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Unread 08-02-2007, 01:42 PM   #1 (permalink)
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Exclamation which hearing aid is best for profound hearing loss?

i want to know what hearing aid is best for profound hearing loss? i went in to discuss about cochlear implant but they told me they dont do cochlear implant so they only did hearing test and speech recognization stuff and i got about 70% on that and my hearing loss dropped dramatically i didnt know i was THAT deaf i went in originally to ask if i can get one in my bad ear (100 db loss) while thinking my good ear was only 50 db and get new hearing aid for good one but boy was i wrong i lost 40 db more now good ear is 90-95 dont rememer db loss and bad ear is 105 now. so now they tell me i am good canditate for cochlear implant but want makes sure by sending me to another ear nose throat doctor and turned out he dont do cochlear impant either ugh wasted my tme waiting for 3 months just to ask and he was asshole anyways he gives me attitude and look me down like i was dumb and dont believe me that i still remember alot sound and used to listen to people and understand what they're saying nd that i used to be able to speak clearly at 8 that speech therapist dropped me but i never used it (i was painfully shy as child) he snubbed at me and ordered me to get hearing test AGAIN i was like 'why?? cant youask other doctordownstair to get their copy? but whatever he sent me to new ear nose throat doctor which supposely be specialist of cochlear implant so we will see if he was right his time i dunno but he makes it sound like i wont get one anyways because at first he said im too late (im 19) and i have ZERO speech recognization and CANT speak but that was total bull i told him 'HEY i can talk and understand!" and i proved by speaking and he was like 'oh... ok so if you recognize enough speech with hearing aid thats adjusted to be loudest possible then you wont get CI" i was pissed off its not fair i thought person with good memory of speech and sound but profound hearing loss in both ear will be best canditate but turned out seem like only prelingually deaf is better even if they wont learn anything! but my new ENT doctor apt to talk about it (again for 3rd time to see if i can even get one) isnt until september then hopefully get cat scan (they keep reschedule it) soon after new ent appt and then after that she will makes appt to even get m ear fitte for earmold to do hearing aid trial to see if it work "better" than what CI can do for me (doesnt makes senses huh?) and then start even considering CI im so frustrated now so i want to know if there is any best hearing aid thats super clear and can hear tone, pitch and clarity of each word i remember my experience when i had my hearing before it went completely deaf that hearing aid was horrible, feedback when i laugh or smile, blurry staticky fuzzy sound 24/7 makes it very difficult for me to listen through fog to recognize some word sound and i cant tell if i said some stuff rght anymore because it sound all same idk why and i cant even hear tv or phone its loud buzz noise so any brand that is good for PROFOUND hearing loss with minimum problem of what i've said above because im starting to lose my hope on getting CI
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Unread 08-02-2007, 02:22 PM   #2 (permalink)
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A CI would be the best option otherwise I may suggest Oticon Sumo XP super power hearing aid or Siemens Centra SP .There may be more options . the Sumo DM has highest power and light design and active feedback cancelling system. The Siemens Centra SP additionally has directional microphones that may improve listening comfort in noisy situations.

Sumo DM : Oticon Sumo DM

Siemens Centra SP : http://mysiemens.siemens-hearing.com...ents/08191.pdf

An important point to add is that these digital hearing aids should be carefully programmed otherwise the benefit could be significantly decreased.

hope this helps
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Unread 08-02-2007, 10:23 PM   #3 (permalink)
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Did you have good speech recognition before your hearing got worse?
There are a couple of folks here who were hoh with hearing aids, but then they lost their residual hearing, and went to CI. I know it seems to be a pain, but , experimenting with HAs might be good, so that you might be able to use something in the unimplanted ear.
How long has it been since you wore a HA? You might find that your hearing responds well with a particualr brand or type of hearing aid. I know someone who had NO response to sound even with a body worn aid (this was 80's) and then she tried a digital and got some speech response! I think its definitly worth it to experiment with aids. You might be surprised. And yes, I would opt for trying out superpower aids. Oticon and Phonaks are awesome brands! You might even try asking for a pocket aid (new name for body worn aid) and see if you're one of the ones who get some benifit from HA, but even more from body worn aid.
I had a feeling that it was going to become harder to get implanted. I really think that the small percentage of "gotta have newest technology" folks kind of ruined the ease of getting approved easily for CI. Insurance companies and doctors are now being a lot more parsimmonous, b/c they think that people who want CI, are the types who want brand name stuff instead of generic stuff.
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Unread 08-02-2007, 10:41 PM   #4 (permalink)
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Insurance companies and doctors are now being a lot more parsimmonous, b/c they think that people who want CI, are the types who want brand name stuff instead of generic stuff.
DD,

Can you elaborate on this? What do you mean that CI candidates want "brand name stuff instead of generic stuff?" By generic, are you referring to body or transpositional aids?

Personally, I've never heard of a CI candidate who sought a cochlear implant because they wanted a brand name device.
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Unread 08-03-2007, 12:06 AM   #5 (permalink)
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maybe mean that they assume the patient would be willing to pay for higher end model of hearing aid that has much higher cost therefore passing on commission to audiologis/ hearing aid dealer, whereas they not making money because they not doing CI surgery.
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Unread 08-03-2007, 12:38 AM   #6 (permalink)
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Originally Posted by SkullChick View Post
but whatever he sent me to new ear nose throat doctor which supposely be specialist of cochlear implant so we will see if he was right his time i dunno but he makes it sound like i wont get one anyways because at first he said im too late (im 19) and i have ZERO speech recognization and CANT speak but that was total bull i told him 'HEY i can talk and understand!" and i proved by speaking and he was like 'oh... ok so if you recognize enough speech with hearing aid thats adjusted to be loudest possible then you wont get CI" i was pissed off its not fair i thought person with good memory of speech and sound but profound hearing loss in both ear will be best canditate but turned out seem like only prelingually deaf is better even if they wont learn anything!
Yes what he said to you does sound archaic. There are plenty of us pre-liingual adults like you here on this board who have benefited greatly from our CIs as adults. It's good that you have been refered to another ENT.


Quote:
but my new ENT doctor apt to talk about it (again for 3rd time to see if i can even get one) isnt until september then hopefully get cat scan (they keep reschedule it) soon after new ent appt and then after that she will makes appt to even get m ear fitte for earmold to do hearing aid trial to see if it work "better" than what CI can do for me (doesnt makes senses huh?) and then start even considering CI
I know it's hard but just play the game. Try the hearing aids that they suggest and then promptly return them as soon as you know for sure that you're not getting the clarity to help you. Make sure that you ask them to do speech recognition tests in the booths so that you have something concrete to show that you aren't doing very well with aids. They are just making sure that you cannot benefit from hearing aids first because the CI operation is irreversible and you will lose your residual hearing. Insurance companies also require clinics to show that there are no other alternatives before they will fund a CI and you are more likely to have success with the insurance company if it can be shown that you tried out hearing aids with no success. It's all part of a standard elimination process.

Many of us too had to trial hearing aids before we could get approval for our CIs.

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i cant tell if i said some stuff rght anymore because it sound all same idk why and i cant even hear tv or phone its loud buzz noise so any brand that is good for PROFOUND hearing loss with minimum problem of what i've said above because im starting to lose my hope on getting CI
From what I can see there isn't that much difference in quality in hearing aids designed for profound losses. If one hearing aid sounds absolutely dreadful then you are probably not going to find another hearing aid also designed for your loss that sounds crystal clear and razor sharp. Maybe SteveAUD can have something to say about that?
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Unread 08-03-2007, 01:30 AM   #7 (permalink)
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It sounds like your ENT is not as informed about CIs as they should be. The only way to know for sure if you are a candidate is to be evaluated at a CI center. GOOD LUCK. I would try SUMO DMs, they are STRONG!
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Unread 08-03-2007, 03:14 AM   #8 (permalink)
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If you're interested in locating a CI center in your area, visit:

Cochlear, innovator of the Nucleus Freedom cochlear hearing implant system

and click on the link (located at the upper right hand corner of the page) that reads "Find a Clinic."
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Unread 08-03-2007, 03:25 AM   #9 (permalink)
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Originally Posted by hohDougRN View Post
maybe mean that they assume the patient would be willing to pay for higher end model of hearing aid that has much higher cost therefore passing on commission to audiologis/ hearing aid dealer, whereas they not making money because they not doing CI surgery.
Doug,

That very well could be. While I can understand why people do this, I would also hope that they would consider puchasing less expensive HA brands since they can be just as good -- if not better -- than the high priced brands.
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Unread 08-03-2007, 10:17 AM   #10 (permalink)
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Skullchick,

My hearing loss is very similar to yours (107db loss in left ear with no speech discrimination and 98db loss in right ear with only 23% speech discrimination believe) and I can tell you that I have experimented with several different types of hearing aids and I can hear mostly environmental sounds, very little speech discrimination. I just gave up on trying them out. They did nothing for me.

I have two audiologist who are primarily just hearing aid dispenser tell me I am not a candidate. Truth be told they are not a viable source of information to tell you whether you are a candidate or not. When my hearing started going, I called a third audiologist that I never seen before to ask him about a stronger hearing aid and the possibility of cochlear implants. He flat out told me because of the way I speak on the phone that I would not be a candidate. That give you an idea of how quick they are to get money in their pocket by providing the "latest" technology.

Guess what? I am a 27 year old candidate and a very good one. I would suggest that you make sure that the hospital that you are going to is a cochlear implant clinic. Have someone call the doctors office and make sure that he does cochlear implants and has a history of doing them before you waste any more time. The surgeons tend to have their own private audiologist that specialize in this field. The process will take a while. I had to have the surgeon audiologist do a test, then a cat scan and a mri, and a balance test, and another type of hearing test and another visit with the surgeon before I got told I was a candidate.

goto the different cochlear implant providers websites and do some research so when you go in there you can show them that you are not "dumb" and etc. If there is anything I hate it is being talked to like I am dumb. Arm yourself with knowledge and I wish you the best of luck with what ever route you take.

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Unread 08-03-2007, 10:54 AM   #11 (permalink)
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Quote:
Originally Posted by deafdyke View Post
I had a feeling that it was going to become harder to get implanted. I really think that the small percentage of "gotta have newest technology" folks kind of ruined the ease of getting approved easily for CI. Insurance companies and doctors are now being a lot more parsimonious, b/c they think that people who want CI, are the types who want brand name stuff instead of generic stuff.
I am curious, how did you arrive at your conclusion that small percentage of gadget freaks ruined the ease of getting approved for a CI? Furthermore, you arrive that it is a factor in why insurance companies and doctors are adapting a "less is better" attitude because a people who are seeking information and candidacy for a cochlear implant strive for brand name vs. generic "stuff". I am under the assumption in this example that brand name would be cochlear implants and generic represents hearing aids.
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Unread 08-03-2007, 02:15 PM   #12 (permalink)
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Quote:
Originally Posted by Hear Again View Post
If you're interested in locating a CI center in your area, visit:

Cochlear, innovator of the Nucleus Freedom cochlear hearing implant system

and click on the link (located at the upper right hand corner of the page) that reads "Find a Clinic."
i second that.. there is like an average of 2 to 3 centers in each state.. so its impossible to go to every ENT hoping they have it..

also that website telling CI center is not only for Nucleus.. also for other brands if they provide one.. most centers provide AVB and Nucleus.. some offer med-el..
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Unread 08-03-2007, 06:17 PM   #13 (permalink)
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When my hearing started going, I called a third audiologist that I never seen before to ask him about a stronger hearing aid and the possibility of cochlear implants. He flat out told me because of the way I speak on the phone that I would not be a candidate.
He told you that while you were conversing on the phone, thereby demonstrating your oral receptive skills? That's so bizarre!

It makes you wonder if there are a lot of people who would benefit from a CI but who are turned away in this manner by inept professionals. Most of them would probably not think to question their advice.
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Unread 08-03-2007, 09:51 PM   #14 (permalink)
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contradica, I was just putting out a hypothesis. I do remember a couple of years ago (on another msg board) a mom with two boys with a lot of residual hearing (but profound loss) saying that the surgeon who implanted her boys was now implanting a lot of people with a lot of residual hearing.
It does frustrate me that people who are totally obvious canidates are having a lot of trouble getting implanted. They should........it would really help them!
Maybe I'm wrong and the reluctance is that they are still not too common, so when the insurance bureocrat sees the device.............
Quote:
Can you elaborate on this? What do you mean that CI candidates want "brand name stuff instead of generic stuff?" By generic, are you referring to body or transpositional aids?

Personally, I've never heard of a CI candidate who sought a cochlear implant because they wanted a brand name device.
Sorry for the confusion. It does seem that there's a small percentage of folks who are getting implanted b/c its the latest greatest technology, and b/c there's so much hype about CIs. Sort of like the folks who have to have the latest computer, or latest cell or whatever. I do think that the percentage of those are very small, and are probaly the same sort of people who believed the "digital hype. Remmy when digitals came out there were people who totally believed the digi hype? We still got a ton of people who wear analogs.
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Unread 08-03-2007, 11:11 PM   #15 (permalink)
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DD, for the love of god not this trendy device argument AGAIN! CI centers are not implanting anyone who wants a CI. There are FDA guidelines that must be followed. The current guidelines were established after it was shown that those with profound loss with CIs were hearing better than those with severe loss with hearing aids. Yes, people with more residual hearing are getting CIs but FDA guidelines MUST be followed.

You need to keep in mind that it is only a small percentage of those with Hearing Loss who would qualify for a CI. I read somewhere it was maybe 1% of those with hearing loss. Perhaps what you really mean to say is that if someone can hear anything with HAs they should not get a CI???

DD, Skullchick has not been evaluated for a CI yet and if they meet the criteria they will be a candidate.
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Unread 08-04-2007, 02:25 AM   #16 (permalink)
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Quote:
CI centers are not implanting anyone who wants a CI. There are FDA guidelines that must be followed. The current guidelines were established after it was shown that those with profound loss with CIs were hearing better than those with severe loss with hearing aids. Yes, people with more residual hearing are getting CIs but FDA guidelines MUST be followed.

You need to keep in mind that it is only a small percentage of those with Hearing Loss who would qualify for a CI. I read somewhere it was maybe 1% of those with hearing loss. Perhaps what you really mean to say is that if someone can hear anything with HAs they should not get a CI???
set2, on the other hand there's some wiggle room with FDA guidelines. Like those boys I mentioned could hear 70% with hearing aids, but they got implanted b/c their hearing without aids was 10% (speech reception)
I know that they're not implanting just anyone.........but I mean I know enough about off the label use of things to know that there might be some people who are really almost buying into the hype. Most people ARE taking the implant decision seriously..........and that's AWESOME!
What I meant to say is that maybe the implant teams and insurance companies saw a lot of people (who right off the bat weren't canidates) being evaluted needlessly for CI. So they might have taken that as a *meep meep*.....hold on this is an area we need to be careful about thing.
I know that they won't just give you a CI if you want one........I'm just hypothesizing.
After all, when CIs were still relatively new, the language used was almost "miricle cure"
I've heard of people and kids with respond well to hearing aid losses being evaluted for CI..........Just a hypothesis.
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Unread 08-04-2007, 04:21 PM   #17 (permalink)
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set2, on the other hand there's some wiggle room with FDA guidelines. Like those boys I mentioned could hear 70% with hearing aids, but they got implanted b/c their hearing without aids was 10% (speech reception)
I know that they're not implanting just anyone.........but I mean I know enough about off the label use of things to know that there might be some people who are really almost buying into the hype. Most people ARE taking the implant decision seriously..........and that's AWESOME!
What I meant to say is that maybe the implant teams and insurance companies saw a lot of people (who right off the bat weren't canidates) being evaluted needlessly for CI. So they might have taken that as a *meep meep*.....hold on this is an area we need to be careful about thing.
I know that they won't just give you a CI if you want one........I'm just hypothesizing.
After all, when CIs were still relatively new, the language used was almost "miricle cure"
I've heard of people and kids with respond well to hearing aid losses being evaluted for CI..........Just a hypothesis.
Why hypothesis? Either it's being done as you state or it's not. I can assure you that 99.99% of those getting the CI do not get it unless approval has been given by the insurance company they use. Very few of us are able to foot the 50 - 60,000 it would cost to be implanted. So while people might be tested who don't meet the qualifications (myself) we are doing so because we are seeking something better then LOUD. In my case I'm very grateful my drs. were willing to ask for an exception, believe me hearing in the 80%'s with a CI is much much better then the 70% I got with the HA's. (and yes they were new ones that should have benefited me)


You do seem to have a problem with new gadgets. Since you aren't paying for the gadget I really don't see why it bothers you when parents or adults seek better options. Ci's aren't trendy, they've been aroudn for awhile and they aren't going anywhere, like HA's they're here to stay.
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Unread 08-04-2007, 09:38 PM   #18 (permalink)
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DD, I also would like to see anyone who could benefit from a CI be able to get one. I think you identified one thing that might stop some people who could benefit from a CI from getting one. Not all CI centers are going to be as willing to try off label use as there are ethical issues and I am sure there is a lot more paper work. Fortunately, the criteria does change and eventually more people who can benefit will be able to get CIs.

As far as insurance companies getting alarmed over people going for CI evaluations I don't think that happens. First of all not all insurance companies pay for hearing tests which is what the audiological part of the CI evaluation is . Most people being evaluated for a CI don't get the CT Scan until after they have had the hearing tests so if they don't qualify audiologically they don't get a CT scan. The type of hearing test done during a CI evaluation should be done for anyone who wears HAs because the tests show how you do with HAs and can help audiologists optimize the hearing aids.

As far as the boys with 70% discrimination did they have any other issues like a progressive loss or tinnitus?
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