FDA-Shocking Results on CI Statically

[faire_jour]

I think it may have been another thread that I said this -- I do rely largely on lipreading. But I can hear/understand some words without. And others have said the same. I'm not saying that you're thinking none of us can, but it really is not a fact that the ability to listen and understand speech cannot be provided with hearing aids, as you previously stated.

My whole point is that a CI can provide the ability to follow a running conversation in spoken language without lipreading. I don't believe that hearing aids can for the profoundly deaf.

 

[C-NICE]

The conventional wisdom

The conventional wisdom is that hearing aids make the best of the hearing you have, the less you have the less hearing aids have to work with.

 

[AlleyCat]

My whole point is that a CI can provide the ability to follow a running conversation in spoken language without lipreading. I don't believe that hearing aids can for the profoundly deaf.

If that's really the case, then why, when a poll was posted here in another thread, that very few WITH a CI can carry on a phone conversation? The results of that poll showed 9 out of 14 are either "can't hear, barely, or can't hear at all" on the phone. And, as another poster said, he attended a Cochlear convention in which only 3 out of 50 can use the phone. We all know you can't lipread over the phone, that a phone conversation is based on spoken language, and that only.

Listen, I'm not disputing that it is incredibly hard for those of us with a severe-to-profound or profound loss to be able to hear/understand speech without lipreading. It IS difficult. I'm simply saying it is NOT a fact that we can't, as you stated. And until you become deaf yourself and have to resort to HAs and/or CIs, you cannot be in our shoes and tell us what we can or can't understand in spoken language.

 

[faire_jour]

If that's really the case, then why, when a poll was posted here in another thread, that very few WITH a CI can carry on a phone conversation? The results of that poll showed 9 out of 14 are either "can't hear, barely, or can't hear at all" on the phone. And, as another poster said, he attended a Cochlear convention in which only 3 out of 50 can use the phone. We all know you can't lipread over the phone, that a phone conversation is based on spoken language, and that only.

Listen, I'm not disputing that it is incredibly hard for those of us with a severe-to-profound or profound loss to be able to hear/understand speech without lipreading. It IS difficult. I'm simply saying it is NOT a fact that we can't, as you stated. And until you become deaf yourself and have to resort to HAs and/or CIs, you cannot be in our shoes and tell us what we can or can't understand in spoken language.

I am only speaking from what everyone here says. They are the ones that say that they can't understand spoken language without lipreading.

The phone doesn't transmit all the frequencies that human speech encompasses. That is another reason it is so difficult to hear on the phone. It is not just lipreading. Hearing people have to ask for clarification about spelling on the phone because the frequencies aren't all carried, so discrimination drops.

 

[shel90]

FJ, why are you arguing with those who have lived their lives as deaf people? I can hear speech and like AlleyCat, I can understand some words without lipreading and I depend a lot on my HAs to carry on converstaions. Without them, I can't lipread at all. You said HAs won't give deaf people access to spoken language at all. We are disputing that but yet, you keep questioning us as if we are the ones who are ignorant about your statement. U are the one who made it and we replied based by sharing our experiences so what's the debate here?

 

[jillio]

FJ, why are you arguing with those who have lived their lives as deaf people? I can hear speech and like AlleyCat, I can understand some words without lipreading and I depend a lot on my HAs to carry on converstaions. Without them, I can't lipread at all. You said HAs won't give deaf people access to spoken language at all. We are disputing that but yet, you keep questioning us as if we are the ones who are ignorant about your statement. U are the one who made it and we replied based by sharing our experiences so what's the debate here?

My son can as well. And he has been profoundly deaf since birth.

 

[dreama]

Exactly.

I do not feel it is important for my daughter to speak a spoken language. As long as she is confidently fluent in her chosen method of communication (ASL) and literate in at least 1 written language (preferably more, but I won't get my hopes up yet), I will be beyond pleased.

That's a really great attitude to have. I wish more parents of deaf children thought like this.

 

[Phi4Sius]

faire_jour:

My loss isn't progressive - it's stable and has been all these years luckily (knock on wood). My right ear fluctuates between 50 dB at 250 Hz (the only frequency to apparently be at 50 dB...everything else sharply decreases to 60-below) and 70 dB @ 250 Hz and below. Without my hearing aid - I can only hear speech when it is spoken loudly up against my ear (as in yelling very loud). I grew up with this severe hearing loss since I contracted a virus at 4 years old. I grew up on wearing a multitude of different hearing aids in my right ear and nothing in my left dead ear- and I've been able to function just fine. In fact, I'm one of the highest producing workers of my department at work. At college (a normal, oral college, mind you) I'm getting nearly all straight A's per semester - a more recent achievement with my upgraded level of motivation because I want to make something of myself. I also graduated High School with a diploma and a B average. I was never held back at all and graduated on time with everybody else. And I'm 100% oral.

With my latest digital hearing aid- I can understand 99.9% spoken language with ease - and much easier than I had with my analog. My most recent analog was an overamplified piece of junk that I had to get at the time earlier this year because I needed something to work on a consistent basis until I got a better digital. Little did I realize in my haste how horrible my analog US80-PP would have turned out to be.

And I can certainly tell a ton of different things. The time punch machine at work that emitted a soft beep - no way in hell would I have heard it with my analog. With my digital - I can hear that now. With my headphones on my computer, I couldn't listen to music because it wasn't loud enough with my analog - and it didn't sound right. With my digital and increased frequencies, music sounds normal, loud enough without overamplification, and sooo beautiful once again. My analog was a 4000 Hz HA. This new digital provides 6000 Hz of amplification.

The right hearing aid will ALWAYS make all the difference- and I still stand by that because my experience over my WHOLE LIFE with such a severe hearing loss has proven it to me (and everyone that knows me) TIME and TIME AGAIN.

 

[faire_jour]

FJ, why are you arguing with those who have lived their lives as deaf people? I can hear speech and like AlleyCat, I can understand some words without lipreading and I depend a lot on my HAs to carry on converstaions. Without them, I can't lipread at all. You said HAs won't give deaf people access to spoken language at all. We are disputing that but yet, you keep questioning us as if we are the ones who are ignorant about your statement. U are the one who made it and we replied based by sharing our experiences so what's the debate here?

I didn't say at all, I said that it would not provide the ability to understand spoken language by listening alone. If you can understand spoken language at conversation speed through listening alone, than perhaps I was wrong.

Is that what you are saying? That through listening alone, you can have a full conversation (at conversational level, speed, etc) with a random (barring weird stuff like accents and mumbling) person?

 

[Frisky Feline]

i suppose that it will happen the same thing with CI.

 

[Pinky]

I agree. I think it as a respect to both side, STOP! Alldeaf has been down this road so many times. Each side thinks they are right and in the end someone always gets banned. So stop, close this thread, and move on.

I second it!

 

[Pinky]

C-NICE, FJ, Sally, Vallve, I am with you!

I don't read whole the ugly posts expect first page. My friend sent a post of vlog on facebook. She was curious about CI. So I debate with her. She is interesting to hear from me. Other her friends agreed with me.

I am support CI children with ASL and other foreign sign language with spoken language. That's nothing wrong! The reason why parent wanted children to get ci because they will able to understand the spoken language and sign language and can go to college for good lifestyle. It will be easy for them to get job and make extra money. Otherwise parent wanted children with usher syndrome and deafblind to get CI too. It's safe their life from scary in environment.

For me, I have usher syndrome. I can't see in dark. It startles me many times. It was frustrate! I can't hear the car in background with HA. The hearing aids doesn't help me at all!

The children with retinitis pigmentosa with hearing loss in rare genetic disorder can get CI. It's common to usher syndrome and deafblind use sign language and spoken language with CI. It's help them understand and not frustrate.

CI with children and adult are best for sign language and spoken language. That's not good for children with CI without sign language.

I have no idea why FDA didn't show the success rate. I will ask ENT clinician next week. My third mapping appointment is next Tuesday.

 

[RonJaxon]

This issue cannot be viewed as a "Deaf issue" or a "deaf culture" issue. Because to them it has nothing to do with deaf culture. Many don't even know deaf culture exists and why should they if they are not a part of that culture.

What many parents are thinking is, "My child has a problem and I'm looking for a solution".

If my child can't walk and there's something that will fix their legs. They'll get their legs fixed. If their child can't hear and there's a process to give them hearing. Then they'll give them the ability to hear.

It really is that simple.

 

[Pinky]

This issue cannot be viewed as a "Deaf issue" or a "deaf culture" issue. Because to them it has nothing to do with deaf culture. Many don't even know deaf culture exists and why should they if they are not a part of that culture.

What many parents are thinking is, "My child has a problem and I'm looking for a solution".

If my child can't walk and there's something that will fix their legs. They'll get their legs fixed. If their child can't hear and there's a process to give them hearing. Then they'll give them the ability to hear.

It really is that simple.

I agree with you. That's same as blind people who cant see as well. They can get fix to see. The people got into bad auto accident cause damage the face. They need the plastic implant surgery on face to cover the scar. The children got bite by dog on children's face and ears tore. It need to fix. Is that make sense?

Few deaf members don't understand how is CI's success. Maybe FDA do not want to show to deaf people with against CI and not want to hear how is success. It's my guess. I can ask to ENT anyways.

 

[CJB]

For me, I have usher syndrome. I can't see in dark. It startles me many times. It was frustrate! I can't hear the car in background with HA. The hearing aids doesn't help me at all!

The children with retinitis pigmentosa with hearing loss in rare genetic disorder can get CI. It's common to usher syndrome and deafblind use sign language and spoken language with CI. It's help them understand and not frustrate.

CI with children and adult are best for sign language and spoken language. That's not good for children with CI without sign language.

Right now I am blind/HH so I could probably be compared more or less to a totally deafblind person with CI. I can hear in a quiet room and listen to one-on-one conversation but I'm lost in a noisy environment or when several people are speaking at once. If I became severely or profoundly deaf, I'd probably consider the CI, especially because my vision prognosis is that I will go totally blind. And right now my residual vision is pretty useless: I can only see some colors up close.

I think it's fine if someone wants to get the CI. Everyone knows what's right for them. What I have a hard time with is choosing for one's child. I know a child can't make the decision on their own, but I would discuss it with my child and ask them if they want to hear better or if they're happy being deaf with sign. Or if they want to give it some time. I know it's not an easy decision, but that's why for my child, I wouldn't want to just make it for him.

 

[CJB]

This issue cannot be viewed as a "Deaf issue" or a "deaf culture" issue. Because to them it has nothing to do with deaf culture. Many don't even know deaf culture exists and why should they if they are not a part of that culture.

What many parents are thinking is, "My child has a problem and I'm looking for a solution".

If my child can't walk and there's something that will fix their legs. They'll get their legs fixed. If their child can't hear and there's a process to give them hearing. Then they'll give them the ability to hear.

It really is that simple.

This is a really good point.

 

[Pinky]

Right now I am blind/HH so I could probably be compared more or less to a totally deafblind person with CI. I can hear in a quiet room and listen to one-on-one conversation but I'm lost in a noisy environment or when several people are speaking at once. If I became severely or profoundly deaf, I'd probably consider the CI, especially because my vision prognosis is that I will go totally blind. And right now my residual vision is pretty useless: I can only see some colors up close.

I think it's fine if someone wants to get the CI. Everyone knows what's right for them. What I have a hard time with is choosing for one's child. I know a child can't make the decision on their own, but I would discuss it with my child and ask them if they want to hear better or if they're happy being deaf with sign. Or if they want to give it some time. I know it's not an easy decision, but that's why for my child, I wouldn't want to just make it for him.

That's true! I felt isolate and boring in hearing family and friends when I can't hear or see in dark. If I have deaf child with usher syndrome. I can ask child to see it's interest to get CI like me. We can discuss together. The child can make decide for life what she or he want. I am still teach my child to learn ASL. Of course! I don't want my deaf child to be same me in the past. I had problem with education with deaf school. The teachers had reject me because I has usher syndrome. I had problem with read on text. I didn't make it at school. I can't understand the English in sound word. I am way to behind the English sound because I can't hear anything. I wasn't interesting to read the books when I was kid. I had problem with vision. I was very distract easily. It will give deaf child take their time to make decide.

I suppose to get CI when I was 6 years old. My parent wanted me to get one. I was afraid of hospital because I hate the hospital with surgery stuff. My dad concerned about my fear. He told my mom to wait until I get older to make decide. Now I am not afraid of CI surgery. It made me recovery as well. I am happy with CI. It changed my life!

 

[yizuman]

Why don't they have those stats? I don't wanna just hear a success rate, I wanna see ALSO a failure rate as well. A one sided stats isn't gonna fly.

Me thinks the FDA has something to hide.

Yiz

 

[CJB]

That's true! I felt isolate and boring in hearing family and friends when I can't hear or see in dark. If I have deaf child with usher syndrome. I can ask child to see it's interest to get CI like me. We can discuss together. The child can make decide for life what she or he want. I am still teach my child to learn ASL. Of course! I don't want my deaf child to be same me in the past. I had problem with education with deaf school. The teachers had reject me because I has usher syndrome. I had problem with read on text. I didn't make it at school. I can't understand the English in sound word. I am way to behind the English sound because I can't hear anything. I wasn't interesting to read the books when I was kid. I had problem with vision. I was very distract easily. It will give deaf child take their time to make decide.

I suppose to get CI when I was 6 years old. My parent wanted me to get one. I was afraid of hospital because I hate the hospital with surgery stuff. My dad concerned about my fear. He told my mom to wait until I get older to make decide. Now I am not afraid of CI surgery. It made me recovery as well. I am happy with CI. It changed my life!

That's really too bad you were rejected at the Deaf school.

It's hard to be deafblind sometimes cause many blind people reject you for being deaf and many deaf people reject you for being blind. So it's a no win situation in both communities. I can understand you cause I had lots of problems with reading as a child too since I was legally blind.

I feel very isolated in family events too because I can't hear or see anything that's going on and most people don't have the patience to tell me what's going on.

I'm glad your parents didn't force you to get the CI despite your fears. After all when you were ready you got it and it was successful. If you got it as a young child you might have hated it cause of the trauma surrounding the hospital. Sounds like it worked out for you in terms of the CI though.

 

[somedeafdudefromPNW]

Wow...

Ironically when I went to a Deaf school, at the Manitoba School for the Deaf, I was part of the "Deaf of Deaf" crowd, even though my family is entirely hearing and that I am blind. And those people are notorious for rejecting one-generation deafness and blind people.

I didn't face this social stigma of being a deafblind until much later in life when I was helping out the local Deaf community to become more computer-literature, then the limit of my sight loss became apparent to the local people, and thus some acted out because of it.

Go figures.