March 18th, 2011 by Rachel | Tags: Adults, CI User Story, Cochlear, Cochlear Implant, Failure, Life | 1 Comment »
Yes. I can absolutely assure you a cochlear implant is worth every single penny. To be totally deaf, in my opinion, is totally unnecessary in this day and age, especially for those that have had hearing before. If you can have a cochlear implant, then have one. Here’s my story…
I was originally implanted in 1993. I was the 8th adult in New Zealand to receive one. That was back in the day when funding was no problem, and a waiting list was unheard of. I was what they called a ‘star performer’ back in those days. 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. My hearing continued to improve with each subsequent upgrade – from the old MSP, to Spectra, then the 3G. Very few people realised that I was totally deaf, let alone had a hearing loss at all. My hearing was so good that I even once put up the phone to my totally deaf ear, forgetting I couldn’t hear out of 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 fact, I thought that services for the deaf have improved, simply because *I* had no problems. How wrong I was.
In 2007, I woke up one morning and put my implant on my ear, as I did every morning. But something was different. Sounds were hurting me badly. It made me feel nauseous, dizzy. I couldn’t tolerate it at all. I went to my implant centre, and they turned off quite a number of electrodes to make it more comfortable for me. I was back again a few days later to have more turned off. And more. Before I knew it I was down to 5 electrodes. An integrity test was done, which found nothing.
Failures of Cochlear implants in New Zealand are uncommon, and with the integrity test showing nothing, it was then presumed that I had perhaps an inner ear infection, so 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 that my left ear was totally dead and unable to have an implant.
Meanwhile, I struggled. I could no longer hear on the phone. I relegated the implant to a drawer, only bringing it out if I had to hear something important. It would aid me with lip-reading only slightly. I came across discrimination. I had trouble dealing with banks, power companies, and telecommunication companies. All these big businesses are geared to serve hearing customers, not deaf customers. I blogged about it. Occasionally, the 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.
Finally in March 2008, I was re-implanted. I was scared and nervous, not knowing if it would work or not. Switch-on came in April 2008. At first, I could hear okay, but people’s voices sounded like chipmunks. I was assured that chipmunks would lessen, but it never did. I knew something was wrong, but I couldn’t put my finger on it. My results were promising, but not startling, and they didn’t improve. Over time they got worse.
I started getting facial stimulation, in my temple, in the back of my throat, around my eyes. I was back to the implant centre, and one by one the electrodes got switched off. I asked for an x-ray. I remembered reading an email years ago of someone who’s 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 come out of my ear, and I was back down to 5 electrodes!!! For someone with only one ear that can be implanted, this was a disaster. For me it was devastating. I wanted to hear again. I started losing touch with friends and family, as we couldn’t communicate each other via phone. My only form of communication was my laptop via Skype and msn to keep me in the loop. I felt isolated again. I lost the will and energy to go out and socialise. Things got too hard. Christmas was the worse. I managed to get through Christmas, but cried through New Year and turned down offers of any socialising. I finally went to the doctor after New Year and was diagnosed with depression for the first time of my life. I was given a prescription which I had filled. The depression drugs sat on the bench because I didn’t want to take them.
So instead, I sat down and designed a ‘plan’ to keep me busy. It involved walking and exercise, running, gym, photography, and scrapbooking. I filled up my day so I would be tired at night. It worked. I gradually got used to hearing nothing and started to be happy. I am an excellent lip-reader, and so if that’s all I had, then that’s what I had to do.
March 2009 came around and I was finally re-implanted again. Switch-on was in April 2009, and this time it was a success. No chipmunks. I was talking on the phone to my friends within an hour after switch-on. It still wasn’t perfect. Compared to my first implant, I struggled in background noise, and the sound wasn’t as natural, but I was hearing much more than I had in the previous 2 years, and I would take what I could get!
There is no way I would choose deafness over being able to hear and be part of the world.
I just had my 2 year anniversary of my last implant that was done in 2009. My 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. My expectations were exceeded, 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. 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 the hardships of living in silence. 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.