CI Eval. Results.. Though a Bit Discouraged

I got to my appt. 15 minutes early to fill out paperwork. I was ushered in with the audiologist. She first gave me a negative outlook on the whole thing while the audiologist I have in Texas has a really gun ho attitude. The audiologist I saw that day really wasn’t sure how well I was going to hear with a cochlear implant in the ear that I haven’t heard out of for 22 years. I know there will be a challenge; I’ve taken speech therapy before for many years. I didn’t understand why she was so negative over it. I then specifically told her that I wanted a CI evaluation. There was a lot of confusion because for some reason I was not down for a CI evaluation. They had me scheduled to see the audiologist for a hearing test and then to see an ENT. I had no idea why. Even though I explained to the audiologist what I wanted, she still sent me to see the ENT with doubts that she would have time to do the CI eval. that day. I was upset; my husband was starting to get upset. The ENT, like we had suspected, had no idea why we were in there and told us he would not bill us for the services. This was after waiting for 30 minutes just to see him after getting a hearing test. So I went back to the audiologist. I was trying to be patient, but it was starting to wear thin. I have already waited a month just to see her and my perspective of the place was that it was mostly about children and people who lost their hearing later in life. There wasn’t much room for me there. That appointment discouraged me in more ways than one. Luckily the audiologist just buckled down and did the tests without much fuss. When it came down to the results, she was once again negative. That was disappointing. Apparently, I am on the borderline. I made a 60% on two of the tests (two syllable words and sentences) but a 20% in noise and one syllable words. This makes no sense to me. Maybe someone can explain why the first two tests matter. After explaining dully that the insurance may not cover me, she pronounced me a candidate by the office’s standards. I understand that a lot of what she said that day may be things you need to tell patients, however, she went about it in such a manner that was a bit defeating and that’s what bothered me. I need someone for this process who is positive and excited. I don’t think I can succeed as well in therapy without a doctor who is encouraging. Danny Delcambre, the deaf blind individual from Louisiana who opened the Ragin Cajun restaurant in Seattle, once listed his five spices of life, the second one being that you surround yourself with positive people and to get rid of the negative people.

I think I’m going to steer clear of New Orleans’s audiologists for awhile. I asked the audiologist if she could do the mapping and she said that very rarely that they take a patient who has gotten surgery elsewhere. This makes no sense to me. I’ve heard of this happening with other people – they will go get the surgery done somewhere, but the mapping process done closer to home. She did give me some room in there to argue with her, but jeez I would much rather work with a positive audiologists than with someone who has less hope on how I will turn out with it.

On a positive note, I did get the tests done, so hopefully I will never have to do that again. And I got to see and touch an implant. It was a bit bigger than I thought it would be. It’s heavier than a hearing aid and it felt so strange on my left ear. If I do get it, I wouldn’t be surprised if I try to put in on my right ear. Also, the electrode coil is tiny. I didn’t realize a cochlea was that small. It felt weird that this was such a small part of my body that they needed this equipment for – equipment that was probably 100 times larger than it was. I think the cochlea was just a tiny bit larger than this -> o . FYI, the blue color for the external part is really BLUE. I think I’m going to not get that one. But the silver one was slightly-blue looking which I liked. I am also looking at the brown one since it blends in with my hair.

I learned something interesting: they’re actually inserting two electrodes. One is the electrode into the cochlea and the other is the “grounding” electrode. It doesn’t go anywhere; it’s mostly because you’re dealing with electricity. It probably goes somewhere between the skull and the skin.

I did hear from my surgeon’s office. They want the tests results, which should be on its way this week. Then we’ll see if I actually can get insurance coverage or if I have to fight tooth and nail for it.

I’m a bit worried because I’m starting to lose my excitement about it and am wondering once again if I’m making the best decision for myself. I don’t feel I have found my niche in New Orleans yet and because of that my difficulties with my deafness surface a lot more often. I have seen the numbers: there are probably only about 150 deaf people in New Orleans. So the community isn’t as strong as it once was and maybe not as strong as I need it to be (which is where I think my niche lies: in making it stronger, I just don’t know my role yet).

Another thing I wonder about, am I OK with needing a strong community near my place of residence? There may be times in my life where I may find myself in a situation like this one.

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4 responses to “CI Eval. Results.. Though a Bit Discouraged

  1. Perhaps they weren’t being negative but to avoid patients getting too excited or hopes to high, they have to act neutral. The initial activation can be disappointment which causes a lot of people, believe it or not, to throw their CI’s in the drawer. If they coax the entire process with a bland outlook, the patients won’t be so shocked and apt to give up immediately. My surgeon was very similar to your audiologist. He was very stern, serious, and clear that the CI is not a miracle, that it takes work and time and it may work or may not. I know it is hard to deal with someone who is appearing impartial to the entire process but you are a candidate which is great news!! Even my audiologist had an impartial attitude during my process but not as bad as him. I’ve been down this road before and you have to keep your head held up high. If you can continue to go through the rest of your process to see if you are physically a candidate now, it is worth it. Keep on trucking, don’t give up.

    As far as the sentences go, the FDA has established in order to be a candidate you must have a loss of 70dB and 50% on sentences and open set. I believe they use an average of the tests because we are almost never in a quiet situation. When you go see the surgeon, he will probably order you a CT Scan or MRI and a balance test to make sure you are a candidate physically. Then it is time to argue with the insurance company but keep a positive attitude regardless.

    Keep your chin up and ears open!!

  2. I’m with Abbie! Your eval sounds a lot like mine. And my mom (since I was only 16 at the time of testing) fought the insurance company for about a month. Ours covers the implant and not hearing aids, because implants are under the same category as mechanical hearts and the like. Go figure.

    Keep on keeping on! I agree, some people think that the CIs are a miracle, but it still takes work. And you already seem to understand that 🙂

    I’ve gone through that same feeling, am I doing the right thing? But you never know until you try. 🙂

    As to the strong community, I guess it depends on what you want to do. It’s nice to be able to meet with other Deaf people, but then again it’s also nice to be able to chat online 🙂

  3. Reading about your experiences with interest…. Even though the medical care systems are so different here in Norway as opposed to in the US, there are remarkable similarities as to how it appers to the patient….

    Information is the key, and no one tells you unless you ask….

    Hope you make it one day!

  4. =) Don’t give up….I guess you’re right about the surrounding yourself with postive people, but at the same time, I’m a bit suprised at the audiologist’s reaction to you. I’m pretty sure that it might be a good idea to think about the possiblity of finding a different audiologist that might match your attitude better. =)

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