I can totally relate to how my hearing works in social situations such as in the pub (at the 4:50 mark)
During my life I’ve tested several new hearing aids programs which claims to reduce background noise and bring forth voices. My experiences have always been the same: all sounds were lowered instead of the noise only, so when I turned up the volume to compensate for the volume loss, I was right back where I was again. So naturally my hopes of hearing better in noisy situations have dampened, and they were very low when Advanced Bionics launched their “backgroundnoise-reducing-voice-enhancer”-feature, ClearVoice, a few months ago. But I’ve never tried such a program in a C.I. before, so I thought “why not”.
I got an appointment at Rikshospitalet in the beginning of July. When the technician recommended to keep my old programming in case I didn’t like the new one, I totally lost all expectations to ClearVoice. He couldn’t quite explain how ClearVoice can separate voices from noise either. I didn’t hear any difference after he’d programmed ClearVoice in and turned it on. Not really surprising since I was sitting in a small office without any background noise at all. The poor technician tried to cause some noise by throwing pens at his desk and rolling his chair around. It didn’t help, but he got bonus points for trying!
The first thing I noticed when I left the hospital and was out by a road, was lower volume than I’m used to. I actually prefer to hear traffic noise well enough when I’m outside, so I can place the cars better and not be run over or something. I decided to give ClearVoice a chance and got inside a tram on the way back to work. I noticed that the noise was at a more comfortable level, and I could hear the woman at the phone next to me really well. After that ride I never changed back to my old listening program.
I’m not sure how ClearVoice works, but it works. When I put on my C.I. I hear all the noise around me. After two seconds or so it becomes almost quiet. ClearVoice understands that this is noise. Voices and similar sounds remains at the same volume level. It took some getting used to lower volume, but when you’ve gotten used to it you don’t want to go back. But ClearVoice works at its best in uniform noise. If the background noise consists of voices, like when you’re in the canteen or in a pub, it doesn’t work so well anymore.
Last week in July I was at a vacation at Hvaler. On the way back home we drove inside a tunnel and the radio was blasting some pop-song. I’ve always had problems listening in cars, and it’s nearly impossible when the car I’m sitting in is in a tunnel. But there I was, hearing the singer’s voice clearly! ClearVoice singled out the voice, but not the music. It was kinda weird listening to, but amazing how well it actually worked.
As for me I always use ClearVoice. It’s not a miracle cure against the trouble hard of hearings have in noisy situations, but definitely a huge help.
It’s been a while since I’ve written something here – mainly because I haven’t had much new to tell regarding CI. The last months I haven’t had time or energy to write. I completed my Master’s thesis in the end of March, and early May I was so lucky to get my very first job!
Since May I’ve been working as web developer at TV 2 (Norwegian TV channel), and I enjoy myself greatly. It’s an exciting working place with many challenges, including challenges in hearing. All of a sudden I had to relate to lots of unknown people in many different situations. But it goes very well, even though I do not use an interpreter or any technical remedies! The only exception is the nemesis of all hard of hearing people: the canteen where we have our lunch. The canteen resides in a large hall with an open kitchen and a lot of people talking simultaneously. This is where I feel the voices are being blended with each other, but with a few repetitions and some luck I understand most of it.
So far I have had almost only positive experiences being hard of hearing in a work context. My colleagues were informed of my hearing issues before I started working there, and they are handling it well. They don’t get annoyed if I in a meeting ask if we could close the window because of the noise outside, or when I ask them to repeat what was recently said so I can be sure I got it right. Completely different from what I experienced at the University!
I have to admit I get a great feeling of achievment to manage at work without any help, even though it can be difficult at times. And I know that I wouldn’t manage half as good as I do now without CI. I’m looking forward to (and hope) I get CI no. 2, and I’m sure if I get CI on both ears, I’d manage even better. Including hearing in the canteen!
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.
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.
I’ve been using CI for almost 2 years now and there’s not much new to tell. Large changes happened during the first year and they were so dramatic I couldn’t NOT notice them. Nowadays I still discover small positive changes, at random, because I’m now so used to hearing with CI.
I still notice small, but considerable, improvements in sound perception especially compared to listening with hearing aids. Just walking out of the apartment and into our stallroom down the hall to get something out of our freeser I notice pronounced hearing improvements. Using CI I hear the difference between the sounds coming from opening doors, keys that bump against something and pushing the key into the keyhole. I can also separate sounds coming from around me from the neighbor opening his or her door down the hallway. My hearing now perceive distance! When wearing hearing aids all the sounds sound alike and are at the same volume. It was not possible to hear how far away the sounds are.
Other small improvements and perceivement in sound nuances are happening everyday. When I’m sitting at my desk I can hear the washing machine spinning at maximum (the bathroom is some distance away and the door is closed) and when it “relaxes”. A lot of people probably think this is silly or are so used to hear stuff like this that they don’t really care. But I know that I wouldn’t be able to separate the sound nuances from each other when wearing hearing aids. I would probably confuse the noise coming from the washing machine with the noise coming from my computer sitting next to me. I can also recognize sounds while I’m in another room and the door is closed. I can for example recognize the sounds when Sindre is playing a racing game in the living room while I’m in the bathroom. With hearing aids I would never be able to distinguish the difference between Sindre playing music, playing a game, talking in the telephone or turning on the TV.
Otherwise I experience better sound perceivement in noisy situations. I feel I can better hear the voices to people I’m talking to at clubs or pubs, but when the background noise reach a certain level all sound is just chaos. When the DJ turn up the volume and people are getting loud I find sign language as support for speech a good partner. But that requires the people I’m out with actually knowing sign language, obviously.
Unfortunately I have some disadvantages to tell about too. I’ve mentioned it before, and I’m saying it again: Leaning back in a chair or similar is uncomfortable during a long period of time. My CI magnet is placed pretty far back on my head, and only a small leftwards rotation of my head puts pressure on the magnet. The magnet rarely comes off and thus cut off the sound, but if I lean back too long and “wrong” I get pains in the area around the magnet. I then have to take the CI off for a while, and thus not being able to hear. This is the only case I’m a little bit worried about getting CI no 2: What if CI 2′s magnet is placed just as far behind, or even further, making it impossible to lean back at all without getting pains? I then predict future pains in the shoulders and neck area!
The christmas and the cold is lurking closer. I recently discovered that something I’ve been annoyed at during my whole life was solved with CI: I can wear a (wooly) hat without worrying about “peeeep” sounds coming from my hearing aids! I have so many times NOT put on a hat when it’s really could outside because I would then either walk around deaf (hearing aids turned off) or with constant “peeeeep”.
For christmas I wish for wooly socks and a letter from a CI hospital regarding my CI 2 application.
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:
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.