Re: Re: Pam/Speech distinction

[Guest guest]

Jackie, no problem at all! I'm honored that you took the time to explain so

clearly..

I hope very much to have *realistic expectations* and so right now I'm trying

to determine exactly *what is realistic?*

I'm pleased to know that hardly anyone just winds up with a CI that doesn't

work at all and leaves them totally without any hearing when before that they

had at least a shred of hearing.

When I take my hearing aid out I am as if encased in a stone.. but when I put

my hearing aid in my ear, it is like opening a window and I am again attached

in some small way to the world of sound. It is better than living in that

stone and it also seems to help with my balance and my safety (crossing streets

etc).

I need to know what the chances are that I would wind up with less connection

to the world than before, or less balance or with an unfunctioning facial

nerve. I am the only one this is happening to.. as each person has their own

individualized results.

To me this is all part of having realistic expectations, and then deciding to

take a leap of faith and go for it! My magical and mystical thinking tells

me that the more I know and am aware of, the more those negative things *won't*

happen and only the positive results will be mine.

Thanks again for your wonderful explanation!

Pam

In a message dated 4/30/2004 9:01:22 AM Alaskan Daylight Time,

Flashwun@... writes:

> So - I guess I want you to know that you must go into this with

> realistic expectations. I want you to have the opportunity to do your best.

> Chances

> are you will do much better than you are doing now. But please know that

> outcomes are different - there is no guarentee that speech discrimination

> without

> lipreading will come, yet none that says it won't. I know - it's a

> difficult

> decision. Again, if sneezing, mooing and a train all sound the same - and

> you

> have no discrimination - what do you have to lose?

> I'm sorry this got so wordy - I don't want to discourage anyone, so

> please feel free to ask any other questions - I am in the " pro-CI " camp,

> despite

> not having been turned into super CI Hearing Maven! LOL

> <smile> Jackie (Flash)

[Guest guest]

hi jackie

i really enjoyed reading your very honest post. i have read so many

*miraculous hearing * upon activation that it really starts to sound like the

norm for

ci folks, that the vast majority are successful at hearing without lipreading

from day one, hearing on the phone, and that it did nt take hard work and

patience, etc

so i am very glad to read your honest and blunt post that it isn 't alwys so.

at the same time, you do say that you have no regrets with a ci, that it

does open up and improve your world, and that it is still far better and easier

than just hearing aids only. and most importantly it does help lipreading. i

agree!

its great when we can hear from a variety of experiences and not just the top

five percent " high success " cases. its such a relief and encouraging.

how long have you had your ci? for some it may take a few years to get the

maximum out of the ci. thanks!!

joni

preling

HU 4-04

[Guest guest]

Hi Joni-- Here is a prelingual who did not have a " star " hookup 2 years ago

this coming July with the left CI. I worked at it very hard during AV rehab.

When we tested it at 3 months my sentences recognition was at 25%, I was

thrilled because it was only at 14% bilaterally pre ci and I didnt think that it

would be up there that fast considering that I was prelingual. At 6 months it

jumped to 40% and at one year it was 87%. That was the last time my left year

was tested. I think right now it is between that number and in the low 90%s but

I am thrilled with it because it shows that I have come a long way since that

crazy day on my hook up day 2 years ago. My right CI has a different story

however. I am starting all over with it. It will be reactivated on May 6 & 7th

after being reimplanted on April 14th. But it was tested in the OR with nice

responses so I have faith in it also. It was at 40% in sentences recongition at

3months. We could not do any further testing because of the problems that I had

with it. I do know that at 3 months I was 86% bilaterally as to 97% at 10 post

hook up last year. It shows that with work and determination that one can do

well and succeed in a different way.

--

Snoopy

bilateral

RI

[Guest guest]

In terms of hearing wih an implant, I'd say the full range of possibility is

what is realistic: from increased environmental awareness all the way to

speech without lipreading even in noise (although nothing is ALL the time).

In a message dated 4/30/2004 1:55:41 PM Eastern Standard Time,

plsav42@... writes:

I hope very much to have *realistic expectations* and so right now I'm trying

to determine exactly *what is realistic

[Guest guest]

Hi Joni & Jackie.. I agree with you on this Joni. I am still waiting for

the ci to make 'lip reading' easier. Even though I am able to understand

the cd player with an audio book, real people with real voices are still

very hard. The sound alone distracts me so much sometimes that I can't

concentrate on the lipreading. I too would love to be one of those success

stories, but need to keep my expectations real, knowing that it might take

me a few years before I realize that I don't need to lip read while listening.

susan & hobbes

michigan

At 03:20 PM 4/30/2004 -0400, you wrote:

>hi jackie

>

>i really enjoyed reading your very honest post. i have read so many

>*miraculous hearing * upon activation that it really starts to sound like

>the norm for

>ci folks, that the vast majority are successful at hearing without lipreading

>from day one, hearing on the phone, and that it did nt take hard work and

>patience, etc

>

>so i am very glad to read your honest and blunt post that it isn 't alwys so.

>at the same time, you do say that you have no regrets with a ci, that it

>does open up and improve your world, and that it is still far better and

>easier

>than just hearing aids only. and most importantly it does help lipreading. i

>agree!

>

>its great when we can hear from a variety of experiences and not just the top

>five percent " high success " cases. its such a relief and encouraging.

>

>how long have you had your ci? for some it may take a few years to get the

>maximum out of the ci. thanks!!

>joni

>preling

>HU 4-04

>