Re: malformed cochleas

[Guest guest]

Sheree,

Your clinic is not wrong, just cautious. You may well exceed their

expectations...and yours. But remember, you are doing this for you, not

them.

*---* *---* *---* *---* *---*

A bad day is ...

Walking a tightrope with gum on one shoe.

& Dreamer Doll (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/

[Guest guest]

Hi Sheree!

Wasn't that some feeling to finally know why you are profoundly

deaf? I grew up believing that water on the brain was the sole

cause of my hearing loss; but at age 39 when I finally went to my CI

Candidacy evaluation, my ENT told me that wasn't the whole reason.

He asked me if I ever heard of Goldenhaar Syndrome. When I said no

and my Dad confirmed that no one had ever mentioned it, he

said, " Well, you have all the hallmarks of it except for deformed

outer ears. " It was like a big relief to finally know why I am

the way I am...poor vision, uneven skeletal features, high mouth

roof, and profound hearing loss. It was like a sense of closure to

finally know why I am so different than my 5 brothers and 3

sisters.

This is an exciting time for you and everyone close to you. The

implant motto is high hopes, low expectations. Of course back

during my CI Candidacy I thought it was high hopes no expectations

so my hopes were high and I wasn't expecting anything more than what

I had since my ENT was not giving any guarantees of what I might

hear. Like yours, he told me that it would most likely make

lipreading easier. He would not promise me that I would

understand anything I heard or tell me what I would be capapble of

hearing. They can't do that. Everyone is different. I am glad

I didn't go in with any expectations. But, I had high hopes. I

just wanted it to be better than what I had with a hearing aid. I

was muffled all my life until I lost that last little of aidable

residual hearing in 2002.

And boy was I ever in for the surprise of my life! My hook up

day was one happy day as I sat and concentrated on the first beep I

needed to hear. It was LOUD! I was so worried I wouldn't hear

it; but I jumped out of my seat when I did. I never heard a beep so

clearly before! My sister cried. I was too stunned to react.

I was thrilled to hear environmental sounds from hook up day on.

They fascinate me. I was amazed to hear the voices of my family;

but I couldn't understand them without lipreading. With each

mapping the voices got more and more familiar and I could tell who

was talking. It took 3 months for speech discrimination to kick in

for me. And what a time that was! It was amazing the first time

I heard my name being called behind my back from just a few feet

away. I never ever could respond to my name being called from

behind me until then and I was 40 years old jumping up and down

about hearing my name behind my back.

As for the phone, I have come a long way with the phone. I can

have decent phone converastions with people I know. I shy away from

speaking to people I don't know. To be honest, I am just not much

of a phone person. I much rather talk to people in person or use

email.

As for test results, I was 0% in the testing at the time of my

CI Candidacy and I have not been in the testing booth since then.

I do not want to know what my hearing score is today. I much rather

go with real life experience and I can tell you that I am in awe

with what my CI has given me. I'm back at work now in a career I

thought was never going to get off the ground. I am an elementary

Reading Assistant and I love my job! The kids and my co-workers are

fantastic. They are so understanding about how they should speak to

me face to face so I can see their lips if I need to lipread them.

I spent all my life lipreading and that's what I am used to but I am

finding that I am not lipreading as much these days since I am

actually hearing them. The CI really does make lipreading so much

easier. I am really glad I got implanted! It's better than

any hearing aid I have ever worn!

Best wishes to you on your journey out of muffleness. May your

surgery be successful and your recovery smooth. Keep us posted on

how it's going for you and keep your questions and concerns

coming.

Good luck to you!

Patti

Surgery Day 11/25/02 (What A Day!)

Hook Up Day BWP 1/2/03 (A Happy Day!)

3G 1/31/03 (An Even Happier Day!)

[Guest guest]

Hi,

Sorry its taken so long to respond to this posting, life has been difficult

lately.

I have a malformed cochlea and it was not found until I was preparing to have

my implant done. The doctor said it was a miracle that I was ever able to hear.

He told me it might not be possible to connect every electrode but he would do

his best.

His best was better than I ever expected, all the electrodes were attached and

they all work. It is wonderful!! I have had my implant for about 9 years now

and loving every minute of it. Hearing music after 20 years of not being able

to is fantastic. Although I drive my kids nuts cuz I love the " oldies "

Please email me if you want further information.

(in Oregon)

" Be the change you wish to see in the world " Gandhi

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