This blog has been created for friends/family/coworkers/acquaintances/etc. to be able step with me on this quest of enlightened perception...... the fancy way of saying the journey of discovering whether I'm a cochlear implant candidate. I don't know why I didn't think to do this before as it's a central place for everyone to get updates without having to send out a lot of emails, but alas I didn't think it a good idea until now. In future post I'm planning on retracing my steps and writing about the journey from the beginning and also hoping to put up some educational information regarding cochlear implants so it could be better understood by all. For this post I will be giving an update where I am in the process and what the next steps are.
Compared to what I have endured already, we're getting closer to the end of the process. But still having to be patient with the doctors schedules and the fact that I have to wait longer than I would like between appointments. I know that the University of Michigan hospital is a very busy place and has tons of patients always going through the system with steps of their own. It's still hard to be patient though. I'm starting to get very worried that despite everything looking great so far, and the likelihood that I am a candidate is in my favor, that it will turn out that I either won't be a candidate or I will be a candidate but the insurance doesn't approve the surgeries despite appeals.
I'm getting a little ahead of myself. The most recent appointment I had was with the University of Michigan hearing rehabilitation clinic. The first part of the appointment was the re-telling of my story to ensure that she understands everything. When finished with this she began to tell me about the further hearing testing that we were doing that day and how they have come up with ways to alter the tests from a standard patient for me. I am apparently the FIRST patient to come through this clinic, going through the steps of getting a cochlear implant, that is completely hearing in the good ear and not plagued with constant hear ringing. Who would have thought that my good ear having close to perfect hearing would be a problem? First I should explain that up until recently to be a candidate you had to have at least 60% hearing loss in both ears to qualify for the implant. Only recently they started looking at patients with unilateral hearing loss (deaf in one but not both ears). Dr. Telian referred to it as pioneering. But I didn't fully appreciate the level of pioneering that was happening with my case until this appointment. The tests are based on the amount of hearing loss I mentioned earlier, and with that amount of hearing loss in both ears they can generally test one ear at a time despite those with appropriately functioning ears functioning as a couple instead of individually. What I mean by your ears functioning as a couple is as follows: when you hear a sound the ear closer to the sound hears it louder and will note that the sound was coming from a certain direction but your other ear confirms the location with the amount heard from the other ear, so your ears work together to gather information simultaneously in order to respond to the sound immediately and appropriately. Your hearing also works by bone conduction, this means that the sounds waves that are collected in one ear vibrate the bones around it and carries it through vibration to the other ear. So if you had one ear plugged and sound was played in the other ear loud enough, to some degree the plugged ear hears the sound. Thus the testing of just one ear individually creates a challenge. What was done to try to eliminate the hearing ear out of the equation was to put a earpiece in my left ear and play white noise to try to scramble what is managed to be heard coming from the other ear. I won't go into depth of the hearing tests as they aren't the easiest to explain but entailed putting a very strong hearing aid on my deaf ear and playing different pitches of tones and my indicating whether I could hear it. As anticipated I didn't hear a thing. They also took the earpiece out of my good ear and had me listen to and repeat back sentences played to me with people chattering in the background. This concluded the hearing tests.
We then discussed the steps anticipated from that appointment on. The next step was having a procedure done where they insert a needle/electrode through my right ear drum to my auditory nerve to stimulate the nerve and assess the level of function it has. When this is done and they are satisfied with the level of response Dr. Telian will write a letter to my insurance, because it is a special case, to present my case and requesting pre-approval to have cochlear implant surgery. This is where she explained that she is 100% unsure what to expect as again they haven't done this before. There were a few things that were against me, those being that I have never heard out of that ear in the 28 years of my life and the level of response is questionable. Also just the fact that I do have good hearing in my left ear could be against me as they have to decide the appropriateness of this surgery and how much benefit it would give. As she explained all of this to me a feeling of dread landed in my stomach but I'm trying to ignore it because it does not mean that I am not a candidate. She also told me that ii generally could take the insurance company up to 6 weeks to respond to approval or denial of a surgery. Because I'm an unusual case it could take longer and may even mean that the Dr. Telian has to call the insurance company himself and talk to them about my case. Dr. Telian did also tell me at an earlier date that if they do say no the first time that we weren't going to immediately give up and would appeal the decision. Here's hoping the insurance says yes, if my procedure is successful. At the end of the appointment she gave me packets from the 3 cochlear implant devices companies that they work with. She told me that I would be able to pick out my own device! This was a surprise but I sure didn't complain. I have already decided with device I'm choosing but I will talk about that in a later post.
The procedure is scheduled on Friday November 22nd at 3:30pm at the University of Michigan university hospital. I haven't received the complete information on what to expect with the procedure as I am awaiting that information to come in the mail. I do know that they will at least numb my eardrum but it will still be an uncomfortable procedure. I'm assuming they can't sedate me too much as they need me to be awake enough to tell them if I hear anything while my nerve is being stimulated. If the procedure goes well and gives the results that I'm praying for then Dr. Telian will discuss with me about the insurance again and give me information about the surgery and recovery. When I receive insurance approval I will then go back to cochlear hearing rehab clinic to receive further information that I need and to order the device and accessories oh and choose the color! lol :) Purple is not an option but I'm thinking about going with Ruby red.
So here's to being patient and waiting for November 22nd! I'm keeping my toes and fingers crossed and praying that it will turn out in my favor.
Thank you all for being supportive of me up to this point. It's meant a lot that so many people want to be kept informed. This is the most exciting event of my life thus far and I dream of what it's like to have my hearing closer to normal hearing, having sound direction and not having so much trouble with background noise. I look forward to having higher functionality in my job and my personal life. I look forward to learning what hearing in stereo sounds like and waiting to see if I hear things I hadn't been able to hear before. And I look forward to not missing nearly as much in conversations and jokes thus making me less awkward in public. That would be really nice.
I plan to post again soon,
Erica
