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I definitely cannot make any promises, however

I was able to help a hearing impaired lady with the

same kinds of financial glitches most of us endure, to

get digital hearing aids by working with the hearing

aid companies themselves---I literally went to the top.

At present, I am trying to now assist a member of my

Pain Group in the same way, hopefully. We will see.

About how many LP's with hearing needs are facing

the same problems? There may be more available

directly from the hearing aid companies if one knows

who to contact. I will certainly try my hardest. Since I was

able to help one person this way, I will certainly be

doing all I can to TRY to help each of you too, Cricket,

a, if I can.

In addition to hearing aids being covered by Medicare

and/or other means, there needs to be dental coverage.

I am in desperate need of dental care, and cannot get

it anywhere. I even appealed to the Dean Of The Dental

College at the university where I live!

It's sad, but all too often those who need help the

most, and deserve it, are the very ones who fall through

all the cracks and red tape.

Yet if I can help anyone else with their needs, then

that is something perhaps.

Adelaide

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I would like to start up a database for individuals who are having

issues with hearing aids. This is where ANSI can help our

organization. Maybe VanEtten can share more light on the

subject.

I believe we need to have numbers, showing ANSI this is the critical

need and maybe we can start moving forward with legislation for

insurance companies to cover hearing aids. We have a voice and we

need to raise it, loud and clear. Just think of all the baby boomers

out there who are also struggling with this issue.

I've had hearing aids since 1992 and it's been a real struggle for

me. My HMO insurance paid for the first set, with a lot of medical

necessity issues. Cigna HC pitched in $1,100 on my next pair. Since

then, no other insurance will touch the claim. I would hate to go on

disability because I can not afford $6,000 digital hearing aids to do

my job. I too, have been involved with Voc. Rehab and make too much

money for them to help me, but don't make enough to make payments on

anything.

Let's keep this conversation going, privately. Would anyone like to

start a Hearing Loss group of LP's? I'm sure there are other

groups for hearing loss that we can join and together we can network

and learn...

Keep in touch and Happy Christmas to everyone!!!

Cricket Lynch

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I think this would be a great idea. There are plenty of grants and

funding resources for children who need hearing aids, but very

limited for adults. If there was a way we could push to have the

Legislation to approve the bill to make health insurance cover

hearing aids, many individuals would be able to continue to be

productive and tax paying citizens in society!

Without hearing aids, I will not be able to work and then go back

onto Social Security and Medicaid. I'm too indpendent for that and

I'm not physically ready to be unemployed!

I know that individuals with SEDc are prone to have hearing loss and

have cleft palate, etc. I'm not sure about other types of dwarfism

have this type of a medical issue.

a

>

> I would like to start up a database for individuals who are having

> issues with hearing aids. This is where ANSI can help our

> organization. Maybe VanEtten can share more light on the

> subject.

>

> I believe we need to have numbers, showing ANSI this is the

critical

> need and maybe we can start moving forward with legislation for

> insurance companies to cover hearing aids. We have a voice and we

> need to raise it, loud and clear. Just think of all the baby

boomers

> out there who are also struggling with this issue.

>

> I've had hearing aids since 1992 and it's been a real struggle for

> me. My HMO insurance paid for the first set, with a lot of

medical

> necessity issues. Cigna HC pitched in $1,100 on my next pair.

Since

> then, no other insurance will touch the claim. I would hate to go

on

> disability because I can not afford $6,000 digital hearing aids to

do

> my job. I too, have been involved with Voc. Rehab and make too

much

> money for them to help me, but don't make enough to make payments

on

> anything.

>

> Let's keep this conversation going, privately. Would anyone like

to

> start a Hearing Loss group of LP's? I'm sure there are other

> groups for hearing loss that we can join and together we can

network

> and learn...

>

> Keep in touch and Happy Christmas to everyone!!!

>

> Cricket Lynch

>

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  • 2 years later...

When my son was first diagnosed with c'toma at age 4yo (3 years ago), his physician said that only one good ear is necessary. Just this year, he reported that the latest thinking is to address a problem when it gets identified, and not fall back on the one good ear theory. He suggested that I think about a hearing aid for my son who also has a conductive hearing loss in just one ear. Because of his hearing loss, feedback from his teachers and his sometimes unclear speech, I decided to persue the hearing aid right away. My son now has a Behind-the-Ear (BTE) hearing aid for 4 weeks. He did not have much difficulty in getting used to it. We did go in at 3-4 weeks to have it adjusted. Our insurance covered it (mostly) and we were told that many health insurances will cover HAs for children.

I plan to see how he does with the HA before I evaluate the need for an FM system. But the FM system can be "connected" to the hearing aid by attaching it to the bottom of the aid.

Hope this helps. Please let me know what you decide to do, or what your physician says.

NinaJan 29, 2009 10:28:56 AM, cholesteatoma wrote:

I am wondering about hearing aids because Chloe has had complete conductive hearing loss for most of the last three years. After the last surgery, where there was so much regrowth, the Dr. mentioned that we should consider a hearing aid, but when she had her audiology exam, the audiologist said that hearing aids wouldn't help her and that we should try an FM system instead (which is really only appropriate in the classroom setting). She said, and others have said this before, that all you need to hear is one ear, and she won't need an aid unless this becomes her only hearing ear. It seems like some of you are aiding just one ear. Am I doing right by Chloe not to pursue this?

On Thu, Jan 29, 2009 at 10:16 AM, Tom Hansen <pingmn123@...> wrote:

Don't be a afraid to shop around, mine cost me 2K in 2004 and the a dual digital. The rpice rang at that time was $1000 to $5000. My ins did not pay for it so I had to dig for it...some Ear Doc also sell them for extra profit. Get from the Doc what he feels will meet your needs then shop it around and go back with your best price. Odds are will meet it... There is a large mark up on these items...

Tom Hansen

From: Captain Definder <captaindefinder@...>Subject: Hearing Aidscholesteatoma Date: Thursday, January 29, 2009, 9:04 AM

Hello to all! Went to the doctor yesterday and it is now okay for me to get a hearing aid. For anyone in the group who wears hearing aids what is the very best one? My insurance does not cover hearing aids so I will be paying out of my pocket - the doctor showed me a hearing aid yesterday that was about $4,500 she said it is the best (not sure what the brand was) - I went on the internet looking for hearing aids and the one she showed me looked somewhat like the Siemens Centra Active and it looks as if I could buy one for approximately $2,000 (half the price). Need some hearing aid expert advice. Thanks in advance for whatever info you could share.

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I'm no doctor, but coming from someone who has had tubes in his ears

almost a 1/3 of his life, I would assume that if you have a tube,

that certain hearing aids would defeat the purpose of the tube

because it would plug up the canal. Also, the hearing aid would need

to be kept pristinly clean to keep bacteria from getting into the

middle ear. It's one thing to have funk on the outside of the ear

drum, but having a open door makes the odds of a really bad infection

much greater.

> >

> > Hello to all! Went to the doctor yesterday and it is now okay for

me

> to get a hearing aid. For anyone in the group who wears hearing aids

> what is the very best one? My insurance does not cover hearing aids

so

> I will be paying out of my pocket - the doctor showed me a hearing

aid

> yesterday that was about $4,500 she said it is the best (not sure

what

> the brand was) - I went on the internet looking for hearing aids

and the

> one she showed me looked somewhat like the Siemens Centra Active

and it

> looks as if I could buy one for approximately $2,000 (half the

price).

> Need some hearing aid expert advice. Thanks in advance for whatever

> info you could share.

> >

> >

> >

>

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My daughter had both ear drums disintegrate from the Cholesteatomas &

yet she wore hearing aids during this long process. Even the 1st

grafted in ear drum failed & yet she has continued to use hearing

aids. Yes, we have had to get new ear molds made as her exterior ear

was used in the grafting so the outer ear shape changes. She of

course can still use the same hearing aid, but has needed new outer

molds made. They are still worth getting & changing them as at least

she can have improved hearing during this long process.

Donna DeBoer

> >

> > Hello to all! Went to the doctor yesterday and it is now okay for

me

> to get a hearing aid. For anyone in the group who wears hearing aids

> what is the very best one? My insurance does not cover hearing aids

so

> I will be paying out of my pocket - the doctor showed me a hearing

aid

> yesterday that was about $4,500 she said it is the best (not sure

what

> the brand was) - I went on the internet looking for hearing aids

and the

> one she showed me looked somewhat like the Siemens Centra Active

and it

> looks as if I could buy one for approximately $2,000 (half the

price).

> Need some hearing aid expert advice. Thanks in advance for whatever

> info you could share.

> >

> >

> >

>

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