Re: CI Criteria

[Guest guest]

I would think the insurance company or Medicare would not cover it. I

do know that my insurance company wouldn't have paid a dime if I

hadn't met the criteria.

Kat

On Thu, Jun 4, 2009 at 7:50 PM, <lkozlik@...> wrote:

>

>

> Hi everyone,

>

> If someone is deemed a CI candidate " off label " (meaning that they do not

> fit the standard criteria for candidacy of 60% or less in the better ear and

> 40% or less in the poorer ear), do any of the CI companies have a final say

> in determining who is a candidate?

>

> In other words, if an audi declared someone a candidate, but they did not

> fit the " standard " criteria, could any of the 3 implant companies refuse to

> provide a CI?

>

> I'm just asking this question for curiosity's sake. I do not know anyone who

> has been implanted " off label. "

>

>

>

>

[Guest guest]

Kat,

Thanks for your reply. The reason I asked this question is because on a message

board for the deaf and HoH I read about several cases in which people who could

understand 80% of speech with hearing aids were approved for CIs. They were

given CIs based on the fact that they could not hear speech in noise.

[Guest guest]

Hi ,

I received an e-mail from someone who claimed to be " off label. " She was

talking about how she wasn't a bilateral candidate because she still heard so

well in her other ear. I asked her how she even qualified for the one she got

and she said her surgeon did her " off label. "

Jim

>

> Hi everyone,

>

> If someone is deemed a CI candidate " off label " (meaning that they do not fit

the standard criteria for candidacy of 60% or less in the better ear and 40% or

less in the poorer ear), do any of the CI companies have a final say in

determining who is a candidate?

>

> In other words, if an audi declared someone a candidate, but they did not fit

the " standard " criteria, could any of the 3 implant companies refuse to provide

a CI?

>

> I'm just asking this question for curiosity's sake. I do not know anyone who

has been implanted " off label. "

>

>

>

[Guest guest]

Hi Jim,

Thank you for telling me that because there is a person on the deaf and HoH

message board I participate on who claims people are being implanted " off label "

and it sounded (no pun intended) too good to be true. This person also said that

it isn't uncommon for people to shop around for a CI surgeon who is willing to

implant them if they've been denied by another CI center.

[Guest guest]

Jim & ,

 

I believe that you are referring to me.  I was completely deaf in my left ear

but still had decent hearing in my right ear which was constantly fluctuating. 

You would be shocked at my hearing tests in that ear.  The hearing swung to

great to non existant.  However the frequency and duration of the fluctuations

were escalating and as my hearing loss was determined to be auto immune - my

right ear was essentially a ticking time bomb and the question was not if but

when I would lose all hearing in the right ear. 

I am a 35 year old mother of a five year old son who has autism.  His verbal

communication is still developing and I was terrified of being totally deaf for

any period of time and not be able to support my son's therapists and be totally

a part of his progress.  Therefore I went through all the testing ie/vestibular

hearing, psych, etc.  There was a CI team meeting where there was my doctor

(neurotologist), audies and a few other people who decided that they will

implant my left ear. That was 11/07.  I was hearing from my right ear at the

time.  During 2008 I lost hearing in my right ear again from May-October.  Then

it came back until December. Then I got it back again January 2009 and now it is

gone since February.  I am hearing solely out of my cochlear now and am very

grateful for it.  My progress was slower then most because of when I was hearing

out of my " good " ear but since it is my only form of hearing now - my speech

discrimination went

from 40% to 80% and I am still getting it tweaked.  I believe that we will wait

on my right ear a few more months and will then start the process for me to go

bilateral.  Everyone's situation is unique.  I am so grateful that my doctor

advocated for me.

 

Lori P

Phoenix, AZ

From: jimak38 <j1meaves@...>

Subject: Re: CI Criteria

Date: Thursday, June 4, 2009, 6:42 PM

Hi ,

I received an e-mail from someone who claimed to be " off label. " She was talking

about how she wasn't a bilateral candidate because she still heard so well in

her other ear. I asked her how she even qualified for the one she got and she

said her surgeon did her " off label. "

Jim

>

> Hi everyone,

>

> If someone is deemed a CI candidate " off label " (meaning that they do not fit

the standard criteria for candidacy of 60% or less in the better ear and 40% or

less in the poorer ear), do any of the CI companies have a final say in

determining who is a candidate?

>

> In other words, if an audi declared someone a candidate, but they did not fit

the " standard " criteria, could any of the 3 implant companies refuse to provide

a CI?

>

> I'm just asking this question for curiosity's sake. I do not know anyone who

has been implanted " off label. "

>

>

>

[Guest guest]

Hi Lori,

Thanks for the clarification. I'm glad to hear the CI is working out for you.

Going bilateral has already made a huge difference for me and I'm not even two

months out from the surgery yet.

Best wishes and regards,

Jim

> >

> > Hi everyone,

> >

> > If someone is deemed a CI candidate " off label " (meaning that they do not

fit the standard criteria for candidacy of 60% or less in the better ear and 40%

or less in the poorer ear), do any of the CI companies have a final say in

determining who is a candidate?

> >

> > In other words, if an audi declared someone a candidate, but they did not

fit the " standard " criteria, could any of the 3 implant companies refuse to

provide a CI?

> >

> > I'm just asking this question for curiosity's sake. I do not know anyone who

has been implanted " off label. "

> >

> >

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Lori,

I hope I don't sound rude, but I wasn't referring to you. The cases I mentioned

were those that were quoted by someone on another deaf and HoH message board.

Since there weren't any names mentioned, I don't know if this person was talking

about you or not. Please be aware that I do not make any judgements one way or

the other about a person's candidacy for CI. If they wish to be implanted, I say

more power to them.

[Guest guest]

Oh, geez, , I thought you knew me!  LOL  I am " off label " , if that is what

you want to call me.  Actually, my surgeon and audiologist call me and my sister

" atypical " CI candidate, meaning that we did not meet the criteria, but

they felt the CI would help us and that we would be good candidates.

I do not believe the manufacturer's had any say...it was strictly the

audiologist's recommendation, and the physician's attempt to get insurance

approval.  In my case, right ear understood 20% single words, 70% in my left

ear.  My sister was totally deaf in her left ear, and had 100% understanding of

words in her right ear with her hearing aid.  I got the Cochlear Freedom, she

got the Med El Opus (I think that is what they were implanting last September). 

Does that answer your question???  Why are you wondering about this??

And, , can I be your friend now???  Hmmm???  LOL

 

________________________________

From: " lkozlik@... " <lkozlik@...>

Sent: Thursday, June 4, 2009 6:50:44 PM

Subject: CI Criteria

Hi everyone,

If someone is deemed a CI candidate " off label " (meaning that they do not fit

the standard criteria for candidacy of 60% or less in the better ear and 40% or

less in the poorer ear), do any of the CI companies have a final say in

determining who is a candidate?

In other words, if an audi declared someone a candidate, but they did not fit

the " standard " criteria, could any of the 3 implant companies refuse to provide

a CI?

I'm just asking this question for curiosity's sake. I do not know anyone who has

been implanted " off label. "

[Guest guest]

,

mutters " And, , can I be your friend now??? Hmmm??? "

I will vouch for . She is a good sort. Off label or not, she is

alright. LOL

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

How is it that we put man on the moon before we figured out it

would be a good idea to put wheels on luggage?

& Dreamer Doll ke7nwn

E-mail-

rclark0276@...

Home Page-

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

[Guest guest]

,

I asked this question because someone on a deaf and HoH message board claimed

that people with as much as 80% speech discrimination with hearing aids were

being declared CI candidates. I didn't know if this was true or not, so I

thought I'd ask the list. Again, I am not making any judgements about off label

or boderline candidates. I was borderline myself due to the fact that I had

profound hearing loss in my left ear and severe-profound in my right ear. My

speech discrimination aided was 8% for my left ear and 22% for my right.

P.S. You can be my friend anytime. <smile> LOL.

[Guest guest]

And, now that I'm caught up with reading all the emails...I believe one of the

things my CI team considered was the fact that I had difficulty hearing in

noise.  That was one of the things I brought up at my appointments...how I

couldn't participate/hear in social settings, meetings at work, and conferences

I had to attend to maintain my continuing education credits for work. 

So there you haven it.  [feeling lonely from lack of friends....aside from

....hey , thanks for the vote of confidence. Here's a mocha for

you...what flavor would you like???  Hmmmm????...]

 

________________________________

From: Kinsella <jmkinsella55@...>

Sent: Friday, June 5, 2009 5:24:20 PM

Subject: Re: CI Criteria

Oh, geez, , I thought you knew me!  LOL  I am " off label " , if that is what

you want to call me.  Actually, my surgeon and audiologist call me and my sister

" atypical " CI candidate, meaning that we did not meet the criteria, but

they felt the CI would help us and that we would be good candidates.

I do not believe the manufacturer' s had any say...it was strictly the

audiologist' s recommendation, and the physician's attempt to get insurance

approval.  In my case, right ear understood 20% single words, 70% in my left

ear.  My sister was totally deaf in her left ear, and had 100% understanding of

words in her right ear with her hearing aid.  I got the Cochlear Freedom, she

got the Med El Opus (I think that is what they were implanting last September). 

Does that answer your question???  Why are you wondering about this??

And, , can I be your friend now???  Hmmm???  LOL

 

____________ _________ _________ __

From: " lkozlik@.... com " <lkozlik@.... com>

groups (DOT) com

Sent: Thursday, June 4, 2009 6:50:44 PM

Subject: CI Criteria

Hi everyone,

If someone is deemed a CI candidate " off label " (meaning that they do not fit

the standard criteria for candidacy of 60% or less in the better ear and 40% or

less in the poorer ear), do any of the CI companies have a final say in

determining who is a candidate?

In other words, if an audi declared someone a candidate, but they did not fit

the " standard " criteria, could any of the 3 implant companies refuse to provide

a CI?

I'm just asking this question for curiosity's sake. I do not know anyone who has

been implanted " off label. "

[Guest guest]

I find it interesting that there seems to be more of this out there.  I hope

that if doctors are in fact allowing people to get CIs when they are not meeting

the recommended criteria, it doesn't cause a backlash for future candidates.  If

you learn anything more about this I'd be interested in hearing about it. 

I know you were just putting out facts as you heard them...but for your

information I did not shop for a doctor who would implant me.  But I'm sure

there are people out there who are willing to do whatever it takes to improve

their hearing, and will shop around until they find a doctor willing to do the

surgery.  But, in the end, it is the patient who will be surprised, especially

if they had residual hearing in the ear to be implanted and they lose it all.  I

didn't have much that was worth keeping, and it was a major hit to me when I

found out what it was like to lose all of it.  But, what I gained with the

implant is so much more than what I had before, so it was a willing sacrifice.

I'm surprised you were considered borderline with that type of hearing loss.  I

was considered moderate to severe in my left, and profound in my right.  But I

was also told that 3 years prior, which would have been 2004, I would not have

even been considered for CI surgery.  So it is amazing how things are changing

from year to year.

But, even if you were borderline, the fact that you are blind should also be

taken into consideration.  It is bad enough to have one sense taken away, but

when you have to struggle even more with two senses at a disadvantage, well, I

just think it should be considered as well - in other words, consider all parts

as a whole, not just the hearing.

Just my 2 cents...    Have a great day...I hope you find a way to get your

allergies under some semblance of control.    

 

________________________________

From: " lkozlik@... " <lkozlik@...>

Sent: Friday, June 5, 2009 5:33:37 PM

Subject: Re: CI Criteria

,

I asked this question because someone on a deaf and HoH message board claimed

that people with as much as 80% speech discrimination with hearing aids were

being declared CI candidates. I didn't know if this was true or not, so I

thought I'd ask the list. Again, I am not making any judgements about off label

or boderline candidates. I was borderline myself due to the fact that I had

profound hearing loss in my left ear and severe-profound in my right ear. My

speech discrimination aided was 8% for my left ear and 22% for my right.

P.S. You can be my friend anytime. <smile> LOL.

[Guest guest]

,

According to my audi and CI surgeon, I was considered an " excellent " candidate

for CI.

The reason why I said I was a borderline candidate is because people with

severe-profound hearing loss have more residual hearing than those who have

profound loss. Hence, my terminology.

I may not have actually been a borderline candidate, but that's the way it

appears to me since I did have some residual hearing in my right ear (90 dB at

250 Hz with NR at 1000 Hz and above).

[Guest guest]

and too,

I do believe its time we all meet for mochas. Be good to compare our

CI experiences and just enjoy the hearing we got back.

(Not sure what flavor I want, you choose!)

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

Beauty is only a light switch away.

& Dreamer Doll ke7nwn

E-mail-

rclark0276@...

Home Page-

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

[Guest guest]

,

 

No worries  

I had emailed Jim when I first came on board so I think he was talking about me

in his email.

 

Lori

From: lkozlik@... <lkozlik@...>

Subject: Re: Re: CI Criteria

Date: Friday, June 5, 2009, 2:04 PM

Lori,

I hope I don't sound rude, but I wasn't referring to you. The cases I mentioned

were those that were quoted by someone on another deaf and HoH message board.

Since there weren't any names mentioned, I don't know if this person was talking

about you or not. Please be aware that I do not make any judgements one way or

the other about a person's candidacy for CI. If they wish to be implanted, I say

more power to them.

[Guest guest]

Hi ,

I think not being able to hear in noise is one of the new criteria for a CI. My

audiologist used that with other criteria to qualify me for going bilateral.

Jim

>

> And, now that I'm caught up with reading all the emails...I believe one of the

things my CI team considered was the fact that I had difficulty hearing in

noise.  That was one of the things I brought up at my appointments...how I

couldn't participate/hear in social settings, meetings at work, and conferences

I had to attend to maintain my continuing education credits for work. 

>

> So there you haven it.  [feeling lonely from lack of friends....aside from

....hey , thanks for the vote of confidence. Here's a mocha for

you...what flavor would you like???  Hmmmm????...]

>  

>

>

>

>

> ________________________________

> From: Kinsella <jmkinsella55@...>

>

> Sent: Friday, June 5, 2009 5:24:20 PM

> Subject: Re: CI Criteria

>

>

>

>

>

> Oh, geez, , I thought you knew me!  LOL  I am " off label " , if that is what

you want to call me.  Actually, my surgeon and audiologist call me and my sister

" atypical " CI candidate, meaning that we did not meet the criteria, but

they felt the CI would help us and that we would be good candidates.

>

> I do not believe the manufacturer' s had any say...it was strictly the

audiologist' s recommendation, and the physician's attempt to get insurance

approval.  In my case, right ear understood 20% single words, 70% in my left

ear.  My sister was totally deaf in her left ear, and had 100% understanding of

words in her right ear with her hearing aid.  I got the Cochlear Freedom, she

got the Med El Opus (I think that is what they were implanting last September). 

>

> Does that answer your question???  Why are you wondering about this??

>

> And, , can I be your friend now???  Hmmm???  LOL

>  

>

> ____________ _________ _________ __

> From: " lkozlik@... com " <lkozlik@... com>

> groups (DOT) com

> Sent: Thursday, June 4, 2009 6:50:44 PM

> Subject: CI Criteria

>

> Hi everyone,

>

> If someone is deemed a CI candidate " off label " (meaning that they do not fit

the standard criteria for candidacy of 60% or less in the better ear and 40% or

less in the poorer ear), do any of the CI companies have a final say in

determining who is a candidate?

>

> In other words, if an audi declared someone a candidate, but they did not fit

the " standard " criteria, could any of the 3 implant companies refuse to provide

a CI?

>

> I'm just asking this question for curiosity's sake. I do not know anyone who

has been implanted " off label. "

>

>

>

>

[Guest guest]

Lori,

Allright. Thanks. <smile>

[Guest guest]

,

It would be awesome if I could meet you and (or anyone else here on

) in person over mochas. I'd love to share CI experiences with you. I'd

also love to see your baby Dreamer doll as well. As for which mocha flavor to

choose, that's easy. Pick my favorite -- strawberry. LOL.

[Guest guest]

- wow.  My residual hearing in my implanted ear was .... I went and got my

audiogram to make sure I have the facts straight...250K 55 dB, 750K 65 dB, 1000K

90 dB, 1500K NR.  So I guess losing what I had was more noticeable.  But, what I

did have never was usable with a hearing aid all my life, and of course, without

a HA I couldn't rely on it for speech.  So I am much better with the CI.

Thanks so much for sharing your audiogram.  This really gives me a better

picture of what you had prior to implantation.

Hope you are feeling better today. 

 

________________________________

From: " lkozlik@... " <lkozlik@...>

Sent: Friday, June 5, 2009 9:23:55 PM

Subject: Re: CI Criteria

,

According to my audi and CI surgeon, I was considered an " excellent " candidate

for CI.

The reason why I said I was a borderline candidate is because people with

severe-profound hearing loss have more residual hearing than those who have

profound loss. Hence, my terminology.

I may not have actually been a borderline candidate, but that's the way it

appears to me since I did have some residual hearing in my right ear (90 dB at

250 Hz with NR at 1000 Hz and above).

[Guest guest]

....how about Turtle flavor....since you seem to be moving soooo ever

soooo slowly these days....LOL

 

________________________________

From: <rclark0276@...>

Sent: Friday, June 5, 2009 9:32:57 PM

Subject: Re: CI Criteria

and too,

I do believe its time we all meet for mochas. Be good to compare our

CI experiences and just enjoy the hearing we got back.

(Not sure what flavor I want, you choose!)

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

Beauty is only a light switch away.

& Dreamer Doll ke7nwn

E-mail-

rclark0276charter (DOT) net

Home Page-

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

[Guest guest]

Yes, Jim I think you are right.  My surgeon mentioned that since I was still

working, and, I work as an " auditor " (see the connection to auditory???  LOL),

it was important that I be able to hear in my profession.  So that also carried

some weight too.  But looking back on my appointments, I do remember telling

him how frustrating it was to sit around a campfire with friends and not be able

to understand what anyone was saying, therefore I would just go to bed, or

sitting in a meeting, and having to make sure I'm sitting where I can hopefully

see everyone's faces so if they speak, I could lipread, and heaven forbid if two

people decide they want to discuss on the side something, which would drown

everyone else out so I missed everything that was said, or spending hundreds of

dollars for a conference, flying, hotel, meetings, etc., and not be able to get

anything out of them because I couldn't network between meetings or during

dinners, and a lot

of times would miss what was being said during the meetings because I always

would sit up front, but if a member would speak from the back, they were too far

away to lip read...and if the speaker was a traveller, I would miss most of what

he/she was saying. 

So, yes, I think they are coming up with good reasons why people need

CIs.  Bilateral hearing helps tremendously.  My hearing isn't perfect and it

never will be, but the CI is just amazing at how much it helps my poor, tired

left ear to comprehend better what is being said.

Now today I have a plan to sit down for awhile and listen to my Sound and WAY

Beyond software, which I ordered right after it became available, loaded it on

my computer, but never had time to try it out!!!  Family is gone for the

weekend, the weather is cold and rainy, so today is THE DAY!!! 

Hope you are having a great day!

 

________________________________

From: jimak38 <j1meaves@...>

Sent: Friday, June 5, 2009 11:18:58 PM

Subject: Re: CI Criteria

Hi ,

I think not being able to hear in noise is one of the new criteria for a CI. My

audiologist used that with other criteria to qualify me for going bilateral.

Jim

>

> And, now that I'm caught up with reading all the emails...I believe one of the

things my CI team considered was the fact that I had difficulty hearing in

noise.  That was one of the things I brought up at my appointments. ..how I

couldn't participate /hear in social settings, meetings at work, and conferences

I had to attend to maintain my continuing education credits for work. 

>

> So there you haven it.  [feeling lonely from lack of friends....aside from

....hey , thanks for the vote of confidence. Here's a mocha for

you...what flavor would you like???  Hmmmm????... ]

>  

>

>

>

>

> ____________ _________ _________ __

> From: Kinsella <jmkinsella55@ ...>

> groups (DOT) com

> Sent: Friday, June 5, 2009 5:24:20 PM

> Subject: Re: CI Criteria

>

>

>

>

>

> Oh, geez, , I thought you knew me!  LOL  I am " off label " , if that is what

you want to call me.  Actually, my surgeon and audiologist call me and my sister

" atypical " CI candidate, meaning that we did not meet the criteria, but

they felt the CI would help us and that we would be good candidates.

>

> I do not believe the manufacturer' s had any say...it was strictly the

audiologist' s recommendation, and the physician's attempt to get insurance

approval.  In my case, right ear understood 20% single words, 70% in my left

ear.  My sister was totally deaf in her left ear, and had 100% understanding of

words in her right ear with her hearing aid.  I got the Cochlear Freedom, she

got the Med El Opus (I think that is what they were implanting last September). 

>

> Does that answer your question???  Why are you wondering about this??

>

> And, , can I be your friend now???  Hmmm???  LOL

>  

>

> ____________ _________ _________ __

> From: " lkozlik@... com " <lkozlik@... com>

> groups (DOT) com

> Sent: Thursday, June 4, 2009 6:50:44 PM

> Subject: CI Criteria

>

> Hi everyone,

>

> If someone is deemed a CI candidate " off label " (meaning that they do not fit

the standard criteria for candidacy of 60% or less in the better ear and 40% or

less in the poorer ear), do any of the CI companies have a final say in

determining who is a candidate?

>

> In other words, if an audi declared someone a candidate, but they did not fit

the " standard " criteria, could any of the 3 implant companies refuse to provide

a CI?

>

> I'm just asking this question for curiosity's sake. I do not know anyone who

has been implanted " off label. "

>

>

>

>

[Guest guest]

I think that doctors and audiologists are finally, in some cases, anyway,

deciding cases on an individual basis, with set number criteria set aside

when warrented. This is a GOOD thing, and gets the field closer to what

doctors do - treat the PERSON, not just the symptoms, ya' know? JMHO - Jackie

)

**************Stay connected and tighten your budget with a great mobile

device for under $50. Take a Peek!

(http://pr.atwola.com/promoclk/100122638x1221845911x1201401556/aol?redir=http://\

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[Guest guest]

,

Did you hear what said? I should get a Turtle mocha because I am

moving so slowly? I think when we get together I will have to do the Say

what? to her a lot. LOL

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

If you come to a fork in the road, take it.

--Yogi Berra

& Dreamer Doll ke7nwn

E-mail-

rclark0276@...

Home Page-

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

[Guest guest]

,

Turtle mocha? That's funny. LOL.

As for playing the " Say What " game, that's an idea. It's incredibly easy to

annoy people by asking them to repeat themselves time and time again. LOL.

I only have one question for you: What if it turns out that has the

patience of a saint? Me thinks you will need to come up with another

alternative. <grin>

, who is hoping did not hear what she just told . LOL.

[Guest guest]

,

Your hearing loss sounds alot like what I had back in 1985 after I started

wearing hearing aids. I had a moderately-severe loss and was still able to

understand speech with aids except in background noise or from a distance. I

also struggled to hear female voices. That being said, there is a huge

difference between you and I since I've had mild hearing loss since age 3 and my

hearing didn't become moderately-severe until age 14 or so. I was able to

continue using my hearing aids until age 24 when my loss reached the

severe-profound range. It was at that time my left ear was profound and my right

ear was severe-profound. I've never been able to rely on lipreading, so I was

very good at using my residual hearing from what all of my former hearing aid

audis (3 in 20+ years) have told me.