CIborg bloggen til en ung voksen CI-bruker

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.

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.

When you (finally) receives a letter from the hospital the first step is to evaluate you. This spans in two phases and often happens with several weeks inbetween. (Call the hospital if it takes too long to receive info on the second phase).

Phase 1

In the first phase they will test your physical basis for CI. During a day on the hospital you get a CT/MR-scan, taken blood of and questioned about your medical condition. Completely safe tests. It’s mostly boring because of all the waiting. You don’t have the opportunity to ask someone about CI or surgery. The doctors you come in contact with in this phase has no connection whatsoever to the CI team, their job is just to perform the tests.

You are then sent home to wait a few weeks for a second letter for your second phase. This could take several weeks. I called the hospital when I didn’t receive a letter after a month or so. The hospital excused and sent the letter that very day.

Phase 2

During the second phase you will meet the CI team who will test your hearing as it works for you today, this normally take two days (you normally leave home the first day and come back the next). A person from the CI team is arranged to meet you, guide you and answer your questions during those two days. You will take a normal hearing test, other hearing tests and a chance to talk to a geneticist about your hearing loss. All the tests from phase one and two are then weighed up and decides whether you will benefit from CI. But the most important test is the sentence-test, where you sit in a echo-free room with speakers that play sentences you have to repeat.

My contact from the CI team came and brought me in a room to talk about CI. This is your chance to ask all your questions! After I completed the normal hearing test (where you sit in a soundproof room with earmuffs without hearing aids, and give signals when you hear something) my contact believed I would benefit well from CI because my speaking was well developed and my utilization of the remainder of my hearing was very good. People who are born deaf and have not used hearing aids the first years of childhood and not developed a good spoken language, are normally refused CI. In addition CI only help those who have a well-functioning hearing nerve but with damage in the inner ear.

But my contact changed her opinion after the sentence-test. I think I got 85% or more, which conflicted with my bad hearing. Even though the CI team and the doctors understood my good score was because of my ability to guess, I was now risking a rejection. I protested and asked for a more realistic test. Nothing is less similar to real life than a completely quiet and echo-free room where the sentences are pronounced slowly, clearly and loudly. During the second day I did another sentence-test with background noise, but my score was still too good.

My chance of getting CI was poor, but that changed after speaking to the geneticist. The geneticist had called experts on x-ray getting them to take a look at my CT-scans and confirmed I had an underdeveloped cochleas. Instead of the normal 2,5 turns I had only 1,2 on both of my cochlea. In addition I had something called enlarged vestibular aqueducts inside the cochleas. He diagnosed me with Pendred syndrome, a genetic disorder that in 50% of the cases combine goitre and those specific malfunctions in the cochleas. This also means that the increased pressure in my cochleas will gradually destroy all my hearing until there’s nothing left. That I’m gradually turning deaf didn’t grasp me before several weeks after this conversation.

Only five minutes after my conversation with the geneticist I had my final conversation with a chief surgeon and the CI team. They offered me a CI surgeon despite my good score at the sentence-test – Pendred syndrome alone was reason good enough. I was still bewildered and needed to think about it so I didn’t sign. I got the acceptance letter with me home and a new session a month later for signing and approving CI surgery.

Next phase: Getting CI: Deciding.

Remember that your own starting point affects how you perceive sounds from CI and how fast or slow you learn to hear again. There’s a big difference between growing up with normal hearing and loosing the hearing in adulthood; and being born profoundly hard of hearing or deaf. Read my starting point, so you are aware of my previous experiences with hearing.

I will split my experiences in getting CI in different posts; CI evaluation, deciding, surgery and activation (click the links to read the posts). Following is a short summary of each part.

CI evaluation

The first step in the process happens when you finally receive a letter from the hospital calling in for a session for evaluation. The hospital will check if it’s physically possible for you to get CI and if you fulfill the needs and requirements to get a surgery. In other words they will find out whether your hearing is poor enough or if you will loose hearing because of a physical condition and whether you will benefit from a CI. Unfortunately many people get rejected after the evaluation if they don’t fulfill the requirements.

Making up your mind

If the hospital offers a CI surgery after your evalution, you still have the option to say “no” or “maybe later”. Using a CI is different than a hearing aid and requires a long training period with unfamiliar situation, good or bad. A CI-surgery is not reversible and will destroy your remainder of your hearing. At the same time there’s many (if not almost everyone) who make the most of CI and function almost as someone with normal hearing. Also you have to choose between different CI producers without the possibility of testing them, and if you’re 18 years or older you have to choose which ear to operate as well.

CI surgery

The surgery itself is not as complicated as it used to be, and spans just a few hours in the operation room. But there’s some information you should know beforehand. I’m talking about my experience before, during and post surgery.

CI-activation

A whole new world of sound awaits you when you finally activate your CI. But unfortunately your brain doesn’t understand it. Here I’ll tell you about my first CI turn-on and experiences of CI-sound. It’s important to remember that it takes time to learn to hear with CI. A long time. Don’t give up, for with training and patience you’ll get there.