Re: Brad

February 21, 2004

brad

i never wore HA's before implant i am way too deaf for HA but before

implanting i had to under go testing with the most powerful HA i had to

have molds made wait two weeks then go for testing had i heard anything

using these HA then i would have had to wear them for 6 weeks then do hearing

testing again

most everyone who goes for a CI has had HA and the reason why they decide to

look into a CI is because their HA no longer give them the hearing they want

and need

i do know of several people who were sold very expensive aids which provided

very limited hearing never once were these people told a word about CI

from the HA dealers

to me this is wrong the time and money put into new HA that didn't

work and wouldn't work should have gone into better things like CI's

insurance companies need proof that HA do not give functional hearing in

order for the insurance company to pay for a CI

susan

February 21, 2004

Alice,

Yes, I have performed CI evaluations and have also talked to

audiologists at several centers and I am sorry to say I don't share your

conviction that the majority of centers are as diligent as it appears

your center was. It seems that there are almost as many protocols as

there are centers. I'm also concerned that if an ENT decides to start

doing CI's, (s)he and their audiologist are often considered a " center " .

I also had the personal experience of evaluating a person who, had I

followed the center's protocol would have been implanted. Using the

" gold standard " hearing aid as defined by that center, he scored 12% on

one syllable words (recorded on CD) at 70 dB. I " broke the rules " and

tested him with a pair of power digital hearing aids and he scored 48%.

That was with no experience with hearing aids in 40 years. As you would

expect with a CI, the longer he wore the hearing aids, the better he

heard. With candidacy opening up, I have to wonder if this won't happen

more often.

I've also seen activations and I agree that for appropriate candidates,

it is an exciting experience. But it is also exciting to be the

audiologist who finally gives a child the ability hear and discriminate

" s " by simply making a more appropriate earmold, or to expose someone to

a technology like dynamic frequency compression used in the AVR ImpaCt.

In addition to this listserv, I monitor several hearing aid lists and it

is clear that the level of diligence in hearing aids is variable at

best. The center where I worked may have been " current " with CI', but

they were certainly several years behind the times with hearing aids

and about 20 years behind in earmolds.

I am also concerned about controls, but having worked with many

insurance companies in the provision of hearing aids, I have rarely, if

ever, seen any requirements to provide specific documentation of

measurable benefit, though I think this will come. I do not know if

this is a condition of CI coverage, but I do know that during the year I

worked at this center (1999) disclosure of our protocols and results

were never discussed in regards to a specific patient's coverage. Data

were collected by our scientists, but that is a different matter.

I'm not trying to put down the CI or the appropriate provision of

services related to them, but the more I hear, the more I feel like

there is a lot of variability in terms of evaluation and candidacy

determination that makes me less than comfortable professionally and

personally.

If there is any data indicating how many centers adhere to certain

protocols or what hearing aids, earmolds and ALD's CI recipients used

(with their results) prior to implantation, I'd be VERY interested in

reading it.

____________________________________________

Best Regards,

Brad Ingrao, M.S.Ed. CCC-A, FAAA

Editor

EDEN - The Electronic Deaf Education Network

www.bradingrao.com

e-mail: info@...

Brad

I can understand and appreciate your concerns. It is aways good to be

comfortable with a criteria for a procedure such as this. I can share

with you my own experience and feel very comfortable that this

compairable with all CI programs.

A vigorous testing takes place before a patient can begin the journey to

a CI. We have tried, used, tested, cleaned, molded and listened over

and over again. We are required to use the best possible hearing aids

for our hearing needs for a period of time. Having a CI is not

encouraged until every possible alternative method has been tested.

Even then, the testing goes on and it is rigid and lengthy. We sit in

the same booth in which we had hearing testing. The speakers are not

moved..they are in the same places as is the seating arrangement.

There is actually more testing done to validate the need for a CI than

is done for hearing aids. Many of the centers that provide CI's also

provide hearing aids and/or BAHA devices. The CI is just one of the

ways these dedicated professionals use to help their patients with their

hearing needs. I do know that given the choice, if a hearing aid worked

for me, I would not have opted for a surgical procedure instead. I would

imagine there can be variables with hearing aids and CIs as it's

impossible to know that every hearing aid provider is following the same

exact criteria with their clients.

Have you ever asked to participate in a CI evaluation? Since your

interest is high in this area, this might be something you would really

enjoy. If you do decide to do this, please follow it thru to the

activation. I can't even begin to tell you how relieved I was to

finally hear after a very extended period of time working with different

hearing aids thru two different medical facilities. We gave it many

long and difficult months before we began to lean toward a cochlear

implant. Looking back now, except for the fact that I proved to myself

that there was no other choice, I feel that a great deal of time and a

lot of money was wasted getting me to the point of being an approved CI

candidate and finally a CI user who could hear.

I believe we can rest assured that it is a rare occasion for someone to

be implanted who could have done the same or better with a hearing aid.

Since insurance companies are very much involved, the controls are

tightly monitored. Actually, I'm more concerned that people are being

mistreated by hearing aid dealers who are just out to make a sale and

can get by with it. Unfortunately, too many people are tricked into big

dollar purchase for hearing aids that are useless to them. I've met

many of them.

Alice

February 21, 2004

Brad,

I want to step in here and ask a question or make a comment or two

if you don't mind.

First, Thank you for all of your comments. It's all very interesting

and food for thought.

Now fast forward to the real world<smiles> and think of your average

person who could possibly benefit some from high tech hearing aids

at a cost that for the most part, insurance doesn't cover and now

hearing programs and hearing aids have been excluded from some state

Medical programs. Where does this leave that person? Are they to

struggle until they are " deaf enough " because they can't afford the

cost of the hearing aids? What does this person do after their

trial period with high tech hearing aids ends and they still aren't

considered deaf enough to be implanted?

Kind of seems to be a no win situation there.

Maybe you could give some light on why most insurance companies

still don't cover the cost of a simple hearing aid yet alone a high

tech one.

These were just some thoughts I had as one of several members of a

family of late deafened members(progressive nerve deafness) some of

whom have always had to struggle to buy any type of hearing aid over

the years let alone a high tech one. 4 of us now have implants, but

we were definitely deaf enough at the time of implant.<smile>

Regards,

Silly MI

In , " Brad Ingrao " <bingrao@h...> wrote:

> Alice,

>

> Yes, I have performed CI evaluations and have also talked to

> audiologists at several centers and I am sorry to say I don't

share your

> conviction that the majority of centers are as diligent as it

appears

> your center was. It seems that there are almost as many protocols

as

> there are centers. I'm also concerned that if an ENT decides to

start

> doing CI's, (s)he and their audiologist are often considered

a " center " .

>

> I also had the personal experience of evaluating a person who, had

I

> followed the center's protocol would have been implanted. Using the

> " gold standard " hearing aid as defined by that center, he scored

12% on

> one syllable words (recorded on CD) at 70 dB. I " broke the rules "

and

> tested him with a pair of power digital hearing aids and he scored

48%.

> That was with no experience with hearing aids in 40 years. As you

would

> expect with a CI, the longer he wore the hearing aids, the better

he

> heard. With candidacy opening up, I have to wonder if this won't

happen

> more often.

>

> I've also seen activations and I agree that for appropriate

candidates,

> it is an exciting experience. But it is also exciting to be the

> audiologist who finally gives a child the ability hear and

discriminate

> " s " by simply making a more appropriate earmold, or to expose

someone to

> a technology like dynamic frequency compression used in the AVR

ImpaCt.

>

> In addition to this listserv, I monitor several hearing aid lists

and it

> is clear that the level of diligence in hearing aids is variable at

> best. The center where I worked may have been " current " with CI',

but

> they were certainly several years behind the times with hearing

aids

> and about 20 years behind in earmolds.

>

> I am also concerned about controls, but having worked with many

> insurance companies in the provision of hearing aids, I have

rarely, if

> ever, seen any requirements to provide specific documentation of

> measurable benefit, though I think this will come. I do not know

if

> this is a condition of CI coverage, but I do know that during the

year I

> worked at this center (1999) disclosure of our protocols and

results

> were never discussed in regards to a specific patient's coverage.

Data

> were collected by our scientists, but that is a different matter.

>

> I'm not trying to put down the CI or the appropriate provision of

> services related to them, but the more I hear, the more I feel like

> there is a lot of variability in terms of evaluation and candidacy

> determination that makes me less than comfortable professionally

and

> personally.

>

> If there is any data indicating how many centers adhere to certain

> protocols or what hearing aids, earmolds and ALD's CI recipients

used

> (with their results) prior to implantation, I'd be VERY interested

in

> reading it.

>

> ____________________________________________

> Best Regards,

>

> Brad Ingrao, M.S.Ed. CCC-A, FAAA

> Editor

> EDEN - The Electronic Deaf Education Network

> www.bradingrao.com

> e-mail: info@b...

>

> Brad

>

> I can understand and appreciate your concerns. It is aways good

to be

> comfortable with a criteria for a procedure such as this. I can

share

> with you my own experience and feel very comfortable that this

> compairable with all CI programs.

>

> A vigorous testing takes place before a patient can begin the

journey to

> a CI. We have tried, used, tested, cleaned, molded and listened

over

> and over again. We are required to use the best possible hearing

aids

> for our hearing needs for a period of time. Having a CI is not

> encouraged until every possible alternative method has been tested.

> Even then, the testing goes on and it is rigid and lengthy. We

sit in

> the same booth in which we had hearing testing. The speakers are

not

> moved..they are in the same places as is the seating arrangement.

> There is actually more testing done to validate the need for a CI

than

> is done for hearing aids. Many of the centers that provide CI's

also

> provide hearing aids and/or BAHA devices. The CI is just one of

the

> ways these dedicated professionals use to help their patients with

their

> hearing needs. I do know that given the choice, if a hearing aid

worked

> for me, I would not have opted for a surgical procedure instead. I

would

> imagine there can be variables with hearing aids and CIs as it's

> impossible to know that every hearing aid provider is following

the same

> exact criteria with their clients.

>

> Have you ever asked to participate in a CI evaluation? Since your

> interest is high in this area, this might be something you would

really

> enjoy. If you do decide to do this, please follow it thru to the

> activation. I can't even begin to tell you how relieved I was to

> finally hear after a very extended period of time working with

different

> hearing aids thru two different medical facilities. We gave it

many

> long and difficult months before we began to lean toward a cochlear

> implant. Looking back now, except for the fact that I proved to

myself

> that there was no other choice, I feel that a great deal of time

and a

> lot of money was wasted getting me to the point of being an

approved CI

> candidate and finally a CI user who could hear.

>

> I believe we can rest assured that it is a rare occasion for

someone to

> be implanted who could have done the same or better with a hearing

aid.

> Since insurance companies are very much involved, the controls are

> tightly monitored. Actually, I'm more concerned that people are

being

> mistreated by hearing aid dealers who are just out to make a sale

and

> can get by with it. Unfortunately, too many people are tricked

into big

> dollar purchase for hearing aids that are useless to them. I've

met

> many of them.

>

> Alice

>

February 21, 2004

When my mother went for testing to get a CI she was put through alot of

test, some that made her sick and amost ready to back out. When I went to

be tested I expected the same... all I got was a hearing test. But then I

have been wearing aids for the past 40 years

susan & hobbes

michigan

>A vigorous testing takes place before a patient can begin the journey to

>a CI. We have tried, used, tested, cleaned, molded and listened over

>and over again. We are required to use the best possible hearing aids

>for our hearing needs for a period of time. Having a CI is not

>encouraged until every possible alternative method has been tested.

>Even then, the testing goes on and it is rigid and lengthy. We sit in

February 21, 2004

Thanks for the information and clarification .

I agree that it is inappropriate for a person never to hear about CI's

just as I think it's inappropriate for them not to hear about T-Coils,

FM and earmold modifications. It appears that my next step is to poll

some insurance carriers and find out what criteria they are using to

determine " no hearing aid benefit. " This is rising to the surface as

the weakest link in this chain as far as I can see it.

____________________________________________

Best Regards,

Brad Ingrao, M.S.Ed. CCC-A, FAAA

Editor

EDEN - The Electronic Deaf Education Network

www.bradingrao.com

e-mail: info@...

Re: Brad

brad

i never wore HA's before implant i am way too deaf for HA but

before

implanting i had to under go testing with the most powerful HA i

had to

have molds made wait two weeks then go for testing had i heard

anything

using these HA then i would have had to wear them for 6 weeks then do

hearing

testing again

most everyone who goes for a CI has had HA and the reason why they

decide to look into a CI is because their HA no longer give them the

hearing they want and need i do know of several people who were sold

very expensive aids which provided

very limited hearing never once were these people told a word

about CI

from the HA dealers

to me this is wrong the time and money put into new HA that

didn't

work and wouldn't work should have gone into better things like CI's

insurance companies need proof that HA do not give functional hearing in

order for the insurance company to pay for a CI

susan

February 21, 2004

Alice,

I certainly agree with you about better standards and second opinions!

Brad

<If there is any data indicating how many centers adhere to certain

protocols or what hearing aids, earmolds and ALD's CI recipients

used(with their results) prior to implantation, I'd be VERY interested

in reading it. Brad>

Yes.. this would be a good data. I would be interested in reading it as

well. You have presented a very interesting topic today. Your comments

about the patient who benefited by the hearing aids after meeting the

criteria for a CI were indeed interesting. In my case, I used a

" powerful digital hearing aid " at a cost of $2400 at the time, which

didn't provide me with functional sound. A standard protocol should

certainly be in order. Likewise for hearing aid vendors. I guess there

can be good and bad in everything.

This is a tough subject. As patients, we are at the mercy of the

professionals and have to believe that they are following all the

appropriate guidelines. This points back to some previous threads we've

discussed about making sure you are going to a reputable center and when

in doubt..getting that second opinion.

Alice

February 21, 2004

Good plan ! I thought I'd take a shot here first, but at this

point, going to the horse's mouth is in order.

I did just get a funny e-mail that said that " For every action there is

an equal and opposite government program "

____________________________________________

Best Regards,

Brad Ingrao, M.S.Ed. CCC-A, FAAA

Editor

EDEN - The Electronic Deaf Education Network

www.bradingrao.com

e-mail: info@...

RE: Candidacy Requirements

Alice,

I am still looking for the FDA document.

It's interesting that the 3 manufacturers have vastly different

representations of the regulations. One would think they would all have

a link to the actual document.

It's a bit disturbing to me that it is so difficult to locate this

document.

________________________________________________________________

The best thing to hit the Internet in years - Juno SpeedBand!

Surf the Web up to FIVE TIMES FASTER!

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March 17, 2004

brad

i think that s great how you can see your son as the individual that he is.

everyone is unique and has different needs and skills. if more people could see

us deaf ies as indiviuals who happen to be deaf, i thinkthe world would be a

better place.

its great that you accept your son and decide what is best for him at this time

given all of his circumstances, skills, temperament, etc. and not based on what

your own desires pr needs are or what the current trend is.

jjust as no one educational program can meet the needs of all deaf children, ci

is not for all deaf people and we need to respect that too. deaf culture sign

langauge and bibi are all great things that add to our lives.

he is fortunate to have someone as wise and knowledgable as you to guide him,

especially with such a difficult background to overcome. He will thrive and do

well.

jb

March 18, 2004

JB,

Thanks, but I don't know any other way of dealing with people other than

treating each one as an individual.

____________________________________________

Best Regards,

Brad Ingrao, M.S.Ed. CCC-A, FAAA

Editor

EDEN - The Electronic Deaf Education Network

www.bradingrao.com

e-mail: info@...

Re: Brad

brad

i think that s great how you can see your son as the individual that he

is. everyone is unique and has different needs and skills. if more

people could see us deaf ies as indiviuals who happen to be deaf, i

thinkthe world would be a better place.

its great that you accept your son and decide what is best for him at

this time given all of his circumstances, skills, temperament, etc. and

not based on what your own desires pr needs are or what the current

trend is.

jjust as no one educational program can meet the needs of all deaf

children, ci is not for all deaf people and we need to respect that too.

deaf culture sign langauge and bibi are all great things that add to our

lives.

he is fortunate to have someone as wise and knowledgable as you to guide

him, especially with such a difficult background to overcome. He will

thrive and do well.

jb

April 25, 2004

Alice,

I agree with the family dynamic changes that follow major hearing

changes (in both directions). I have a different perspective than most

hearing people because I do have a place in the Deaf community and can

easily imagine a full life without hearing. Of course, I can't say that

with 100% certainty since I still have my hearing, but since I know so

many Deaf people who are not " missing " anything, I feel pretty good

about that statement.

That option is, of course, not open to everyone, and for someone who has

progressed out of hearing, the CI is very likely the best solution. But

I am concerned when distorted statistics like " 100% success " get

repeated so often that the message begins to be, " Can't hear well, get a

CI, can't hurt. " While I agree that the chances of improvement are

probably better than not, without reliable independent sources of data,

I don't feel comfortable joining the pep squad.

At a convention recently I asked a few representatives from CI

manufacturers about " less than expected " and " less than optimal " results

and they all admitted that they really have no idea of how many people

fall into these categories because the CI centers don't report those

data.

Even more disturbing was a CI recipient with only fair results who was

being pressured by audiologists and other CI users to exaggerate how

well they were doing, or at least not volunteer information about their

less than expected results.

As recently as this week I read of one member of this list actively

seeking a CI and being told to " go for it " only to hear just a bit later

that they have a profound loss and are wearing CIC's. There is no way

that this person is optimally aided and in fact, their audiologist is

initiating a BTE trial prior to making a determination. Many people

were willing to encourage this person to move forward with a CI

evaluation, yet no one asked anything about hearing aids.

So I suppose I'm saying that I see the general theme of " CI's will

always help you if... " strikes me very similar to the whole brand thing.

Your recent request to omit brand information so as not to color a

person's choice made a lot of sense. If a person joins this list and

only hears the wonderful positive experiences and " It will get better, I

know it will " but never hears about people who do " just OK " they may be

disappointed without preparation. If, on the other hand, there is a

balance of " good, bad and in-between " then expectations might be more

realistic and those who exceed them would feel an even greater sense of

accomplishment.

By the way, if I lost an arm tomorrow, I doubt I'd seek help " in any

form " but that's just me. I avoid medical and surgical interventions

unless my life is at imminent peril. More than that, I have a lot of

experience with people with a variety of disabilities in the

" independent living " movement which, unlike the prevailing medical model

of hearing loss (your ears are broken and therefore they - and you -

need to be fixed) is full of people who accept their differences and

live successful lives by finding reasonable accommodations and working

the system rather than vice versa.

____________________________________________

Best Regards,

Brad Ingrao, M.S.Ed. CCC-A, FAAA

Editor

EDEN - The Electronic Deaf Education Network

www.bradingrao.com

e-mail: info@...

April 26, 2004

Brad,

None of us on the list are professionals. So while many do try to

present accurate information, truth is, we are here to share our

eprsonal experiences.

Is the CI testing process less than ideal? Perhaps. Would most

of us benefit from better hearing aid fitting? I wonder. How far can

one take this? And who is going to pay for it. Today's hearing aids

run in the thousands. Each. Before you go and state that a CI is

over $50grand, keep reading.

As I said before, I was born with a mild loss in both ears. I

worked at a job where I dealt withe mechanics and customers and used

the phone all day long. Then I noticed there was a change.

Eventually I hated to pick up the phone. When I was fitted with new

aids (the last set), I used the phone again....but not for long. I

was still losing hearing.

I imagine that today, if it was not for the CI, I probably would

be friendless, and clueless. Because I am also legally blind, and too

old to learn sign. Sure, if I tried harder.... Or if I kept trying

the latest hearing aids. Who pays for that? How is the best, the

strongest, the most powerful aid going to help me when all it will do

is (insert scene from back the the Future when J Fox picks his

guitar and is blown across the room by the humungous speaker that DOc

created). Its better than nothing.

Again, this being a list inhabited by non professionals, we tend

to be relative. It cannot be helped. Some of us are not into

numbers. I am one of them. That is ok. Let the CI companies, the

audies, the hearing aid profession, etc. deal with numbers and let

them work on creating a standard that wont fail. I am 100%

successful, my CI works. But that is nto what you want to hear, I

know. So who is going to do the thankless task of collecting

unbiased, totally ccurate, unmistakable data? And who will decide

what to sue for the criteria? Oh, and how should it be interpreted?

I know a young aldy who gained little from the current crop of HAs.

Yet she did mot pass the criteria for a CI. Why? Because she was

able to anticipate the sentence tests. She is in the education field

and went by the context.

You said, " If a person joins this list and

only hears the wonderful positive experiences and " It will get better,

I

know it will " but never hears about people who do " just OK " they may

be disappointed without preparation. If, on the other hand, there is

a balance of " good, bad and in-between " then expectations might be

more realistic and those who exceed them would feel an even greater

sense of

accomplishment. "

This is where we flop. After all, we are not pros, we are just

people trying to make the most of what we have. How many of us will

write and say, " hell, I cant make it work for me like you guys do!

Its not living up to my expectations! " And so on. Its that human

nature. Dont think we can change that. If we could, it would surely

paint a more balance picture, I agree.

" If I lost an arm.... " Many do not truly know what they would do

if.... On one list, there was a debate on " if I had a choice between

sight and hearing, I would choose.... " Its pointless, really. We

cannot know unless we face it. Just as its pointless to state that

you would do nothing more about a lost arm than to seek reasonable

accomodations. That may well be all you need. Many deaf people do

that. You say that if you went deaf, you would have no problem

adjusting because you are part of the deaf world. You might. But you

dont know. No one knows. A person born deaf, or born blind, do not

know anything else. There are blind people who would not consider

regaining sifgt, just as some deaf people would not consider a CI/

There are poeple who never leave town because they dont know what lies

beyond the borders.

Some people talk about the joys of cooking the old fashioned way.

Its fun! But ask a pioneer how much fun it was. Way different.

Today we have SO many options at our disposal. When we reach the

point of frustrations, we want to reach for what is there. I got

frustrated. I got a CI. Its not perfect, its not meeting my

expectations. But I just have not gotten there yet. I didnt know

where my life was going pre-CI. But it was downhill. Now its uphill.

Well, I dont know if I helped any. I believe tho that you would

want to understand that what you read here is relative to the writer.

And that what you read is from a personal view, and not that of a

professional.

By the way, seeking reasonable accomodation itself can and is a

nightmare. Society just does not care unless it is forced to provide

" reasonable accomodation " . It never ends. There are even opposing

views within the disabled community on what is acceptable as a

reasonable accomodation. Closed captioning for example is not and

probably will never reach 100%. How frustrating to find a movie on

TV, and discover its not captioned. Or, a blind person with a guide

dog needing a cab and being told, no dog no dog! What of a wheelchair

user who cant use the bathroom in a store because they never got

around to upgrading, and he has to frantically wheel all the way

across a parking lot because Mcs HAS to have those accesible

restrooms. And he barely makes it.

When we lose a part of our body, be it a limb or sense, we are at

society's mercy. Its one thing to sit on the other side and think its

possible, a totally different reality when we are the one facing it

head on.

Sigh. I had no idea how that soapbox got there. Anyway.

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

Sometimes one at a time is better than nothing at all.

& Gimlet (Guide Dawggie)

Portland, Oregon

N24C 3G 8/2000 Hookup

rlclark77@...

http://home.comcast.net/~rlclark77/

April 26, 2004

Hi Brad,

I'm supposed to have BTE test but it didn't happened because my hearing is

bad and I'm having trouble with increased loudness. My left ear experience

pain when loud high frequency is given even if I *cannot* hear the sound.

(will hyperacusis problem go away with Cochlear Implant?)

Here's the result of my audiogram taken today:

(frequency / right / left)

250 / 55 / 60

500 / 70 / 70

1000 / 85 / 100

2000 / 80 / 95

4000 / 115 / 115

As far as I know the 115 in the left ear is supposed to be NR since I cannot

hear it at all.

You will have to define the scope of independency/dependency to tackle the

issue of hearing loss making one dependent. With some disability, no matter

what, you are just incapable of doing something because it *phyiscally*

limit you. Even independent deaf, when told to listen to news, is

practically impossible. Hearing people get used to hearing environment, and

they want to be there, so they become dependent on that environment when

they have hearing loss. In the end, it's a matter of what kind of life you

want to live on.

Regards/

Jerome

RE: Brad

Alice,

I agree with the family dynamic changes that follow major hearing changes

(in both directions). I have a different perspective than most hearing

people because I do have a place in the Deaf community and can easily

imagine a full life without hearing. Of course, I can't say that with 100%

certainty since I still have my hearing, but since I know so many Deaf

people who are not " missing " anything, I feel pretty good about that

statement.

That option is, of course, not open to everyone, and for someone who has

progressed out of hearing, the CI is very likely the best solution. But I

am concerned when distorted statistics like " 100% success " get repeated so

often that the message begins to be, " Can't hear well, get a CI, can't

hurt. " While I agree that the chances of improvement are probably better

than not, without reliable independent sources of data, I don't feel

comfortable joining the pep squad.

At a convention recently I asked a few representatives from CI manufacturers

about " less than expected " and " less than optimal " results and they all

admitted that they really have no idea of how many people fall into these

categories because the CI centers don't report those data.

Even more disturbing was a CI recipient with only fair results who was being

pressured by audiologists and other CI users to exaggerate how well they

were doing, or at least not volunteer information about their less than

expected results.

As recently as this week I read of one member of this list actively seeking

a CI and being told to " go for it " only to hear just a bit later that they

have a profound loss and are wearing CIC's. There is no way that this person

is optimally aided and in fact, their audiologist is initiating a BTE trial

prior to making a determination. Many people were willing to encourage this

person to move forward with a CI evaluation, yet no one asked anything about

hearing aids.

So I suppose I'm saying that I see the general theme of " CI's will always

help you if... " strikes me very similar to the whole brand thing.

Your recent request to omit brand information so as not to color a person's

choice made a lot of sense. If a person joins this list and only hears the

wonderful positive experiences and " It will get better, I know it will " but

never hears about people who do " just OK " they may be disappointed without

preparation. If, on the other hand, there is a balance of " good, bad and

in-between " then expectations might be more realistic and those who exceed

them would feel an even greater sense of accomplishment.

By the way, if I lost an arm tomorrow, I doubt I'd seek help " in any form "

but that's just me. I avoid medical and surgical interventions unless my

life is at imminent peril. More than that, I have a lot of experience with

people with a variety of disabilities in the " independent living " movement

which, unlike the prevailing medical model of hearing loss (your ears are

broken and therefore they - and you - need to be fixed) is full of people

who accept their differences and live successful lives by finding reasonable

accommodations and working the system rather than vice versa.

____________________________________________

Best Regards,

Brad Ingrao, M.S.Ed. CCC-A, FAAA

Editor

EDEN - The Electronic Deaf Education Network www.bradingrao.com

e-mail: info@...

April 26, 2004

Thanks for the clarifications and perspective .

____________________________________________

Best Regards,

Brad Ingrao, M.S.Ed. CCC-A, FAAA

Editor

EDEN - The Electronic Deaf Education Network

www.bradingrao.com

e-mail: info@...

Re: Brad

Brad,

None of us on the list are professionals. So while many do try to

present accurate information, truth is, we are here to share our

eprsonal experiences.

Is the CI testing process less than ideal? Perhaps. Would most of

us benefit from better hearing aid fitting? I wonder. How far can one

take this? And who is going to pay for it. Today's hearing aids run in

the thousands. Each. Before you go and state that a CI is over

$50grand, keep reading.

As I said before, I was born with a mild loss in both ears. I

worked at a job where I dealt withe mechanics and customers and used the

phone all day long. Then I noticed there was a change.

Eventually I hated to pick up the phone. When I was fitted with new

aids (the last set), I used the phone again....but not for long. I was

still losing hearing.

I imagine that today, if it was not for the CI, I probably would be

friendless, and clueless. Because I am also legally blind, and too old

to learn sign. Sure, if I tried harder.... Or if I kept trying the

latest hearing aids. Who pays for that? How is the best, the

strongest, the most powerful aid going to help me when all it will do is

(insert scene from back the the Future when J Fox picks his

guitar and is blown across the room by the humungous speaker that DOc

created). Its better than nothing.

Again, this being a list inhabited by non professionals, we tend to

be relative. It cannot be helped. Some of us are not into numbers. I

am one of them. That is ok. Let the CI companies, the audies, the

hearing aid profession, etc. deal with numbers and let them work on

creating a standard that wont fail. I am 100% successful, my CI works.

But that is nto what you want to hear, I know. So who is going to do

the thankless task of collecting unbiased, totally ccurate,

unmistakable data? And who will decide what to sue for the criteria?

Oh, and how should it be interpreted?

I know a young aldy who gained little from the current crop of HAs.

Yet she did mot pass the criteria for a CI. Why? Because she was able

to anticipate the sentence tests. She is in the education field and

went by the context.

You said, " If a person joins this list and only hears the wonderful

positive experiences and " It will get better, I know it will " but never

hears about people who do " just OK " they may be disappointed without

preparation. If, on the other hand, there is a balance of " good, bad

and in-between " then expectations might be more realistic and those who

exceed them would feel an even greater sense of accomplishment. "

This is where we flop. After all, we are not pros, we are just

people trying to make the most of what we have. How many of us will

write and say, " hell, I cant make it work for me like you guys do!

Its not living up to my expectations! " And so on. Its that human

nature. Dont think we can change that. If we could, it would surely

paint a more balance picture, I agree.

" If I lost an arm.... " Many do not truly know what they would do

if.... On one list, there was a debate on " if I had a choice between

sight and hearing, I would choose.... " Its pointless, really. We

cannot know unless we face it. Just as its pointless to state that you

would do nothing more about a lost arm than to seek reasonable

accomodations. That may well be all you need. Many deaf people do

that. You say that if you went deaf, you would have no problem

adjusting because you are part of the deaf world. You might. But you

dont know. No one knows. A person born deaf, or born blind, do not

know anything else. There are blind people who would not consider

regaining sifgt, just as some deaf people would not consider a CI/ There

are poeple who never leave town because they dont know what lies beyond

the borders.

Some people talk about the joys of cooking the old fashioned way.

Its fun! But ask a pioneer how much fun it was. Way different.

Today we have SO many options at our disposal. When we reach the point

of frustrations, we want to reach for what is there. I got frustrated.

I got a CI. Its not perfect, its not meeting my expectations. But I

just have not gotten there yet. I didnt know where my life was going

pre-CI. But it was downhill. Now its uphill.

Well, I dont know if I helped any. I believe tho that you would

want to understand that what you read here is relative to the writer.

And that what you read is from a personal view, and not that of a

professional.

By the way, seeking reasonable accomodation itself can and is a

nightmare. Society just does not care unless it is forced to provide

" reasonable accomodation " . It never ends. There are even opposing

views within the disabled community on what is acceptable as a

reasonable accomodation. Closed captioning for example is not and

probably will never reach 100%. How frustrating to find a movie on TV,

and discover its not captioned. Or, a blind person with a guide dog

needing a cab and being told, no dog no dog! What of a wheelchair user

who cant use the bathroom in a store because they never got around to

upgrading, and he has to frantically wheel all the way across a parking

lot because Mcs HAS to have those accesible restrooms. And he

barely makes it.

When we lose a part of our body, be it a limb or sense, we are at

society's mercy. Its one thing to sit on the other side and think its

possible, a totally different reality when we are the one facing it head

on.

Sigh. I had no idea how that soapbox got there. Anyway.

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

Sometimes one at a time is better than nothing at all.

& Gimlet (Guide Dawggie)

Portland, Oregon

N24C 3G 8/2000 Hookup

rlclark77@...

http://home.comcast.net/~rlclark77/

April 26, 2004

Jerome,

Good point about choosing a lifestyle.

I'm not sure if it's available in your country, but the AVR ImpaCT might

be a good hearing aid to evaluate.