Sorry, this entry is only available in Norsk.
Major changes in sounds happened during the first few days. The first hours after the activation everything heard just like bells. All voices were perceived as very bright and female-like, even the profound male voice of my sound technician. I could hear the letter “s”, something I’ve never heard before, but in reality I heard everything as vowels. I was (of course) not able to understand the sounds and especially speech the first days, so I was completely dependent on wearing a hearing aid in my other ear. But it’s best to use the CI only as much as possible to really listen and get used to the sounds.
During the next few days I felt I could hear better in some situations compared with hearing aid, even though the sounds were not fully understandable yet. For example already the second day I could better separate voices from people in a subway from the noise coming from the subway and its engine. And I could separate sounds from their echo, when sitting in a hallway or somewhere with a lot of echo. Even better was I heard less echo and much more of the sound actually causing the echo, such as voices or footsteps. If I switched on my hearing aid on my other ear for comparison I only heard echo. The voices also became much darker during the days after activation. Luckily men now sounded like men.
During the adjustments of my CI it became clear that I couldn’t hear the 4-5 brightest (treble) electrodes. When the technician sent sound in those frequencies I didn’t perceive them as sound, but as pressure on my head. This is common for people with a profound hearing loss who’d always been deaf in the treble or bass area, and it takes a while until you can perceive sound in those areas. To make it more comfortable we created a program where the 4 most treble frequencies were excluded. A couple of days later I perceived sound in the darkest of those four freuencies, included it in my program, and so on. In a few weeks I perceived sound on all frequencies.
During those first days of activation my CI was programmed with Bionics’ unique feature which distribute the 16 electrodes to 120 frequencies, but it was too early to hear a difference yet. (read about HiRes ® Fidelity 120). After a few weeks the sound technician realized he made a mistake when telling me which program was which (on purpose or not?) so it turned out the program I preferred was the one with 120 frequencies. I’m still using that feature.
It should be mentioned that I was bothered by tinnitus (ringing in the ears) from day one of CI activation. The tinnitus lasted even after I took off my CI and made it difficult for me to sleep. The next morning the ringing was gone, but after a few hours with CI it started again. Sometimes the tinnitus was so loud it interfered with me trying to listen at sounds, and it often “tricked me” believing I heard noises that weren’t there. I sought for information and some people told me tinnitus was not common with CI, except perhaps a period after activation. I was told people who struggle with constant tinnitus normally get rid of it after getting CI. The technician in charge of my case was wondering whether the tinnitus was because we were stimulating the hearing nerve on places it has never been stimulated. He had had one patient earlier who got a serious tinnitus problem after CI activation, and chose the same CI producer as I did. I became quite frustrated and worried the tinnitus would never go away, a problem I have never had before. Luckily I had less tinnitus after approx. one-two weeks and after around four weeks I never had tinnitus again.
The weeks went past with many sound experiences I’ve never had before: I heard the computer mouse clicks, my cellphone vibrating on a table some distance apart and I finally realized how hearing people could understand whispering. I was too anxious to try music yet. Speech had changed from bells to “vræ vræ”-sounds so I still had to wear hearing aid on my other ear in order to understand speech.
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.
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.
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.
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.
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