Thursday, August 25, 2005

Another day- another experience

[begin rant]
Ugh it seems spammers have found my blog. Its bad enough that I get spam in my instant messages and spam in my email, but spam ON MY BLOG???? *grrrr*
[end rant]

Now on with the show.... seems that not a day goes by that I don't experience yet another 'CI' moment. Today it was understanding my Mom and a friend of hers having a conversation while we were in the car - Mom had her back to me and her friend was standing outside the car so I couldn't see either of them, but I HEARD EVERY WORD!

I went back to see Dr Pijl last Monday and we re-added my elusive 5 electrodes. I was very excited about this - and we were in for a bit of a shock as well. If you have read my previous posts - when my CI was first activated in April we experienced facial nerve stimulation feedback from 5 of my electrodes (#'s 15 - 19) which caused my right eye to twitch every time I heard a sound. Since there was no way to work around the feedback within the protocols of the Freedom study, we opted to simply switch those 5 off until we had more leeway. That was Monday - and imagine our surprise when we switched them ON, without doing any tweaking or manipulation and *there was no longer any feedback!!!*

Dr Pijl isn't sure WHY it just stopped happening on its own - but he suspects it could be that my cochlea itself has something to do with it - as the cochlea puts down some proteins around the implant - I guess it might have a protective or "buffering" effect but at any rate there is absolutly NO feeback among any of the electrodes anymore. So he was able to give me a full re-map (I also found out I'm using ADRO.)

According to the New Jersey University of Medicine , ADRO (short for Adaptive Dynamic Range Optimization) is "designed to automatically adjust sound levels to deliver an ideal balance of clarity and comfort. Unlike other speech processors that lower all sounds when entering a loud environment, ADRO uses incredibly fast signal rates to adjust sound levels across the Nucleus Freedom’s 22 channels individually. The channels representing quiet sounds are enhanced, while the loud sounds are softened, providing the user with a comfortable listening level in changing environments. This allows users to enjoy environments such as theme parks; participate in conversations at busy intersections; and better appreciate music."

More information on ADRO is also available at the COCHLEAR website

NOW came the surprise - even after a week of having the new map - I DON'T LIKE IT!

I am a bit surprised - I expected the tonal range would be more dynamic, more "whole" but I have found that the addition of my missing electrodes - all on the higher frequency end of the electrode array, make everybody sound like they are Pee Wee Herman! Sounds are tinny, whiny, and almost impossible to understand!!! The only circumstances where I have found I prefer the new map is watching television. I can't use it on the phone, and I can't understand regular speech as clearly either.

I'm not sure WHY ... could it be that after 4 months of NOT having those electrodes I've become used to sound "this way" as opposed to with the higher pitched sounds? I'm not sure - I DO know that even with my hearing aids I always preferred the lower sound spectrum - I was able to discern sounds better at lower pitches. I will keep trying with the new map, and seeing if perhaps like some of the others there is a "sweet spot" timeframe where everything will seem to come together (with the other maps it was in the 4 - 5 week range) but I find I'm switching back to my OLD map more and more (thank goodness I asked to have it left on my processor just in case I didn't like the remap!)

I'm thinking that what I might end up doing at my next meeting with Dr Pijl is asking him to just leave 1 or 2 of the electrodes (probably # 15 and 16) and remove the others and see if that doesn't get rid of the "whiny" aspect of voices. With the new remap even men's voices sound uncommonly "feminine" and I don't like it at all.

I can't help but wonder sometimes - since I don't seem to LIKE how the "full spectrum" of sound is - does that mean that MY concept of what the world sounds like is skewed? Or is MY concept right and the new electrodes are stimulating my nerves to a point where its being percieved as unnatural? And if that is the case - just HOW does one decide whether or not one is hearing something "normally" or not? If I turn on my ABBA CD and listen to it with my old (preffered) map and understand it perfectly, does that mean that I AM hearing it correctly compared to a normal hearing person or does it mean that my perspective is skewed BUT it "works for me"? Just WHAT iS "NORMAL" hearing anyway? Its enough to give you a headache!

Monday, August 01, 2005

Ahh the music!

Sorry for not posting an update for over a month - I've just been so busy lately (particularly with helping my parents renovate their bathroom) that I've been lax.

Things have been pretty good for the last month. I went back to Vancouver 2 weeks ago and Dr Pijl put me back through the word and sentence recognition tests (still wonderful results!) and then removed all my maps except for the "main" two that I've
been using over the last month. No "whisper" settings or background noise cancellation this time, just the two main ones so that I can switch back and forth readily between them and see which one I really prefer. Its making comparisons MUCH easier because its kind of hard to make an informed decision when you wear one map for 6 weeks THEN switch to another.

I have my preference already - though when I go back this coming Tuesday I want him to tweak it a bit because I KNOW it can be better. Because I had previously been using the map I don't care for, before going thru a recalibration of my preferred map, I "over estimated" some of the frequencies and as a result the higher frequencies are too loud and often are overemphasized and making some voice recognition more difficult (especially when I'm using the phone.) I'll get him to
lower the high frequencies for me and we are HOPING that this time we can re-add in those 5 elusive electrodes that caused facial nerve bleed-through since we were able to figure out a way to eliminate the eye twitching by moving the "ground" closer to those electrodes. We'll see what happens. From now on we won't be as grounded and will have more freedom to play around with the maps and not have to worry so much about the study protocols since I'll have made my final map decision (for the time being at least.)

I haven't ventured to talk to anybody else on the phone except my family members and my boyfriend....I know I need to try but there's a bit of nervousness as well, the "well what if I CAN'T understand them?" worries. In retrospect I shouldn't worry, after all its only been (almost) 4 months since I had my implant activated and I've been using the phone for the last two! If somebody had told me that I'd be using a phone every day talking to my family/friends within 2 months of activation I'd have thought they had a screw lose. But its a REALITY. It still blows me away!

On Sunday my family and I went down to Coombs to the Bluegrass Festival. Man was that an experience I will NEVER forget!

Last year we went as well - and I only had my hearing aids. I went mainly because it was nice to get out, walk around, enjoy the fresh air, play with my baby nephew, but the music was totally lost on me - it was just a mish mashed jumble of sounds and a lot of them I couldn't even discern (like violins and fiddles).

Well talk about a change!! With my CI it was just AMAZING!! Now I was told beforehand that there would be a chance I wouldn't be able to enjoy/appreciate music with my CI, but I'm pretty positive that part of the reason WHY I do is because I was exposed to so much music before I went deaf. There was ALWAYS music playing in the house. Dad played his guitar and an omni chord. Grandma had her guitar and her organ. My brother played guitar and trumpet and I had been learning the guitar myself and had just started organ lessons with I already had the "appreciation" there, deep inside albeit hibernating. And most of the music I listened to was bluegrass/country.

From the moment we arrived, I just sat in the stands and grinned my fool head off. It was AMAZING! I could hear every instrument. The guitars, the fiddles, the banjos and ukulele's the bass guitars and violins. It was AWESOME!!!

The only difficulty I had was understanding the songs - which was contributed in part by the PA system which seemed to distort the voices (My brother told me not to worry because he said even HE had trouble understanding some of the songs and he has perfect hearing.) I've found that song recognition depends on whether or not I've taught myself the lyrics first. Since people SING much differently than they speak, understanding the words to a song I've never heard before is to me like trying to understand a different language. Words are drawn out, or emphasized differently than normal speech and while I can often get a word "here and there," unless I have the words there to follow along with or I've already memorized them, its very difficult.

I totally fell in love with fiddle playing. One girl who was there, Robyn Jesson was absolutely amazing and I bought her CD and I've been playing it over and over - its just such an amazing sound! I'm going to search out some more fiddle music later this week - I think one of the reasons I like it so much is that with my CI I can hear each specific note - no longer is music just a muddled mishmash of jumbled sounds.

I'll end this here, and make another post in about a week regarding how the follow up went and if we were able to re-add the missing 5 electrodes and how that's affected how things sound.