CIborg bloggen til en ung voksen CI-bruker

In my last post I wrote why I want CI no 2 and explained why adults today are not offered two implants. I know others whose application for CI no 2 was declined, and had no expectations when I set up an appointment with my hearing doctor to form an application. My appointment was at August 24th and I spoke with dejected doctor who was beaten down, defeated and almost giving up the political fight to offer adults two implants.

The doctor showed me a note from all hospitals in Norway which do CI surgeries (which is Rikshospitalet in Oslo, Haukeland in Bergen and the hospital in Trondheim). The note stated that no adults (above 18 years) are offered CI no 2 unless they have:

• Meningitis.
• Severe tinnitus.
• Visual issues, for example Usher syndrome.

Even though my expectations were quite low at first, I was still a little defeated by the short list. I had hoped for some leeway for people with considerable profit by two implants or other medical reasons. I had a small amount of hope that my Pendred syndrome, which makes me gradually deaf, would be good enough a medical reason to get CI no 2.

The hearing doctor stated that this is a political fight, e.g. through associations such as Association for hard of hearing in Norway (HLF). Unfortunately it’s nothing the doctors can do, except help forming a good application (which probably are rejected nonetheless).

I expressed my concern that Pendred syndrome would suddenly “strike” and destroy all my hearing I have left on my right ear. There’s individual differences in the time aspect, but if you don’t use the hearing nerve over a long period of time (several years) the nerve will eventually die and stop working for good. When that’s happened there’s no use operating a CI, and I’d had to go the rest of my life hearing with only one ear.

My hearing doctor and I agreed to form and send an application for CI no 2, using Pendred syndrome as a medical reason. In writing I’m still anxiously waiting for a letter from one of Norway’s three hospitals. Unfortunately I’m 90% sure the letter is a rejection. In that case I’d have to start a hard battle in order to get optimal hearing.