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.

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.

Sorry, this entry is only available in Norsk.

The first thing you need to be prepared for is that it takes a long time to train your hearing with CI. I can’t emphasize it enough. The brain has to readjust to receive different signals and it takes time before the electrons are adapted. Even adults who had had normal hearing before loosing it will experience the sound through CI different from before. There’s probably very few people who actually hears well (understanding sounds) the first days of activation. It can take several months up to several years before you truly benefit from CI. Obviously you get better results if you actively use your CI and practise as much as possible listening to sounds, preferably also with an audio educator. You have to practice listening with CI, just as you have to practise balancing a bike before you can bicycle.

Even though I was mentally prepared to not understand the sounds right away and was expecting a long period of training, I was excited about how it would sound as opposed to hearing aids – something I’m so used to. I arrived excitedly at Rikshospitalet and was taken into a small room with an audio technician and my contact from the CI team. The audio technician had my CI apparatus, connected a wire to it from his computer and put the magnet on my head. I was very surprised over its position, it was quite far back. The placement of the magnet depends on the CI producers and Bionics position it (unfortunately) quite far away behind the ear. This could lead to issues such as losing connection when leaning back on something.

The CI activation normally last four days. You fine-tune the apparatus once or twice every day and the remainder of the day you try to perceive as much sound as possible. When you are adjusting the sound you sit with your apparatus on your head which is connected to a computer. The program on the computer transmit short frequency sounds. Remember to turn off your CI or hearing aid on the other ear, I didn’t catch that! The volume increases until you find it at a acceptable level or before it gets uncomfortable. When you say stop the audio technician proceeds to the next frequency. This repeats itself until you have adjusted a comfortable volumne on each of the frequencies. After this the technician activates your CI so you can hear the surroundings.

My first day with CI

Nothing could’ve prepared me for the sound I heard when the technician first activated the CI to listen to the surroundings. Voices sounded like bells and was completely impossible to understand. All the sounds was in very high frequency and it was weird to listen to the male technician talking with a bright Donald Duck-voice. The reason to why I perceived all sounds as very bright is probably because I’d lost all my treble hearing and was used to darker (bass) sounds. Therefore my brain has adjusted all familiar sounds at a darker level because it doesn’t include treble frequencies. The CI provides a much more accurate sound by using the whole frequencies range, bass as well as treble, and my brain need to readjust.

The highlight of the day was to hear something I’ve never heard before, namely the letter “s”. During the next four days of activation I experienced large variations and sound experiences. As the days went I got more used to CI and the sound became more comfortable and slowly more understandable, but I was still dependent on using hearing aid on my other ear to be able to understand speech. I have written a separate post on the days after the activation in The days after activation.

The fourth and last day of CI activation I obtained all the equipment to my CI including a starter’s kit (a CD with sounds and spoken sentences) for new CI users. Because I couldn’t hear the most treble frequencies I got a closer follow-up than what’s normal. I left the hospital with my CI programmed in three different programs to try out and a new session in two weeks.

You are told to arrive at the hospital the day before surgery. If you don’t live in the same city as the hospital you are commited and sleeps over in the hospital the night before surgery. The day before you talk with your surgeon and your anaesthesia doctor, and fills out forms with information about yourself such as contacts, regular medication, any diseases you may have and allergies. I strongly recommend bringing something to read this day because you spend most of the day waiting! I myself spent 6 hours at the hospital with at least 5 hours in the waiting room. Because I live close to the hospital I left home and had to fast from 12 o’clock the night before.

The next day I showed up at the hospital hungry, tired and a little nervous at 7 in the morning. Luckily I had my good friend Kim with me who’d stay until after surgery so I didn’t have to go through everything alone. After a good amount of waiting we were brought into my room which I was to share with another girl also getting a CI today. She was already on her way to surgery when we entered the room and I was next.

The nurse wanted to immidiately shave my head – an area of two inches behind and two inches above the ear. I first realized I was actually getting a CI surgery when I saw my shaved area in the mirror. Not much later I changed into a (not very sexy) pajama provided by the hospital and lay in the hospital bed. One hour before rolling into surgery I was given painkillers and calming medicine by the nurse. It didn’t take long before I fell asleep, and was awoken by the nurse who told me it was my turn. What happened after that I don’t really remember, I was so drowsy. The next thing I remember is being rolled into a room with a flat bed in the middle and a lot of people around it. I remember that some nurses tried to take my quilt and I wasn’t all to excited about it, and then asked me to jostle over to the operation bed. Immidiately I got a mask over my nose and mouth and I felt someone anaesthetize my arm. After a few seconds I was totally gone.

I woke up at the awakening room and felt quite comfortable. I had no pains and was drowsy and happy like after a good night’s sleep. All the nurses was aware I couldn’t hear them, so all communication happened through writing on notes. The surgery went fine and all electrodes were functioning. An audio technician are always present during a CI-surgery to check all the electrodes and whether the implant responds. After about an hour in the awakening room I was rolled back into my room.

It’s unusual for someone CI-operated to experience pains after the surgery, with the exception of some hoarseness in the throat because of the tube you’ve had during surgery. Many people are not experiencing any pain in the days after the surgery. I strongly recommend fixing leave from work or studies – especially the first weeks after surgery, and maybe the first weeks after activation as well. I myself had arranged leave for six months from my studies. My timing was excellent as it fit right in the beginning of the spring term giving me a leave for at least three months after CI activation.

Unfortunately I was unlucky and experienced some pain later after surgery and was told I was bleeding from behind the ear. The nurses changed the wrappings and gave me morphine for the pain. I was asleep most of the day, slept at the hospital and early the next day I got visited by my surgeon. My contact from the CI team also dropped by and gave me some papers, such as an ID-card for my implant and a starter kit for CI. A while later I went home, even though you do have the opportunity to stay at the hospital another night.

I also discovered that I had lost my sense of taste on my left half of my tongue and I think the smell in the left nostril as well (I was operated on the left ear). The hearing nerve is positioned between two other nerves, the nerve of taste and the nerve that controls half your face. Of course are the doctors trying to avoid touching the facial nerve, so temporarily loss of taste and smell on your operated side is common. However it was unsure whether it was permanent.

You don’t receive your CI apparatus or get to active it before at least 5-6 weeks after surgery. The implant and the wound have to heal properly before you can apply a magnet on it. During the period before CI activation you are dependent on using your other ear, the operated ear is completely deaf. I heard some people actually benefit from using their hearing aid on the operated ear, but when I tried it I only heard very low annoying noise. It was about time to put away the left hearing aid for good.

The scar 1 week after surgery

The first week after surgery I was practically eating painkillers and was pretty much confined to my bed because of pains. Luckily I felt much better the next week. You can not remove the wrapping behind your ear until after 5 days after surgery, so taking a shower was always an interesting project as you have to keep it dry. The stitches disappears by themself so luckily you don’t need to pull them out yourself.

I was not getting activated until March 25, two months after surgery, because of Easter holidays.Next phase: Getting CI: Activation.