Getting CI: Evaluation
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.
