Monday, October 17, 2005

More tweaks, more experiences

Two weeks ago I went back to Vancouver for another "tweak" of my map. If you've been following my progress you know that I've been having some difficulties with the higher-pitched sounds and those corresponding electrodes. First they caused a stimulation bleed-through which manifested itself in an eye twitch (very uncomfortable) so those offending electrodes ( 4, 5,6,7,8) were "switched off" at my initial activation with the hopes we'd find a way to re-add them to my maps at a later date.

In August we discovered that upon activation, those eletrodes no longer caused stimulation. Reasoning behind this is mixed - it could be that I've gotten more used to stimulation, it could be that cushioning proteins have wrapped around the electrodes, effectively nullifying the bleed, it could be a combination of many things - regardless, I no longer experienced the eye twitching so Dr Pijl re-added the missing 5 to the current Map I chose (ADRO), and the experience was NOT what I had expected.

With the 5 electrodes missing - I guess I assumed that once they were added in, there would be even more sound clarity but that definitely wasn't the case. I found that the electrodes - because they amplify the higher pitches/spectrum instead of making speech clearer they made it harder to understand. Voices sounded high pitched, inconsistant (think talking after you've inhaled helium.) I was a bit befuddled and a bit surprised, it could have been that I became so used to NOT having those electrodes stimulated for the 4 months previous that having those readded put everything "out of whack", so to speak.

So when I returned for another follow-up, I had Cindy (the other audie) remove all but electrode 7 (for some reason - don't ask me why, we tried activating only electrode 8 and it caused the eye twitch again!!! Go figure. Fortunatly that didn't happen with electrode 7 so we decided to stick with just that one.)

So now I've had my preferred map PLUS electrode 7 and its been wonderful! I actually like it better than the old map - maybe its just the added boost of that ONE higher pitched sound but it seems to cap everything off. There were some people (like my father or others with very deep voices) who I had trouble understanding with the older map, ad with electrode 7 readded I'm finding understanding their speech is MUCH easier. I have a friend online who I liken to Grizzly Adams - he has an INCREDIBLY deep resonating voice. We'd tried to talk over the phone in August without much success - but we were able to talk with the new tweak so I'm very happy!

Aside from speech being clearer, I'm loving music even more. The other day for the first time I experienced being "moved to tears" by the sound of someone singing. It was Josh Groban singing "Home to Stay." Oh wow what an amazing voice he has!!! I've also been re-discovering many songs I remember hearing back before I went deaf. Buddy Holly, The Beatles, The Statler Brothers, The Mamas and the Papa's, John Denver, even Harry Belafonte to name a few. As wonderful as it is to be able to understand speech, the fact that my CI has brought music back into my life is the silver lining!!!

There was a period when I lived in the US with my ex-husband, that I went three years without any sound ( my hearing aids broke and circumstances prevented me from getting them fixed.) Three years of *total* unbroken silence. I didn't mind.

Now, I find that I don't LIKE the silence anymore. When I have my CI on, and its quiet, I find myself playing music in the background just to have somthing "there" (I have a preference for Hagood Hardy's symphony music.) Its such a change from accepting the silence I lived in before, and now trying to do anything I can to AVOID that silence again. The only time I don't mind it is when I sleep.

I will soon be receiving some new "toys" from Cochlear - some adaptors so that I can use my CI directly with a walkman/CD player or even my computer. That's going to be another fun experience that I'll write about.

On another tangent - I've been experiencing some "design flaws" with my processor. First problem was the digital display which normally shows which program I am using started to malfunction and now there is NO display whatsoever. Then the other day the protective latex
"sheath" which covers the wire bundle between the processor and transmitter split. I've temporarily fixed that with electricians tape, and will be receiving a replacement soon. I hope that they are able to design something sturdier for the future - I've only been using this processor a couple months.