Re:Evil/brother's hook-up/expectations

[Guest guest]

Hello, Evil, and Everyone,

I was so pleased to hear how well you've been doing with your CI. I

hope it continues to improve for you.

With such an excellent, early outcome, it is difficult to accept that

your brother is not faring as well, or as quickly, as you have. Actually, you

are the exception rather than the rule. Your brother's progress is more

common. Squealling noises, unfamiliar sound, indistinct voices: these are all

" par for the course " for many of us in the very early stages of hook-up.

Learning to listen and distinquish sound, then voices, can be a slow and

arduous

process for many CI implantees. The time between mappings is intended to

help one become tolerant of new and louder sound. With each mapping, sound

tends to get a little better. This could be that your brain learns to tolerate

more sound, and/or learns to recognize and remember what those sounds are. (I

was hearing geese migrating above, but couldn't locate or recognize where it

was coming from or what it was. My husband continually pointed the sound

out to me and identified it, and eventually my brain remembered it. Now I look

up and smile, but still think they sound awful! LOL)

For those " newbies " and potential implantees: (WARNING: Read the

following ONLY if you want to know of us " average " CI users.) My story is one

you hear less of, but is, actually, more common than those who have immediate

success with voice distinction upon hook-up.

I am coming up on two years implanted this October, and turned on

early Nov. My " worst " ear was implanted. (heard some noise, but no

discrimination at all) I am hearing much more sound than I was before the

implant. I

did do auditory/verbal therapy weekly for @ a year and continue to go

periodically. I am post - lingual and did not need any speech rehabilitation,

so I

would say that the A/V therapy is even more important for those who are

pre-lingual. Real life situations continue to be the best practice. I do NOT

have

voice discrimination with my CI alone without lip reading. I have @ 10%

speech discrimination in my unplanted ear WITH a hearing aid. I have used it

since I was hooked up. I tried what was recommended at the time: no hearing

aid to help adjust to the CI more quickly. Baloney! I couldn't understand one

blessed thing without it. Today I'm hearing of more and more audiologists

recommending that if a hearing aid will help, why not?? It may even help

train the CI and the brain to work together! (but this is still in the

researching stage)

Has this been a negative experience? Not at all! In fact, I would do

it again in a second. With no reasonable recognition of sound or voice in my

implanted ear pre-surgery, I had nothing to lose. Had I not done it , I'd

always be wondering, might the CI have helped? Well, it HAS helped. I can

hear sound that was impossible before. One on one conversations are better and

easier. Noisy situations are still quite a challenge. Each new map I get

with my incredible audiologist is a little better than the one before. Many

times it is more " different " than better, but being able to try new maps,

with the amazing numbers of possibilities, allows me to continue to have hope

that this WILL get even better. Is this what the doctors prepared me to

expect? Yes, it is. Is it as good as I had hoped, realistic or otherwise?

Nope!

But that is MY problem. There are no guarentees going into this, or for

that matter, any other surgery. But the opportunity, to hear better, is too

good to pass up. It is NOT perfect. But it IS, for most of us, better than

what we started with. The " battle cry " for us CI implantees is, " high hopes,

low expectations " . I can't implore upon you to take this view seriously and

understand that it is true.

I hesitated to post this message. I do not want to discourage anyone

from obtaining a CI if their doctors and testing show you may benefit. Quite

the opposite! But we see so many amazing stories of hearing with the CI on

this, and other forums, that I felt it important to tell my story, one which,

I believe, is probably more common, though less " reported " . I, also, work

with many children who are implanted. Many, especially those implanted before

toddlerhood, do extremely well. Others, like me, continue the daily struggle

to hear better, though definately benefit from this amazing technology.

I hope this answers, and honestly, some of your questions as to how

many different degrees of success each individual obtains. And if you are

hearing more, or lipreading easier, it is ALL successful progress. Please feel

free to e-mail me here, or in private (just put CI in the subject line so I

don't delete you!), if you have any questions or comments.

And to all of you, much good luck in your quest for better hearing.

Jackie (Flash)

[Guest guest]

In a message dated 9/26/2004 4:58:02 AM Pacific Daylight Time,

Flashwun@... writes:

I would say that the A/V therapy is even more important for those who are

pre-lingual.

I agree! Being pre-lingual, I say it is very important, many of us went 30,

40, 50, and even more years without ever hearning sounds, the therapy HELPS

us learn it.

Lee

[Guest guest]

> ......

>... Learning to listen and distinquish sound, then voices, can be a

slow and arduous

> process for many CI implantees. .............................

For those " newbies " and potential implantees: (WARNING: Read the

> following ONLY if you want to know of us " average " CI users.) My

story is one

> you hear less of, but is, actually, more common than those who

have immediate

> success with voice distinction upon hook-up.

--------------------------------------------------------------------

Hi Jackie,

I want to thank you for sharing your experience as it is just as

vital, or even more vital, than all the nice success stories.

Everyone deserves to hear all the possible outcomes. The

group was my second group to sign up with; originally, I joined

the " Problem CI " group to learn what problems might be encountered

with an implant. I had already decided I would have a CI implant but

I still wanted to know what the possibilities are. Your story

outlines exactly what I expect my experience will be. Yes, I have

high hopes but my expectations are very low. I do expect to learn

speech discrimination.....but not right away, I know it may be years

before I can do that. I was born with a moderate hearing loss and

wore my first hearing aid at 10 years old (none were available

earlier that would help me). I've worn hearing aids for over 50

years with the last few years only providing environmental sounds to

me. Last March, 2004, I lost all sound.....went to the audiologist

and discovered the aids worked perfectly but I was totally deaf.

These past six months, I've relied totally on lip reading and

actually do an excellent job. I already had very good speech and I'm

told it is still very very good. I'm scheduled to have my implant

tomorrow and in 10 days will be activated. I will take it all in

stride, one day at a time. Low expectations, high hopes, and change,

change, change, all for the better.

Thank you again for your wonderful letter,

--Gayle