Friday, April 15, 2005

There is no sunshine today

I wrote this out last night, but forgot to post it here (just posted it to a message board for CI users then went to sleep)

I thought I'd add a copy here.

I'll extend on it later with more personal viewpoints but this is the gist of it :)

Love you all


Subject line will be explained as you read :)

LONG ASSED POST ALERT! You've been warned!

Soooooooooo We got home this evening, a full day earlier than expected. (By the way this is the first time typing on my keyboard while wearing my CI and its a loud-assed kb!)


So we get there at 9am Tuesday morning, and Dr Pijl is waiting for us. First he explains the functions of the CI itself (how to turn it on/off how to insert the batteries, how to switch between the different programs - it can hold 4 - and stuff like that)

Then he puts it on me, hooked up to his computer - no sound yet as its not running a program yet...he loads Program 1 and says he's going to give me a tone....tell him if I can hear it

I almost fall outta my f*ckin chair!! (pardon the language)

I was like 'HOLY **** WHAT WAS THAT Huh??"

(Hey Mikey - she likes it!)

He looked at me and grinned - Mom's white faced. She said the look of shock on my face was unbelievable (she got a pic and I'll scan it when she gets the film developed). We go through all the electrodes (22) and then he turns the full program on.

the only word was WOW...... unbelievable. He started talking to me, and let me tell you, Dr Pijl is VERY VERY difficult to lipread - at best I usualy understood 30% of what he was saying - the rest is just pieced together from experience with regards to word placement and sentence structure.


every dang word

I still had to lipread but the sound of his voice came through so *clearly* that understanding him was easy.

The rest of the morning was kind of a blur, we went through the first program again, with him asking me about loudness and comfort. Taking a break for 5 min to walk down the hallway (I could hear people talking - though not exactly understand them, I could hear their vocal tones - ... down the hallway - before approaching the secretary's office I could hear her typing...thru the
door, more people talking.... shoes clicking on the floor...a door opening and closing.... a wheelchair going over the tiles.... we went outside.... WOW... vehicles passing, a seagull screaming on the roof.... overwhelming!.

Back inside he adds the second program (I use 3 programs, which are the original System 3 program, a High-Res program, and the brand new one thats specific to the trials for the Nucleus System 4

unit only. I DO NOT know which is which, just programs 1 2 and 3 so that I can give a preference free from any influence) The second program sounds a bit different...sounds are more muted, more resonant. We notice that I started to get an eye-twitch with the second program so we ran thru each of the 22 electrodes and discovered that there were 5 that were causing the problem.

Dr Pijl thinks that the bones surrounding my cochlea may not be completely solid, and may be allowing a bit of the electrical pulses to bleed over to the facial nerve, which has happened to people in the past. So he turns off those 5 electrodes, they can be re-added later in the program when they find a way to work around the problem, but for now I have 17 working electrodes.

Its hard to put everything together....but I was hearing things I'd never heard (or remembered hearing) before. Sounds were clear. Crisp. Individual. Voices were resonant, pleasant sounding.

We broke for lunch - Mom and I went to the news stand and she wanted a bag of chips and when she picked them up I was like 'WOW!! That sounds neat!" because I could hear the crinkling of the celophane. With my hearing aid it would just sound like a high pitched rustle - but the sound I was hearing was 1000x different.

Then he put me through some tests - where he would play different beeps and I'd have to count them and tell him how many I heard. Wasn't very difficult - he told me that most of people can NOT differentiate between the tones on the first day. I was getting almost every one right.

We began to suspect that perhaps the fact that I wore hearing aids for 23 years kept my auditory nerve stimulated to the point that it was kept in a state of readyness and once the CI activated it was just a matter of understanding and for some reason I was getting clarity and distinguishing the different tones without a problem. Dr Pijl was pretty amazed.

We did that for both programs and that took most of the day, plus trying to work around the 5 problem electrodes and see if there was a way to re-add them back without causing the eye tick but we couldn't because at a level where the eye stopped twitching, the sounds were too soft for me to really understand. We kept increasing the sound for both programs as after about an hour,

a level which initially would be almost TOO intense would seem too soft, as I learned to adjust to the stimulation. Dr Pijl got a kick out of how I kept asking him if we could turn them up more *grin*

So at around 3pm we called it a day, and went back to the hotel. I had a nap, then Mom and I watched some TV - and I found out that during some commercials that weren't closed captioned, I was understanding what the actors were saying!

Mom and I just spent the evening going over what had happened and talking and playing cards. I loved how they sounded when shuffled.

Wednesday morning we worked on the third program for most of the morning then equalizing all the elctrodes and optimizing the programs, more counting, telling which of 5 tones were softer or louder, making it all balanced out, more breaks to listen to this and that outside, etc

Then after lunch, we meet with Cindy, the audiologist. She's a sweetheart - she's the one who did all my preliminary testing in November and December prior to my being approved for my CI.

So... she says we are going to try some tests...word recognition etc just to see if the CI is picking things up correctly.

She gives me a list with words on it....three words to a line. She wants me to pick out which word she is saying without lipreading or looking at her we start... I get one right...then another...then another... 3/4 of the way down the page, she takes the paper out of my hand "well THAT'S too easy for you!"

So we move onto a different test...she wants me to follow along while she reads a sentence and pick out 1 of 2 different words for example "Joe went to see/saw a cat" (ignore proper english)She'd say one of the 2 words and I'd have to tell if she said see or saw

3/4 of the way down THAT list..."too easy"...

So she hands me another paper with groups of 4 sentences.

Now she is going to read a sentence and I have to pick out what it was out of the 4 listed in each group on the page.

So she says the first and I'm reading the paper...easy to discern because I can put the sound together with what I was reading "The Goldfish is in the bowl".

She gets ready to say the 2nd sentence...and on a whim, I just turn my head to the left and DON'T look at the paper...I closed my eyes...and she said the sentence. Without opening my eyes I repeated what I thought I heard.

Then looked at the paper...and I was right.

"There is no sunshine today"

That was the first full sentence I understood in 24 years.

24 years - and I understood it completely.

And we all cried. Oh man.... thats when it really hit home.

So we went through the rest of the list...without me reading it...and I got them all right.

Then she went on to "categorical sentences" like what you'd hear in the morning

"how are you today?"
"Would you like eggs for breakfast?"
"lets have a cup of coffee"
"good morning"
"did you sleep well?"

And I got all but the "lets" in "lets have a cup of coffee"

mindblowing doesn't BEGIN to describe how I felt. I was crying. Mom was crying, Cindy was was just so dang emotional.

Then she starts explaining how I'll continue to increase my ability to understand language, how with some people it will probably be very easy to understand, for others I may always have to lipread them a little. (lisps, accets etc play a part too) She then asked me if I wanted to try listening on the phone to her answering machine message and see if I could understand

she calls her office....and I get out "Helo, You have reached Cindy's answering service"....then some more words, it was a bit garbled after that..... then "If you would like to leave a message I'll get back to you as soon as possible. Thanks for calling".

Again.. more astonishment. She went back to her office and had me call her...and we had a converstation on the phone!!!!

Now mind you - she's a audiologist. She knows how to enunciate properly to make it easier for hard of hearing people to understand her, and while I could not understand every word, I was able to understand most. She recited days of the week on the phone and asked me to repeat them and I got all correct except Tuesday and Thursday - the two T words were difficult to separate.

Cindy said there are people who have had their CI'S for 6 months who couldn't do what I did on the 2nd day. Mindblowing huh? That was the end of day 2 - what a way to end it on a high note!!!!

Dr Pijl had said he thought that we'd probably be able to leave thursday afternoon because I was just breezing through all the tests without a problem.

Thursday morning I talk to the surgeon who did the implant itself, Dr Westerberg. He's even harder to lipread than Dr Pijl as he mumbles - but I understood *EVERY SINGLE WORD HE SAID!*

That morning we fine- tuned the programs some more, did some computer analyzing to test the functioning of each electrode and chart it etc - the testing is lengthy because I have to listen for different tones, compare them, listen to cadences etc...its kind of boring lol but serves a purpose.

I'd already told Dr Pijl that I was favoring program #1 and he seems happy with that. The sound with this program is simply clearer, crisper, more realistic, and voices are easier to understand.

We started doign some tests that normally are'nt done until the follow ups, but because I was already understanding full sentences spoken by Cindy and stuff like that, he said we might as well go ahead with some of the stuff - just more testing regaring the different programs and how they compared to each other.

And then it was time to go home. I go back in 3 weeks, and then every 2 weeks thereafter for 1/2 a day and once a month for a full day. Next time I go back I will pick which of the 3 programs I like best (I already know it will be #1) then what they will do is then add 4 programs that are variations

of #1 to use in different settings (where sounds are super soft and I want more clarity, in a public setting where I want to eliminate backrgound noise more, 1 on 1 conversations etc)

We got home at 7pm tonight and its just been the most amazing experience of my life, and it didn't stop there!

i was told by Dr Pijl that when it came to music, music appreciation was NOT a universal appreciation among CI recipents. He said some learn to understand it over time, some never do, some simply don't like the sound at all as the programs are more geared towards understanding SPEECH than understanding music and/or singing.

But the stubborn mule in me doesn't listen very well.

So we get home and the first thing I ask my Dad to do, is put in a CD soundtrack from the movie "Oh Brother, Where Art Thou?" and play "I'll Fly Away" just to see if I could understand it. So he turns it on....and there the words are...clear...and I begin singing along with the song.

Mom and Dad started crying.

So...its been an *amazingly* successful switch-on to say the least. And they tell me it will just continue to get better and better. They say that even after 5 years, some CI recipents are STILL learning and finding new things and understanding what they hear better, so I have room for a LOT more....and I can't wait!!!!

This might have jumped around a bit - if you have any questions just ask and I'll elaborate. I'm sure I missed some points and I'll remember them in the morning, its just that my mind is still a jumble of all these experiences. I tried to put it down as closely as I remembered...

Its sure nice to hear again

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