlined. Once I started working with Hopkins, things moved quickly. Before I knew it, I had a surgery date.
Surgery for the Cochlear Implant
Before the outpatient surgery in February 2008, I had to confirm which ear was to be implanted. The surgeon brought a box to me in the pre-op room that contained the implant. I stared at the box, thinking "This thing will be inside of me in just a couple of hours!"Post-surgical recovery was relatively uneventful. I had some expected pain, but relatively little need for pain medicine. There was fatigue, fluid in the ear, a burning sensation, and temporary vertigo, taste, dry mouth, and balance problems. I was grateful that I did not have nausea at first, though one night I did come dangerously close to throwing up. I halted the nausea with medication.
The surgical area had to initially be cleaned twice a day. Later it was reduced to just once a day. There was no infection, bleeding, or oozing though I was watched closely for any symptoms. However, the worst part was the strapped-on outer protective cap, which I had to wear for the first 48 hours.
That cap was uncomfortable and painful, and I had so much discomfort from the way my ear felt (it felt as if it was folded backwards in half). The discomfort and pain combined distracted me from what was happening on my forehead. We didn't know it, but the strap across the forehead was too tight. It rubbed my forehead so much that it almost bled. When we removed the cap after the first 48 hours, we discovered the injury. Now I have a small scar on my forehead, a permanent reminder of my cochlear implant surgery.
My hair grew back quickly over the shaved area. And by the time I returned to work, enough had grown back that I was not embarrassed. I did return to work too soon; I still had too much fatigue. In addition, after a brief period when everything seemed to be returning to normal, I had a "relapse." My head was so filled with burning fluid that it was like a sponge, and it hurt to touch the head. Dizziness and balance problems returned with a vengeance. One night I called an audiologist, who assured me my experience was normal. It turned out to be the end stage of the healing process. For a long time after healing, my ear felt as if an earmold was stuffed in it.
A post-operation check by the surgeon during week four confirmed things were healing nicely. Everything was all set for my activation the following week.
Cochlear Implant Activation Day
March 10, 2008 was my hook-up, or activation, day, approximately one month following surgery. The first noise I heard was a buzz. The next was a screech. After testing some sounds, I was formally activated. At first, it was loud, and made me dizzy. I heard several sounds, and voices were initially vague. However, I quickly discovered that if I focused on voices, I could hear them. I could understand the audiologist without looking at the interpreter.Going home, I found I understood voices better than environmental sounds. That is still true today. That first day, I had two "CI (cochlear implant) moments." The first CI moment was when I heard a car passing us in the garage (and later, my mother told me that the same thing happened when I got hearing aids as a baby). The second CI moment was when we were in a grocery store, and I suddenly realized I was hearing my own voice.
Life with the Cochlear Implant
Everyone's experience with the implant is different, and how well you do depends on how much work you put into it. Maintaining realistic expectations is also important. In fact, one question I was asked, was what my expectations were. An implantee should not expect too much from an implant.There are things I can not do, and things that I can do. My goal was to reduce frustration. I still need to read lips and combine that with sound in order to understand hearing people, but at least now I can do that with minimal frustration.
I cannot understand television without captions. I can understand television with captions and sound. The implant lets me follow captions, and I have even been able to pick up what speakers are actually saying.
I continue to "practice" by watching television online. Of course, I do better with captions, but I can partially understand without captions. Some cochlear implantees prefer to practice with books on tape; my personal preference is television.
At work, I still need interpreters. I have a dilemma: Do I watch the interpreter or do I try to listen? Listening alone does not work, so I have figured out a solution. I watch the interpreter, and listen at the same time, trying to pick up a few words. This way, I have the benefits of both listening and interpreters.
I have even discovered, to my delight, that I can "eavesdrop" on hearing people. I can "zoom in" on nearby hearing people having conversations or on their cell phones. I do not understand everything, but can pick up a few words.
I am still deaf. I enjoy sound, and still appreciate silence. I call my cochlear implant my "hearing aid." To me, it IS a hearing aid. My implant is not a miracle device, but a tool that has given me back what I lost when I lost the ability to wear hearing aids. So for me personally, the implant IS a success.
