CIborg bloggen til en ung voksen CI-bruker

The student at work

I have completely put CI 2 (and CI-blogging) aside during December 2009 and January 2010 in order to focus on finishing my Master’s thesis. The last week before hand-in was tough and I was relieved when I finally, after 2 years, handed in my thesis February 1st 2010. After that I suddenly had all this free time and decided to update my CI blog.

Around December 2009 I got impatient waiting for a letter from a CI hospital and decided to investigate. At that time I had been waiting four months for an answer to my CI 2 application. I decided to first ask my hearing doctor to check whether he had sent the application at all, just in case. I then found out that they had received a rejection from Rikshospitalet only a month after sending in the application – the hospital just didn’t send me a copy. This means that my CI 2 application was, already in September 2009, rejected without me knowing it.

I was not at all surprised by the rejection, but was still disappointed. Especially because I have had waiting for several months without receiving any information. I asked my hearing doctor to send me a copy of the rejection, so I could have a statement, black on white, saying an ear going gradually deaf is not a good enough reason to get CI.

Piece of Rikshospitalet’s rejection (in Norwegian)

Subsequently I’ve learned that the hospitals are now going through all CI 2 applicants who fulfill certain criteria (as described in this post ). This means that applicants with Meningitis, severe tinnitus or visual problems are now receiving CI 2. The rest of us, who “only have hearing issues”, have to wait. Rikshospitalet finished my rejection stating that I am currently on a wish list, without any more information about how long I must expect to wait. Some months, or years even?

After several recent social arrangements, with many people at a time, I have begun to realise how poor my hearing is with only one CI. Even though everyone is behaving nicely and one by one are speaking, I have a hard time understanding everything that is being said. I now feel completely dependent on wearing my hearing aid in my other ear, but it isn’t good enough. In these days when I’m starting to look for a job, I don’t feel I can independently handle a job situation without any help.

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.

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.

About six months ago, only a year after I obtained CI on my left ear, I wanted CI no 2. I am 100% confident I’ll be able to hear better with CI on both ears. I could be able to obtain directional hearing (something I’ve never had before) and much better chances to understand sounds and speech when there’s two apparatus receiving sound. When you have two sound sources you have a much better chance to receive and interpret sound, because the apparatus’ll support each other if one of them were not able to perceive. Nowadays I’m walking around without hearing aid on my right ear, because in my opinion the good hearing I receive through my CI kind of disappear in all the noise perceived by the hearing aid. In practice I’m walking around with one wellfunctioning ear and the other completely deaf. To hear with only one ear require effort, concentration and much excess energy, and I realize this won’t work much longer. All this combined with gradually worsening hearing on my right ear made me look at the possibilities of CI no 2.

I was told already at the CI no 1 evaluation adults today only are offered one implant. Children under 18 years of age have the right to receive two implants, and babies are operated with two implants simultaneously. But adults can only have one CI! It’s like giving someone glasses with only one actual lens, or just one hearing aid to someone who need two.

Why adults only get one CI is a political and economical issue. A CI-surgery is expensive for the state to perform. One surgery can come up at 6-700 000 to 1 million Norwegian kroner, and that’s more expensive than e.g. a heart transplant. Politicians don’t see the use of offering two implants when you already have one, compared to the costs. There are not established good reasons that people function better hearing with both ears before one ear. The fact that all people and animals are born with two ears – and that’s a reason why everyone has two ears to listen with in the first place – seem to be forgotten.

It has been some coverage about two implants for adults in media, but far from enough to have some real effect. In the articles below you can also read the reasons why adults are offered only one CI: (PS: Articles are in Norwegian)

• Deaf can hear – with one ear: Article in Dagbladet (published 14.03.2006)
• Two cochlea implants too expensive: Article in Dagens Medisin (published 11.10.2007)
• Cochlea Implantat at adults – one-sided versus two-sided implantats: Case in Nasjonalt råd for kvalitet og prioritering i helsetjenesten. (from 08.10.2007)

In the last link above (Nasjonalt råd for kvalitet og prioritering) is a note from Association for hard of hearing in Norway (HLF) stating they’d look at the case. But after some research very little has been put in effort by HLF. This is disappointing because HLF is in practice the only associations hard of hearing can use and get help from in such cases. I have also uncovered some research on CI, but only one paper adress one ear versus two – the main focus lies on other factors, such as age. We need specific and tangible research and/or media coverage stating people function better with two ears, not just one. We may need to speak “the language of politics” and present calculations and cost statistics where the costs of two CI’s are put up against long-term costs for people with only one implant – e.g. disability insurance, “poorer” labour because of reduced capability and other implications.

I could go on forever why people function better with hearing on two ears before only one, but I neither have time or effort to dig through this thoroughly. I don’t have a foot (or brain) inside politics, but if I have to fight in order to receive CI no 2 I will definitely contribute! I know several young adults with one CI who want number two. If we becomes many enough I hope we can convince the politics to put aside enough money to offer two implants – for everyone who need it.