Wednesday, April 22, 2009

Cochlear Update Round Two!

Hello Folks-

As promised I would keep you guys updated. I had my second round of appt today in STL back at Barnes-Jewish. Cherise was kind enough to come with me to the appointment, and true to our relationship as friends, we of course got lost at the hospital! It was a long two hour drive, but thankfully one of my other good friends, Joe T, texted me to try and be there with me in spirit so thanks for that Joe! Appreciate the support from everyone who texted or left a message.

We got to the hospital about an hour early, but of course, Lucy (myself) and Ethel (Cherise) got lost right as we walked in. Apparantly my room was on the other side of the hospital, so after calling my father a million times, stopping to ask different hospital personals literally 5 times we finally found the room we had to go, 40 minutes later :)

Luckily, I arrived into the office JUST in time to fill out some paperwork, and do all that. They for some reason assigned me an ASL interp, which I specifically told them I didn't need, the poor guy sat in the room making conversation with Cherise barely moving his fingers to sign.

I went into the testing room, and I had a series of test this time WITH my hearing aids on. I of course failed as usual which is what we want! I was really surprised how bad I did. The first sequence of the test was to click a button anytime I heard a sound, I did that.

I had to do this with both hearing aids, one off and the other on and vice versa. Same thing with one word speech, a word would be spoken and I had to speak it outloud what I thought was said. She said I got one more word right out of my right ear over my left ear.

Then the last was to repeat a sentence I thought I heard or interperated, and I know Cherise had so much fun with this. I came up with the most weird sentences, for example I had to say whatever I thought I heard regardless of how strange it was because they were also testing to see how well I could interprate it. One sentence I said was "The bear is fishing in the car" Which we know doesn't happen, but it is what i heard!!!

That was all done, took about one hour and a half. We met back in her office, and she once again reiterated what the surgeon said and that she felt strongly I am definetly eligible for the cochlear implant! So I am now 2 for 2!!! *thumbs up!* I should hope so if I thought I heard "the bear is fishing in the car" I mean honestly!

The audiologist said the next step now is to wait until we hear from the insurance company, once we are contacted regarding that, we can now begin the pre op surgery appointments which involve meeting a few "-ologist" doctors, radiology, and neurologist and whatnot. Each of them I have to meet with and as long as I continue to meet the satisfaction of the CI requirements, they will continue to approve it for me as I meet each doctor. This is simply how the process goes.

However long that takes, I would be scheduled for surgery, most realistically by end of summer, anything sooner would be fantastic but not likely. I do have concerns of it starting right around school time but I frankly have no choice. After the surgery, i will be given 2 weeks or so to heal before I go back to be "turned on". I have to then go back up for 6 weeks, 2 times a week to continue the mapping and such. This is going to be a pain and hard on me, for those who are unfamilair with my location it is a 4 hr round trip drive everytime I go to STL ahhhh, but hopefully if it all works out in the end it is worth it!

Anyhow, that is the updated for now, so to recap, the audiologist (after the surgeon also) has also approved my CI Surgery for go ahead to meet the next doctor, next step is now to wait to hear from the insurance which may take up to a month, who knows. Then after that is to schedule an appt to see radiologist regarding the cat scan I believe.

Thanks again for all the support, and leave a message if you have any questions!


Friday, April 3, 2009

Cochlear Implant Updates

Hello All-

After literally months of talking to people, and meeting with University, I was finally approved so that My Dad’s insurance had agreed to pay for the Cochlear Surgery. So with that good news, the next step was to contact a Doctor in St. Louis. Naturally I bothered Abbie so much about this I probably drove her Blackberry nuts.

The day had come for me to go meet the Doctor in St. Louis, April 2nd, 2009. Yes, the same day Abbie was to get “turned on”. This was not planned. So I couldn’t sleep the night before, and one of my good friends signed online to talk to me and relax me and it made me more jittery. I sent more texts to Abbie trying to get reassurance.

That morning, Thursday I rode up to St. Louis with My dad and Mom in tow. We got to the waiting room and I am just sitting as nervous as heck. Finally they called my name to come inside. I walked in the room. I hadn’t been to a hospital since I had my surgeries YEARS ago.

We wait and chat and the doctor came in. He asked if I did ASL I said no, I speak and use cued speech. He took the wax out of my ears so I felt super cleaned after that process! I love having my ears cleaned for some reason, it tickles me and feels so good! He reviewed my medical history and we told him what happened and when my hearing loss happened. He FINALLY figured out what happened to me that had caused my hearing loss! It was such a relief! I had what was called Lasic during Diuretics. It was a toxin that entered my body to help fluid control and that damaged my nerves.
My mother started crying thinking that she had caused it. Doctor said “nothing you could have done, he would have died if it wasn’t for that, you did fine”. So then he questioned my speech. He was amazed how well I spoke and so clearly, and asked where I learned about it. I mentioned learning cued speech and how well it has helped me to function in the Hearing World, and be able to talk and communicate well with hearing people too on top of lip reading and all. He described it as “spectacular” and was amazed and blown away.

After a couple more minutes he said “Alex, you are 100% a prime candidate for the cochlear implant, in fact if this goes through I’d love to see you go bilateral!” *thud* I nearly fell off the chair. I immediately thought of Abbie who probably would have squealed with delight hearing that news, or though maybe at the moment she’d be hearing it in the form of chipmunks, I digress…
He said we have to do another hearing test which we did later in the afternoon. He said I would probably be able to hear the water falls, horns honking, the wind, birds chirping in the morning. My mom started tearing up, and it was hard not to get flustered to hear this possibly happening for me. He added that he wished he met me when I was a lot younger but he said I will benefit from it now because I am able to communicate orally, and lip read and I am well tuned with hearing aids I would be ok and adjusted.

So with that I went to go take the hearing test. I failed, miserably, but that’s to be expected :) . I was given 50 words on each ear, and got 5 out of 50 right on right side, and 3 out of words on the left side. I am as deaf as I possibly could be! Some more tests were done, and we met back with the doctor. He said up to this point, everything is leading to a promising event of my getting the cochlear implant. He feels very strongly I’d benefit from it so with that, we scheduled another appointment for April 22nd to meet with the Cochlear Implant team and possibly get a CAT Scan also to check out the Cochlear too.
I am very excited at the possibilities of this so far, as soon as I got out of the hospital I became a busy bee texting Abbie a million questions about it all. She has been very helpful in directing me to some websites and people and I already have gotten a package so far to check things out.
I am excited for this possible new journey and cannot wait to see and HEAR the outcome of this all! I hope I soon become a Bionic Man! 