Is a cochlear implant worth it?
I was originally implanted in 1993. I was the 8th adult in New Zealand to receive one. That was back in the days where funding was no problem, and a waiting list was unheard of. I was what they called a ‘star performer’ because within 24 hours I was hearing and recognising voices. Within 3 months I was hearing on the phone with ease. I threw away my hearing aid. With each subsequent technology upgrade my hearing continued to improve - from the old body worn MSP speech processor, to Spectra, then the first 3G behind the ear processor. Very few people realised I had a hearing loss at all, let alone that I was completely deaf. My hearing was so good I even once held the phone to my totally deaf ear, forgetting I couldn’t hear from it!
I will even go on to say that I forgot what it was like to have a hearing impairment. I forgot how hard it was to deal with people who didn’t understand deafness. In actual fact, I thought services for the deaf had improved, simply because I had no problems. How wrong I was.
In 2007 I woke up one morning and put my implant processor on my ear - as I did every morning. But this morning something seemed different. Sound hurt. Badly. It made me feel nauseous and dizzy. I couldn’t tolerate it at all. A visit to my implant centre and they turned off quite a number of electrodes to make it more comfortable. But within a few days I was back again to have more electrodes turned off. And then even more. Before I knew it I was down to just 5 working electrodes. An integrity test of my internal implant was undertaken, which found nothing wrong.
Failures of Cochlear implants in New Zealand are uncommon, and with the integrity test showing nothing, it was presumed perhaps I had an inner ear infection. I was asked to wait for 3 months to see if it would settle. It didn’t. Further tests were done to find out if I could have an implant in my other ear, but the results showed my left ear was totally dead and unable to have an implant. Ever.
Meanwhile I struggled. I could no longer hear on the phone. I relegated the implant processor to a drawer, only bringing it out if I had to try to hear something important because I found it would help me slightly with lip-reading. I came across discrimination. I had trouble dealing with banks, power and telecommunication companies. All these big businesses are geared to serve hearing customers, not deaf customers. I blogged about it. Occasionally these companies would read my blogs and get back to me, but more often than not I was ignored, just like the Deaf are most of the time. I felt I had gone back to my past life and I didn’t like it one bit.
Finally in March of 2008, my internal implant was removed and I was re-implanted with the latest technology. I was scared and nervous, not knowing if it would work or not. Switch-on came in April 2008. Initially though speech sounded like chipmunks I could hear okay. I was assured that in time the chipmunk sound would lessen. It never did. Once again, I knew something was wrong, but couldn’t put my finger on it. My speech recognition results were promising, but not startling, and these didn’t improve as I would have expected. Instead over time my speech recognition got worse.
Then I started getting facial stimulation with certain sound frequencies; in my temple, in the back of my throat, around my eyes. Back to the implant centre, and one by one the electrodes were switched off. I asked for an x-ray. Years ago I remembered reading an email from someone whose implant array came out after implantation, and I had a funny feeling that was what had happened to mine.
One x-ray later and sure enough, the electrode array had graduated out of my cochlea, and I was back down to 5 electrodes!!! Since I could only ever have one ear implanted, this seemed like the worst disaster. It was devastating because I wanted to hear again.
Once more I started losing touch with friends and family because I could no longer phone them or them me. My only form of communication was my laptop via Skype and msn to keep me in the loop. I felt isolated. I lost the will and energy to go out and socialise. It was just too hard. The end of year season was the worst. I managed to get through Christmas, but cried through New Year and turned down offers of any socialising. After New Year I finally went to the doctor and, for the first time in my life, was diagnosed with depression. I was given a prescription which I had filled but the anti-depressants sat on the bench. I just didn’t want to take them.
Instead, I sat down and designed a ‘plan’ to keep me busy. It involved walking and exercise, running, gym, photography, scrapbooking. I filled up my day so I would be tired at night. It worked. I gradually got used to hearing nothing, and found happiness again. I am an excellent lip-reader, so if that’s all I had, then I accepted that’s what I had to do.
March 2009 came around and I was finally re-implanted. Switch-on was in April 2009 and this time it was a success. No chipmunks. I was talking on the phone to my friends an hour after switch-on. It still wasn’t perfect. Compared to my first implant, I struggled in background noise, the sound wasn’t as natural, but I was hearing much more than I had in the previous 2 years, and I was prepared to take what I could get!
The 2 year anniversary of my last implant has just passed. My speech comprehension scores are 100% open set sentences in quiet, 100% open set sentences in +10db noise, 95% open set sentences in +5db noise, 85% single word test without lip-reading and 93% words and phonemes (single letters or sounds). My results have exceeded all expectations, and I’m now doing better than I did with my original implant back in 1993. I couldn’t be happier.
However, I no longer take my hearing for granted. Technology can fail and does fail. When my first implant was tested they found a minute crack. It had taken 15 years for body fluids to penetrate and cause my hearing to fail. The second time, my cochlea expelled the electrode array for some unknown reason. Would I go through another surgery if it failed again? Yes. I absolutely would. There is no way I would choose deafness over being able to hear and be part of the world.
I am still deaf though. Every time I take my implant off, the silence comes back. I remember. I now make sure I keep in touch with the Deaf Community, and offer to help whenever I can. At the moment I’m lobbying for increased captions for our television. I will continue to do this, and I will never take my hearing for granted again.
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