My middle-schooler is now a candidate for CI -HELP!

[Hear Again]

Why should I when I have made soooo many posts about both kinds of CI users?

Because the OP and others on the board may not have seen those posts and therefore may be unfamiliar with your views.

 

[shel90]

Because the OP and others on the board may not have seen those posts and therefore may be unfamiliar with your views.

I cant always keep track of who is who is here. I am not around here often. They can always ask if they really want to know and I would be more than happy to answer or clarify.

The point is, if someone wants to speculate that I am anti-Ci, they are welcome to but they will be wrong so it does nobody good anyway.

 

[Hear Again]

The point is, if someone wants to speculate that I am anti-Ci, they are welcome to but they will be wrong so it does nobody good anyway.

I don't know about others, but I'm not speculating either way.

 

[Daredevel7]

So... in conclusion, Shel90 is very anti-CI.



KIDDING KIDDING!!!!!! Put the guns away people....

 

[lovezebras]

You could always get a CI(or second one) with your own out of pocket money, most surgeons won't refuse you. It's insurance companies that are the problem. They aren't charities but in the business to make a profit.

How many people can afford $50,000+ for CI surgery not to mention the mappings that are required post-surgery?

Ya I have a hard enough time paying off my hearing aids that cost a lot for me as well as trying to find some type of grant I can apply for to learn ASL...I don't have an extra 50+ grand lying around! I'm sure it is a bit more expensive probably here in canada as well.

 

[lovezebras]

If you agree that people who are completely deaf in one ear should be able to have CIs, why don't you think those with hearing in both ears who have 50% or less speech comprehension should have them as well?

I know that's to deafdyke and not me but I think that anyone who's speech discrim is lower or someone that has a higher loss should obvs shud get implanted before someone with just one sided severe+ loss should...just for the record ...i mean for anyone who wants CI** not anyone who's severe/profound.

 

[Hear Again]

I know that's to deafdyke and not me but I think that anyone who's speech discrim is lower or someone that has a higher loss should obvs shud get implanted before someone with just one sided severe+ loss should...just for the record ...i mean for anyone who wants CI** not anyone who's severe/profound.

for clarifying your stance, Alicia.

 

[Hear Again]

Ya I have a hard enough time paying off my hearing aids that cost a lot for me as well as trying to find some type of grant I can apply for to learn ASL...I don't have an extra 50+ grand lying around! I'm sure it is a bit more expensive probably here in canada as well.

Exactly. I've read estimates that say the cost of a CI pre and post surgery (i.e. CI evaluation, surgery, mappings) exceeds $100,000 during the first year someone is implanted.

 

[overthepond]

Ladies, Ladies.... tone down... This is not a tennis match.

Subject: Person does not benefit from CI.

pro-CI person: "He most likely didn't do the mapping/adjustments and probably wore it just for a short time."

anti-CI person: "When are people going to realize that CI is NOT a miracle? It doesn't always work. And this is just another indication of proof."

Being a pre-lingually profound deaf person who just got the CI, I can see where both sides are coming from. However, I have to say that I lean towards the pro-CI side because if I stopped therapy right now, I only got the benefit of hearing a lot of environmental sounds but still little speech discrimination. And it's been 3 months. I can see why people would give up by now....

Sweet Daredevel7 had hit the nail here. As pre lingually deaf, implanted at 30, it had been hard 6 months, Now i am 7 months ci user, the levels of loudness, highs, lows had just started to leveling out..
We need to have low expectations, are aware of long hard slog, It takes time, patience and lot of training to make it work.

Besides I still can't hear my own name yet, it'll probably take years or months before i do. It had been 30 years of no response to people calling me. My brain needs time to adjust that someone is calling me. But that's not important... hearing something more than i could with HA's is.

 

[deafdude1]

How many people can afford $50,000+ for CI surgery not to mention the mappings that are required post-surgery?

Certainly not me. If I ever need(not just want) a CI and insurance won't approve, I stay deaf then, at least till a cure comes out that hopefully is alot less than $50,000.

A CI surgeon won't approve you willy-nilly just because you have $50,000+ burning a hole in your pocket. It's a waste of hospital resources to perform CI surgery on people who don't really need it. Hospitals lose a significant amount of money for each CI surgery they perform. My CI center (the largest in the Midwest) only implants 7 people/year for this reason.

It could be possible a person has too much residual hearing and speech perception for insurance to approve or that person wants to go bilateral which insurance rarely approves. I didn't know that hospitals lose a significant amount of money for each CI surgery they perform. Do they also operate on a loss for other types of surgeries? Do the tax payers fund the hospitals? Interesting that your largest CI center implants just 7 people annually! Howcome so many already have a CI(or two) and so many more need(or even just want) a CI? There are people with much better hearing(that isn't a progressive loss) than me that want a CI and they try and see if they are candidates so they can upgrade from HAs to CIs.

Where do people get the idea that insurance companies take CI approvals lightly? The truth is, they don't. They require extensive information to prove a CI is medically necessary.

Some people with better hearing than me get approved in weeks. If insurance companies wanted to be strict, they wouldn't lower their criteria over the years. Theres one lady I know with only 55db sloping hearing loss that's trying to get a CI. She said last year she was happy with HAs and wasn't interested in CI but since standards became more lax, she's trying to become a candidate. :roll:

Good. It SHOULD be a long process. Well.....actually wait. For those who clearly and consistantly have never receieved any benifit from HA, they should be able to be approved for CI right off the bat. They should NOT have to go through heck to get it. BUT, what you don't realize is that there are some parents out there who think that the CI is TEH ANSWER to Life the Universe and everything. Ever hear of off label use of medical products or devices? It happens. In a society where we are told to have the " Detrol Discussion" with our docs or where we're taught to think that docs have ALL the ANSWERS. Gotta have the latest devices/medications etc.
And the thing is, the CI does seem to be really hyped out there.
There's nothing wrong with promoting it, but it does seem in the last few years that the promoting is akin to what was seen with the promotion of digital aids back in the 90's.

I know, it's crazy! read my above posts too.

Actually, our surgeon held a commitee meeting to decide if Miss Kat was candidate, whereas the insurance received the paperwork Friday and approved her Monday. Don't make blanket statements about things you are obviously uninformed about.

As for "nothing" I meant speech access. And I would love to speak to those people who have worse hearing with a CI than they did with aids.

So the approval only took the weekend? I notice that CIs are all about getting the best speech perception. That still takes alot of work and training. Ive replied to you in another thread. Ill be sure to post about anyone I find who didn't find their CI an improvement over HAs. Theres tons of us not rushing to get CI due to various risks.

Right now, I hear worse with the CI than with the HA for many things. 2 months ago, I heard worse with the CI than the HA for almost everything. I got activated 3 months ago.

Check back with me after 6 months of therapy sessions/adjustments.

I seriously wish you luck and hope your CI makes environmental sounds louder and speech clearer than what you had with HAs. What was your unaided/aided audiogram with HA and now with CI? Have you gotten your aided CI score down to 40db yet and any idea what's the best potental?

I know some people who got a CI and really couldnt get any benefit at all from them. *shrug*

This is why I am surprised at some of the borderline/ambigious candidates who go ahead with CI. I could understand someone with 120db HL being very likley to see a significent improvement with CI but someone else with only 60db HL? I would actually be surprised if CI was better than HA for only a moderate loss!

But they were doing great with hearing aids??

Many of them were, they thought a CI would be an "upgrade" and they had to get the latest and greatest. If insurance somehow approved them, the cost would be little or nothing for them. They hear mostly positive CI stories so they assume their's will be a success too. I know a lady whos happy with her HAs but is still trying to become a CI candidate. :roll:

I dont question them about their background about their CIs..just know quite a few people, both adults and small children who got nothing, I mean, nothing from their CIs...even calling out their names...nothing. Just saying that there are people out there like that while there are others who have good benefit from them.

without questioning them for personal information or medical records, just off the top of your head, what % benefit from CI, what % didn't get enough from CI and what % got no benefit? I am worried for some of my friends who think CIs are "guaranteed" to work great.

 

[Daredevel7]

I seriously wish you luck and hope your CI makes environmental sounds louder and speech clearer than what you had with HAs. What was your unaided/aided audiogram with HA and now with CI? Have you gotten your aided CI score down to 40db yet and any idea what's the best potental?

Thanks deafdude, My unaided audiogram showed 90-100 db on one ear and 100-110+ for another ear across most low frequencies (can't hear high freq at all). Aided with HA showed an increase to 30-40 db. Now with the CI I hear between 10-20 db across ALL normal speech frequencies! Kinda insane actually. I definitely hear more with the CI, but sounds are more familiar to me with the HA for now.

I am not sure what you mean by the best potential. Do you mean what I think I could do in the future (higher speech discrimination) or higher gain? Obviously I can't get a higher gain because hearing 10dB is just a bit too insane. I am not sure about speech discrimination, but I am sure about one thing, I definitely can distinguish between more letters than before due to the fact I can FINALLY hear high frequencies now! (t, f, p, s, sh, etc!)

I am worried for some of my friends who think CIs are "guaranteed" to work great.

This is one of the reasons why I am a bit apprehensive when I hear that someone does not benefit from the CI. I mean, if it weren't for the doctors assuring me "It's a process, that could take years. It's not going to be like WOW!!! at the beginning." When I got activated, I barely heard.. ANYTHING. And when I did hear something, it was too loud (overstimulation) and it made me cringe. So imagine getting that experience with the "CI is guaranteed to work great!" frame of mind.....

 

[Hear Again]

When I spoke to my CI surgeon about getting an implant, he warned me that it may take some time for me to be able to understand speech with my CI due to the fact that I had severe-profound hearing loss for 10 years prior. To my surprise, it only took 2 weeks following activation before I could understand a few words. By 3 months post-activation, I was no longer using a tactile interpreter.

 

[Hear Again]

It could be possible a person has too much residual hearing and speech perception for insurance to approve or that person wants to go bilateral which insurance rarely approves. I didn't know that hospitals lose a significant amount of money for each CI surgery they perform. Do they also operate on a loss for other types of surgeries? Do the tax payers fund the hospitals? Interesting that your largest CI center implants just 7 people annually! Howcome so many already have a CI(or two) and so many more need(or even just want) a CI? There are people with much better hearing(that isn't a progressive loss) than me that want a CI and they try and see if they are candidates so they can upgrade from HAs to CIs.

As far as my CI center is concerned, from what my former audi told me, she had people with moderate hearing loss come in all the time for a CI evaluation. Every time they did, she turned them down and asked them to come back when their hearing fell into the severe-profound range or worse.

The reason why so many people have CIs while more do not is because not everyone wants to have a CI or even knows about them. I read a statistic which said that 20,000 people (adults and children) in the U.S. qualify for CIs, but don't have one because they are unaware of the technology.

 

[Hear Again]

Some people with better hearing than me get approved in weeks. If insurance companies wanted to be strict, they wouldn't lower their criteria over the years. Theres one lady I know with only 55db sloping hearing loss that's trying to get a CI. She said last year she was happy with HAs and wasn't interested in CI but since standards became more lax, she's trying to become a candidate.

...and some people don't. You know what kind of hearing I had pre-CI yet it took me 8 months between my first CI evaluation and surgery. There was a problem with testing equipment which didn't come back from repair, so that played a factor. I also had to have an ABR to rule out auditory neuropathy given my premature birth history.

Medicaid took 8 weeks to approve my CI, so that didn't help matters.

The time period between my second CI evaluation and surgery was much shorter. I was evaluated in September, approved for surgery by Medicaid in December and had surgery in February. This may be due to the fact that my CI surgeon and audi put me on a "fast track" since I was deafblind and had no other means of hearing if my first CI stopped working.

 

[shel90]

This is why I am surprised at some of the borderline/ambigious candidates who go ahead with CI. I could understand someone with 120db HL being very likley to see a significent improvement with CI but someone else with only 60db HL? I would actually be surprised if CI was better than HA for only a moderate loss!






without questioning them for personal information or medical records, just off the top of your head, what % benefit from CI, what % didn't get enough from CI and what % got no benefit? I am worried for some of my friends who think CIs are "guaranteed" to work great.

Off the top of my head..gosh, I have been involved with the Deaf community for over 10 years and have met several CI users so I would say about 70% did benefit (*note..benefit is based on the person's stastifaction with their CIs..could be anywhere from hearing some sounds to hearing speech) and about 30% didnt.

There is one guy I know who can hear the birds singing and other environmental sounds but cant hear when someone is calling his name. He got his CI in his 30s but I dont know his experience with auditory input. He tells people that he got no benefit from his CI so I am assuming that he had more expectations than being able to hear birds sing and etc. It is just speculation on my part based on what he said.

Got this article but for some reason, my computer cant download the whole thing...


Can Every Patient With Severe to Profound Sensorineural Hearing Loss Benefit from a Cochlear Implant?

Many people of all ages with many different kinds and patterns of hearing loss can qualify for cochlear implantation.

Unfortunately, not everyone can benefit from using a cochlear implant. Some forms of sensorineural hearing loss are a result of destruction of or absence of the auditory nerve fibers. Therefore, there is nothing for the cochlear implant to stimulate. In other forms of hearing loss, structural abnormalities of the inner ear prevent surgical implantation. In many forms of sensorineural deafness, the status of the auditory nerve fibers is unknown. In such cases, it can be difficult to predict the potential benefit of receiving a cochlear implant. Currently, researchers are studying the role of auditory nerve fiber survival to better predict performance before implantation. The duration of hearing loss and the age at which it occurred also seem to influence performance with an implant.

http://www.umm.edu/otolaryngology/cochlear.htm


Cochlear implants do not restore normal hearing, and benefits vary from one individual to another. Most users find that cochlear implants help them communicate better through improved lipreading, and over half are able to discriminate speech without the use of visual cues. There are many factors that contribute to the degree of benefit a user receives from a cochlear implant

http://www.entnet.org/HealthInformation/cochlearImplants.cfm[/url[/B]]

 

[Hear Again]

As for the article Shel posted, if a person has a nonfunctioning auditory nerve, they could always qualify for an ABI (auditory brainstem implant). It works similarly to a CI except that the brainstem is stimulated instead of the auditory nerve.

 

[faire_jour]

Off the top of my head..gosh, I have been involved with the Deaf community for over 10 years and have met several CI users so I would say about 70% did benefit (*note..benefit is based on the person's stastifaction with their CIs..could be anywhere from hearing some sounds to hearing speech) and about 30% didnt.

There is one guy I know who can hear the birds singing and other environmental sounds but cant hear when someone is calling his name. He got his CI in his 30s but I dont know his experience with auditory input. He tells people that he got no benefit from his CI so I am assuming that he had more expectations than being able to hear birds sing and etc. It is just speculation on my part based on what he said.

Got this article but for some reason, my computer cant download the whole thing...


Can Every Patient With Severe to Profound Sensorineural Hearing Loss Benefit from a Cochlear Implant?

Many people of all ages with many different kinds and patterns of hearing loss can qualify for cochlear implantation.

Unfortunately, not everyone can benefit from using a cochlear implant. Some forms of sensorineural hearing loss are a result of destruction of or absence of the auditory nerve fibers. Therefore, there is nothing for the cochlear implant to stimulate. In other forms of hearing loss, structural abnormalities of the inner ear prevent surgical implantation. In many forms of sensorineural deafness, the status of the auditory nerve fibers is unknown. In such cases, it can be difficult to predict the potential benefit of receiving a cochlear implant. Currently, researchers are studying the role of auditory nerve fiber survival to better predict performance before implantation. The duration of hearing loss and the age at which it occurred also seem to influence performance with an implant.

Cochlear Implant


Cochlear implants do not restore normal hearing, and benefits vary from one individual to another. Most users find that cochlear implants help them communicate better through improved lipreading, and over half are able to discriminate speech without the use of visual cues. There are many factors that contribute to the degree of benefit a user receives from a cochlear implant

http://www.entnet.org/HealthInforma...he bolded cases they would not be candidates.

 

[Daredevel7]

That's what I was thinking. Isn't what the MRIs are for? To see any damages in the auditory nerve?

 

[Hear Again]

That's what I was thinking. Isn't what the MRIs are for? To see any damages in the auditory nerve?

Yes. That or a CT scan.

 

[Almyra]

Answering OP's questions:

The technology has advanced tremendously in the last ten years. Some insurance companies now have a standard for determining eligibility which makes it easier to get the surgery approved.

If your daughter is willing to do therapy on a regular basis, and you are willing to take her in for mappings she can go fairly far with the CI. At 8, she has the advantage of spending more time on therapy than she would at a later age. She would need to understand that in most cases obtaining the CI is not like donning a pair of eyeglasses. She needs to retrain her brain.

You sound like a caring parent who wishes to involve your daughter in the decision-making progress. Kudos to you...