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.

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.