CIborg bloggen til en ung voksen CI-bruker

There’d happened a few small matters within CI the last few months, so I thought I’d sum them up in a nice little post. Otherwise I have become a year older (sigh), and my Master’s thesis is eating up all my time. So I won’t blog much the next months unless I receive an answer for my second CI application.

A couple of weeks ago I spoke with a man around the same age as myself, just before he was undergoing his first CI surgery. He was a little unsure which CI producer to choose and wanted to question and take a closer look at Advanced Bionics. Bionics was the newest CI on the market when I had to choose, while the alternatives, Med-El and Cochlear, at that time had quite old models. Though not long after my CI surgery Cochlear launched a new CI sound processor, Nucleus Freedom. But this young man was incredibly lucky and got to choose Cochlears even newer sound processor, Nucleus 5, and a much thinner implant just before his surgery. When I read its spesifications and features I got to admit I got a little jealous. When something that small features three different battery solutions (one of them lasts up to 60 hours(!) while I use two rechargable batteries each day) and different programs for different sound situations, we are really seeing a development in CI. I just hope Advanced Bionics soon launch something new at least that good or better!

I still experience progress with music, albeit small. My music experience is almost as good as before CI, but has also improved in certain areas. Only recently I realized how much of the different nuances I can hear in music. I can perceive instruments, song and rythm separately, and I can even sometimes hear what the voices are singing. It’s been a pleasant experience to listen to good “old-fashioned” music and really appreciate guitarplay and voices from e.g. Pink Floyd. Music I normally listen to, such as trance, yield not quite the same experience. On the other side, what I still find difficult with CI and music is that I still use some time to “understand” unfamiliar music. Luckily I no longer have problems recognizing the genre, but there’s some areas I’m not as good at, especially when the music is playing in treble. But I guess it’ll come. I’d for sure hear music much better with two ears instead of only one.

I’ve started using hearing aid on my right ear again. It whistles every time I smile or laugh (yes, that’s pretty inconvient) and I’m not used to getting “clots in the ear”. But using the hearing aid at a lower volume I experience more sound and as the same time relaxing the CI ear a little, even though the hearing aid receive a lot of noise. You see, I have to put the CI’s volume pretty high, almost up to where it gets uncomfortable, in order to compensate for absolutely no hearing on my other ear. It’s in these situations I realize I need to hear on my right ear as well.

Otherwise I’m still hopefully waiting for a letter from one of Norway’s three CI hospitals. I sent an application for CI no. 2 in August and have heard of other people getting a denial letter quite fast. So now I’m walking around worrying whether they have received my application instead of worrying what it would say. Anyway I’m 90% sure I’m getting a denial. But those remaining 10 percents some times pop up to tease me.

Sorry, this entry is only available in Norsk.

Sorry, this entry is only available in Norsk.

It took a while to digest everything. It was my ear specialist that sent the application for CI a few years ago even though I was ambivalent to such a “destructive” surgery. My vague plan was to go through the evaluation and if I was accepted I might consider it in a few years. Maybe. But because of my recent diagnosis Pendred syndrom it was no longer a choice of if, but when.

Just about everyone I talked to recommended getting CI as fast as possible. The younger your brain is the easier and faster it is to reprogram. The doctors at the hospital recommended to get a surgery before loosing any more of my hearing. I would then have more time to get used to hearing with CI and benefit quicker from it. When I showed up a month later at Rikshospitalet, early January 2008, I still hadn’t reached a conclusion. Everything was still a fog of arguments pro and against. But I signed and agreed to get a surgery.

I got a date for a surgery 20 days after I signed.

Deciding which ear

At first you need to decide which ear you want to operate and use CI. Adults (18 years and older) are only receiving one CI according to the norwegian law! Babies born deaf are automatically operated CI on both ears at the same time. If you are younger than 18 you can get your second CI at a later time (before you reach 18 years of course). But adults are only given one CI with the opportunity to apply for the second one after a few years only if you have good enough reasons. This was surprising news, I found this pretty foolish. But that’s the way it is, for now.

For some the choice of which ear to get CI is easy, it’s normal to have a poorer hearing on one ear than the other. The CI team and doctors will normally perform surgery on the ear with most hearing loss, and the doctor will suggest which ear he wants to operate. In my case my hearing is very similar on both ears so this was not a very important choice. But when the doctor suggested to operate on, in my opinion, my best ear, I counteracted his recommendation and asked to operate the other ear.

Choosing CI producer

Before your surgery you also need to choose which CI producer and apparatus you want. If you already have an implant on one ear, you get the same producer as you already have. I got to choose between three producers: Opus (from Med-El), Harmony (from Advanced Bionics) and an old one from Cochlear (this was before their new Nucleus Freedom). They operate the producer’s newest apparatus and implants. Your contact will show you all three apparatus and implants so you can see, touch and even put it behind your ear to see how it feels. But of course you can’t test their sound, so you must rest your choice on the apparatus’ functionality and features.

At that time both Med-El and Cochlear were old models, so it didn’t go long before I chose Advanced Bionics’ Harmony. American Bionics is pretty new on the market and at that moment the most advanced, and it is not offered for babies.

My Advanced Bionics’ Harmony apparatus with ear mic

The main reason I chose Harmony was because it had, unlike the two others, a good battery solution. Bionics feature rechargeable batteries, it comes with four of them and a charger. I found that much easier, environmentally friendly and financially better than buying and changing three large disposable batterier every other day.

In addition the apparatus had an advanced feature that divides the sound from its 16 electrodes into 120 frequencies instead of only 16, 21 or 24 as the other producers. This feature should give richer sound for music and noisy environments.

But the Harmony has no remote control and the volume wheel and program switcher sits on the apparatus behind the ear. Finally it was the smallest, lightest apparatus, making it more comfortable to hang on your earNext phase: Getting CI: Surgery.