Tuesday, May 17, 2005

Three steps forward, two steps back

Today I had another followup with my audiologist in Vancouver, and it was a dud, with one exception. I had a CI moment while on the shuttle bus I was taking from the ferry to the hospital. When the bus was approaching my stop, the driver said "Okay, St Paul's is next!" and I was sitting at the back of the bus and I was able to understand him!!!

The sucky part:

Now because I'm part of a clinical trial - they have to follow a set protocol for every individual in order to properly document preferences for different Maps (programs for the processors), and most specifically the old Maps used on current CI's versus the new ones for the Cochlear Freedom and the faster speeds regarding how the implant behaves.

Soooooooooooo today they took the program I've been using (the one I showed a preference for out of the original 3 they gave me) and removed it, and gave me 3 entirely new Maps

And letmetellyasomething - THEY SUCK!!!

I told them so today when I got the new maps and Dr Pijil just laughed. He said he felt SOOO bad to have to do this but since its part of the protocol for the study he has to.

I won't even use Programs 1 or 3 - I can't even make out anything with them.

And though with Program 2 things are "loud enough", everything sounds so dull and resonant - like I'm hearing things through a tunnel, and I can't make out speech like with my preferred one.

I'm stuck with these for 3 weeks then I go back for another followup and hopefully I'll get MY MAP back!

Of course I understand, but I told 'em I reserve the right not to like it LOL


I really can't complain - I got the surgery AND the new CI for free - all I have to pay for is my travel to/from vancouver every 2-3 weeks so its well worth it. Its just a bit frustrating becauseI *KNOW* how well things CAN SOUND. And right now I can't get that.

I pray the next 3 weeks go by fast!

Edit: Hope springs eternal. In an effort to convince myself that "It can't really be that bad" I put my favorite ABBA CD on.

It sounded like frogs singing

*sigh* man its gonna be a long 3 weeks

Thursday, May 05, 2005

First follow-up in Vancouver

I had my first follow-up today. It was pretty interesting. We were able to find a way to compensate for the facial nerve stimulation in 2 of the electrodes that were causing it by keeping the intensity down, but upping the gain to compensate. Seems to be working.

They gave me 4 different offshoots of the main program (the one of the three I preferred) for different situations. For example - Dr Pijl took me outside the hospital onto Burrard ave - a NOISY place, and with "program 1a" running it was almost too loud. He then activated Program 1c and in 20 seconds the entire background noise/traffic totally disappeared and all I could hear was his voice. I just totally rocked!!

I had asked him what the DB threshold for my CI was and after we did the programming and re-map (took about an hour and a half) he did an audiometry test to see what was happening.

Pre-ci my hearing loss was 120 - 130 db.

I am now hearing (with the CI) 20 db. Anything over 20 db is termed a "hearing loss"....I'm hearing at NORMAL HEARING LEVELS!!!!!!!!!

I'm completely blown away. So is he. He said he's never seen anybody so far be able to sense sounds that soft. I'm just still in a bit of a daze - each day things just get better and better. Its ONLY been one month, but I've held a conversation with my Mom in the kitchen and me in the living room without a problem!

Its far beyond my wildest dreams. I have to pinch myself to see if its "really real".

And they say it will just keep getting better. Right now Mom's the only one I can really fully understand, but I'm picking up words here and there. I had the radio on the other day and I was able to pick up a lot of two and three-syllable words with ease. I'm LOVING music and relearning all my old favorite songs.

I'll add more soon - right now I'm just kinda overwhelmed again...Its like winning the lottery twice in a row!