Sunday, April 10, 2005

And so it begins

"We are Borg. Resistance is futile. Your life, as you have known it is over."

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This is gonna be a long-assed post, so you might want to make sure you have a cuppa handy and maybe a few nibbles *grin*

First things first - for those who don't know me, I'm a 33 year old deaf Canadian woman. I have postlingual sensorineural deafness stemming from a bout of meningococcal meningitis when I was 9 years old. In laymans terms, this means that the sensory nerves in the cochlea are killed or damaged (in my case from fever.) When these cells die, contact with the hearing nerve fibers is broken and the perception of sound is lost. Since the sensory hair cells of the auditory system are not naturally replaced or repaired, the damage is permanent.

Its been 24 years since I went deaf. I have no real recollection of what happened. One moment I was happily sitting in a chair reading my favorite book (a collection of fairy tales) the next I woke up 3 weeks later from a coma, totally deaf.

Saying this was a bit of a shock is like saying the ocean is a bit wet....

But I adapted...I learned to lipread...learned sign language, went to school, graduated, even went to college for a while

But during all this my fondest wish was to hear again.

Back in the early 1980's, I visited St Paul's Hospital to investigate receiving a Cochlear Implant but at the time it just wasn't a possibility.

Then January 2004, I again started exploring the possibility of being implanted. I knew that technology had improved by leaps and bounds in almost 25 years, and I'd never stopped wishing that I could hear (even to the most remote degree) again. November, 2004 I was contacted by St Paul's again to undergo initial testing. Everything seemed peachy - then in December, Dr Pijl (head of the CI program at St Paul's) contacted me to see if I'd be willing to participate in the clinical trials for the new Cochlear Nucleus System 4. BOY HOWDY, was I ever!!!

So more testing followed plus a MRI which showed my cochlea was healthy and not occified, or turned to bone (a possible side effect that happens in some people).

My implantation was scheduled for January 24th. I'll follow this with an email I sent out to friends and family:

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The surgery went off without a hitch!!!!! It couldn’t have been better. Coming out of anesthesia I was only nauseous for about 20 mins and then everything was awesome - in fact I was doing so well they let me go back to the hotel after my 2 hours of observation post surgery!!! It was just fantastic to be able to spend the night with my Mom at the hotel instead of in the hospital

We came home last night, and other than some aches and pains (general anesthesia always leaves my body feeling like itts been
ran thru a washer wringer twice then ran over by a dump truck for a good measure) I’m doing great. I’m hardly in ANY pain where the surgery was!! In fact since monday I’ve only taken two Tylenol #3’s, its actually not been that bad at ALL!!! I’ve been having a few dizzy spells but my surgeon said to expect those for a week or 2.

Now I’m just taking things day by day while I heal. I go see my ear/nose/throat dr next week to get the stitches removed, then in 4-6 weeks I go back to vancouver for a week and do the switch on. Gotta win the lottery between now and then LOL as I’ll have to stay in a hotel for a week while that happens but it’ll all work out one way or another. I’m soooooooooooo psyched!!

regardless I will be sending regular updates on how it all comes together!

I'm really lucky how well it all was - my mom got to talking with a family whose daughter had her implant done right after mine, and we ran into them the next day at the hotel restaurant and they told me she hadn't been doing very well - reacted violently to the anesthesia and had spent the whole night vomiting and all that. Poor girl.

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An update from February 9th:

Time for a post surgery update.

Everything's been going very well. I've pretty much just been taking it easy and letting things do day to day. I experienced some bad dizzy spells for the first few days following the surgery but other than that everything was fine.

Last Tuesday I had my first post-surgery checkup with my ear/nose/throat Dr and he said that everything looked peachy keen. I was healing nicely and there was no sign of a problem or infection.

But..

On Saturday afternoon I noticed a grape-sized lump in my neck, about 6 inches down from my incision. I went to the drop-in clinic on Sunday and the Dr who checked me out suspected an inflamed lymph node. My mom had called Dr Pijl at St Paul's Hospital on Saturday to let him know - he had requested that we keep him apraised about *ANY* side effects. Apparently there have been more than a few people who have been having some pretty bad side effects such as vomiting and continued dizzyness, and horrendous tinnitus.

Dr Pijl called Monday morning at 8am and asked if we would please come over to Vancouver (I'm on Vancouver Island) that day. So my mom and I hopped on the fast cat and went over to St Paul's hospital. I was quickly escorted in to see the specialist who had been waiting for me, and was given an examination, which included the joyous experience of having an endoscope shoved up my nose and down my throat (sarcasm evident). She told me that there was no swelling, no sign of infection or anything and she also suspected that it was a lymph node problem. As this is the first time they have ever encountered this kind of side effect (or so Dr Pijl told us), it had to be documented, especially considering I'm part of the clinical trials.

So I just have to keep an eye on it- if it starts hurting and/or gets bigger they'll proably do a biopsy and see if they can find out if its anything serious, but they're hoping it goes away on its own.

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(which it has)

And NOW... my activation date is this coming Tuesday (April 12th - 15th). I keep getting asked if I'm getting nervous or excited.... a little bit of both actually, but I'm trying NOT to let myself get into a nervous wreck. Its easier to go in with NO expectations than to go in with them and not have them met. With every implantee its new - they can't predict exactly what I will hear, how MUCH I will hear - its all variable depending on how well I adapt to the stimulations.

I know that for the first while all I will hear will be pings and poppings... and that slowly they
will take on different sounds and frequencies as I learn to understand what the stimulation
to my auditory nerve means. A lot of people seem to think that it will be like flipping a light switch and *bam* I hear 100% again. I WISH! I aint no Jamie Summers (Remember her? The Bionic Woman had bionic hearing.)

Oh no it will be a long process which will require me to study sound, listen to people talking, and trying different speech processing programs with my implant to find out which one works for me the best, which settings are the best etc.

So thats the first post...I will be in Vancouver Tuesday to Friday and will make another longish post next weekend regarding what the activation process was like.

And so it begins.....

Assimiliation in t-minus 2 days and counting.


5 comments:

jenn said...

Dy,

The only candle left in the cottage is blue but it will be lit for you with hopes and best wishes for a most successful assimilation ;)

Love you girlie!
jenn

Anonymous said...

good luck babes you know i cant Wait to beabel to call you on the phone some day =-) just remember the poem when you saw only one set of prints it was there that i carried you know we all are here to catch you hun huggles
pink

Mo said...

Bella...

Can ya hear me now?! ....GREAT!!!
(I'm so damn happy for you)
~Mo

Winter said...

Hi, you may or may not remember me, but I'm Winterain. I've been thinking about you and have been wondering how your doing

Dale said...

Congratulations on your activation!

Nice Blog - I look forward to seeing how well you do!