to cure or not to cure?

nicknrm said:
My opinion: Simple words-I AM NOT IN FAVOR OF THEM. I never have been and never will be. Cochlear Implants are way to "robotic" for me. I would never have dreamed that on my son. My wife had originally wanted it. We went and did everything necessary to see both sides (good and bad). In my opinion, the Bad outweighed the good. People woke up with paralysis (rare) or they just never adjusted so you had the surgery done for nothing. Many people used them for a few years and they got old, so they stopped the use! A student I worked with, at a local school (I interpret for the school district), has attempted 3 Cochlear Implants. One while he was 1 1/2 years old, one when he was 5, and one while he was 14. None of these have been successful. He has given up and he has always been fluent in American Sign Language. When he tried the Implant, the parents did everything possible to help...but it still didn't help.

What's wrong with being profoundly, permanently deaf? Have a Cochlear Implant is NOT the best of both worlds, like some claim. Generally, your doctor who does the procedure is extremely against Deaf Culture, the language, and the rituals. Therefore they ask for total verbal communication. I compare Cochlear Implants to oralism.

I'm sorry if this is opinionated. Didn't intend to be that much opinionated.
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I personally think Cochlear Implant is one of the greatest thing that has happened to the Deaf Culture and Oralism Culture. I'm 22 years old and I had CI since age of four, it's implanted on my left ear. It's the greatest thing ever happened to me and I love hearing through CI. Sure there are risks but their rare, meaning they rarely happen. I only have two friends out of 10 friends with CI that only had problems with it. Sure, CI may not be for everyone but it doesn't mean that everyone has a problem with CI.

I do know this, if my son is Deaf, I would give him CI because I want him to have same opportunity that I had, to grow up in both world, hearing and deaf world. However my husband, who's hearing, is against it because he doesn't like the idea of having surgery so close to the brain and he said there's always a chance for something to go drastically wrong.

Anyways, I just wanted to say Nicknrm, everyone have their own opinion but CI isn't bad for everyone, sure everyone have their own experences and there may be some people out there that can never get hold of the CI, but it can work....look at me, I'm 22 years old and I have been 'Hearing' through CI for 18 years of my life without any problem.

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cdmeggers:

I understand what you're going through. When I was 16/17 years old, My dad and stepmom wanted me to get another CI for my right ear because they think it would be great, to give me more advantages of hearing. I flat out told them no because I didn't want to look "odd" to have two CI instead of one. But nevertheless, they dragged me to the doctors to get me xrayed and everything and thankfully, they have asked me once again, do I want to get CI for my right hear and my answer has always been the same, "No" so they have dropped it. But every once in a while, they would bring it up to see if I would change my mind. All they want is to give me the best of everything.

I told Dad that I want to leave my right ear alone so there's a possibility chance of getting my ear fixed with cell regeneration but then again, I've been waiting for this most of my life and nothing is happening about it. BC if you get CI, you can never fix your hair cells as CI would have destroyed it completely. I'm afraid that if they were able to do it, what if they can't fix mine...all my hair cells are broken, been like that since or before I was born.

So now after couple of years thinking...I'm thinking about getting another CI for my right ear since I've been hearing from so many friends of mine that been getting another CI and they think it's amazing, that they can hear more than they heard with one CI. I've been hearing positive feedbacks about having two CI....but I can't help it but think that one CI works just fine but then again, I've noticed that I've been asking friends/Family to repeat what they have said and I'm not hearing as good as I thought I was before.

So now....I'm thinking about getting another CI but I'm afraid to tell my husband and my parents....my husband surely would have negative feedback about it while my parents would have positive feedback with saying I told you so!
 
I do think a CI will make enough of a difference for me.
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deafdude, CD is unresponsive in one ear. I do understand your stance....I kinda think that there is some unscruploous marketing going out there in regards to CIs. (sort of like the relationship some docs have with Big Pharma)
That said, it does seem like many if not most canidates for CIs come to it after a long journey of trying out the alternatives.


So now after couple of years thinking...I'm thinking about getting another CI for my right ear since I've been hearing from so many friends of mine that been getting another CI and they think it's amazing, that they can hear more than they heard with one CI. I've been hearing positive feedbacks about having two CI....but I can't help it but think that one CI works just fine but then again, I've noticed that I've been asking friends/Family to repeat what they have said and I'm not hearing as good as I thought I was before.
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Just a word of advice......I think bilateral CI is good, but unless your audiogram is totally flat, I'd see about maybe trying out some high power/digital aids first. You might be able to hear some with bimodal....I know a girl who was so deaf that she wore a body worn aid back in the 80's, and she couldn't even hear enviromental sounds. Fast forward to the '00's, and she tried a new digital HA and was even getting some speech perception!
 
Hear Again, I read from your previous posts you are deaf and blind. Were you born blind? You also mentioned before your hearing loss was mild and gradually got worse. What aids do you use to communicate on the internet? What do you still see, can you make out any shapes or colors? Can you count fingers or see hand motions?

If two people with identical audiograms don't hear the same, how can we guarantee they will hear the same or better with CIs? I remember when I was a little boy and CI technology was new, only people who were totally, completely deaf could qualify for a CI, the rest wore high power HAs and made do with whatever environmental sounds they could (barely) hear.

As for db hearing loss, I do know I hear well with my HAs at 500Hz and below where my db loss is 90db at 500Hz. Ill have to get tested and find out what my aided score is, but im guessing it could be 20db at 500Hz. I was told the reason I can't clearly understand speech is my HL is 110+ db at 1000Hz and higher. I never clearly understood speech since I was born with a 100+ db loss at 1000Hz and up. My HF hearing has since gotten even worse gradually, but it was always very poor to begin with. But wouldn't those with a HL below 100db have enough hearing to understand more than 50% of speech and also have aided scores equal or better than what CI gives?

cdmeggers, would you be able to get bilaterial CIs in a cheaper center?
As for how well different people hear with hearing aids, does it have to do with aided hearing score? Didn't the new Naidas make everything so much louder and improve your aided score to the 20-30db range?

You said: "I don't think messing with gains and thresholds and bass levels will do much for me."

Is everything not loud enough for you? I can say that when I upgraded to newer HAs over the years, each upgrade made sounds louder and perhaps a little more clear. Even if my speech perception didn't improve much, I could hear so much more environment sounds and I could pick up faint sounds as well.

You also said: "There's still plenty more room for gains on the Supero right now" I would suggest you tell your audie to max out the gains for every frequency(if it gets too loud, just adjust the volume button/dial on your HA) and practice listening to speech and faint environmental sounds. My own audie told me itll take a few months of training. I did hear an immediate difference in loudness but training will let my brain get used to all the new sounds im hearing. CIs are a last restort and if you have plenty more room in your HAs, definately push your HAs to their full potential.
 
Dude, just let me continue on with the CI option, and quit trying to talk me out of it. I don't really appreciate all the stuff you've said. Everyone hears differently with hearing aids, it doesn't matter what hearing aid, what gain/volume, how much bass they have, what their audiograms are like. Each and every person is going to respond to the hearing aid programmings in their own ways, it's not going to be the same for everyone.
Don't come in here and tell me "just up the gain!" because the current gain/volume on my Supero is fine. If I have it turned up any more, everything will be just too loud. CI's may be a last resort for YOU. But this MY decision, so please, just let me continue on and quit trying to interfere thanks. It's my life, and I feel the implant will make a difference for me, so be it and leave it at that.
 
cdmeggers said:
Dude, just let me continue on with the CI option, and quit trying to talk me out of it. I don't really appreciate all the stuff you've said. Everyone hears differently with hearing aids, it doesn't matter what hearing aid, what gain/volume, how much bass they have, what their audiograms are like. Each and every person is going to respond to the hearing aid programmings in their own ways, it's not going to be the same for everyone.
Don't come in here and tell me "just up the gain!" because the current gain/volume on my Supero is fine. If I have it turned up any more, everything will be just too loud. CI's may be a last resort for YOU. But this MY decision, so please, just let me continue on and quit trying to interfere thanks. It's my life, and I feel the implant will make a difference for me, so be it and leave it at that.
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:gpost:
 
Yes good posting CD! deafdude,
I'm a hardcore advocate of experimenting with HA before opting for CI, but I think that CD has made the right choice abt opting for CI. You have to remember that she's pretty much stone deaf in her unaided ear.....that plus her speech comprehension with her aided ear has gone down.
That is the PERFECT sitution in which a person should opt for implantation.
And I think b/c CD still has some speech comprehension in her aided ear, she'd most likely go bimodal, instead of bilateral.
 
deafdude1 said:
Hear Again, I read from your previous posts you are deaf and blind. Were you born blind? You also mentioned before your hearing loss was mild and gradually got worse. What aids do you use to communicate on the internet? What do you still see, can you make out any shapes or colors? Can you count fingers or see hand motions?

If two people with identical audiograms don't hear the same, how can we guarantee they will hear the same or better with CIs? I remember when I was a little boy and CI technology was new, only people who were totally, completely deaf could qualify for a CI, the rest wore high power HAs and made do with whatever environmental sounds they could (barely) hear.

As for db hearing loss, I do know I hear well with my HAs at 500Hz and below where my db loss is 90db at 500Hz. Ill have to get tested and find out what my aided score is, but im guessing it could be 20db at 500Hz. I was told the reason I can't clearly understand speech is my HL is 110+ db at 1000Hz and higher. I never clearly understood speech since I was born with a 100+ db loss at 1000Hz and up. My HF hearing has since gotten even worse gradually, but it was always very poor to begin with. But wouldn't those with a HL below 100db have enough hearing to understand more than 50% of speech and also have aided scores equal or better than what CI gives?
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I was born totally blind, so I've never been able to see. I use a screen reader called Window-Eyes and a Braille display (Braille Star 40). The screen reader sends information that appears on the computer screen to the Braille display where it is read by me. It can also read the same information in synthetic speech.

As to your second point, it's difficult (and unfair) to make a blanket statement about what any of us should expect from our aids. Hearing loss is as wide and varied as the colors of a rainbow -- no 2 people hear exactly the same. Just because one person is able to benefit from hearing aids with a 90+ dB loss doesn't mean the next person can. If that were the case, there wouldn't be such a thing as CIs. Aside from that, research has proven time and time again how much benefit people with greater amounts of residual hearing (i.e. severe-profound) receive from CIs, so it only makes sense that if they can acheive greater speech understanding from an implant, they opt for a CI instead.
 
cdmeggers said:
Dude, just let me continue on with the CI option, and quit trying to talk me out of it. I don't really appreciate all the stuff you've said. Everyone hears differently with hearing aids, it doesn't matter what hearing aid, what gain/volume, how much bass they have, what their audiograms are like. Each and every person is going to respond to the hearing aid programmings in their own ways, it's not going to be the same for everyone.
Don't come in here and tell me "just up the gain!" because the current gain/volume on my Supero is fine. If I have it turned up any more, everything will be just too loud. CI's may be a last resort for YOU. But this MY decision, so please, just let me continue on and quit trying to interfere thanks. It's my life, and I feel the implant will make a difference for me, so be it and leave it at that.
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I read your blog and a few other posts and you are indeed serious about CI. I was only trying to help and didn't mean to offend you or anyone. I know each person is different but there are guidelines such as 90+ db hearing loss and understanding less than 40% of speech comphrension(you score 45%). Question: when the gain was maxed, did it improve speech or simply make environmental sounds too loud? If you are still a candidate, I really wish you luck and hope you are happy with your CI, that it is better than any HA and that you can live with losing the rest of your natural hearing. I won't explain any further because you have done your research and hopefully exhausted every possible option with HA. Let me just thank you for your time and replies. I am learning myself.

deafdyke said:
Yes good posting CD! deafdude,
I'm a hardcore advocate of experimenting with HA before opting for CI, but I think that CD has made the right choice abt opting for CI. You have to remember that she's pretty much stone deaf in her unaided ear.....that plus her speech comprehension with her aided ear has gone down.
That is the PERFECT sitution in which a person should opt for implantation.
And I think b/c CD still has some speech comprehension in her aided ear, she'd most likely go bimodal, instead of bilateral.
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She does have a total loss in her left ear but her right ear has plenty of residual hearing from 250Hz to 6KHz so she isn't missing the high frequencies like I and many others with much worse hearing than she. Every case study ive read about CI, the subjects had much worse hearing than she does. This is why I am so puzzled, I never knew someone could be a candidate with the amount of residual hearing she has. :hmm: I even know someone who had 85db loss at 250Hz, over 90db at 500Hz and no hearing in the high frequencies(above 2000Hz) that was rejected because her HL was less than 90db in at least one of the frequencies. They didn't even care about her very low speech comphrension and told her that CI would not help with speech comphrension and help very little with environmental sounds. I also remember over 10 years ago only those who were stone deaf(no audiogram, no residual hearing) were eligable as CI candidates. So much has changed!

I had suggested the audie max out the gains on her HA and she says its too loud. Ive read that some people turn the volume down on their CI as they also say it's too loud. Is CI *only* for improving speech or is it supposed to improve awareness/perception of environmental sounds, especially faint sounds? So many questions, so much I need to learn!

Hear Again,

Interesting how far technology has gone to help the blind. I do have a question, how does your programs and braille describe pictures and even colors? Are you able to see light perception or is everything always pitch black(called NLP)

When I was younger, I was told CI was reserved for those totally deaf with no residual hearing. I guess the requirements are drastically lower today than several years ago. I did post a thread with several questions on CI and thank you for the answers. Ive also been reading case studies but so far all the case studies are subjects with hearing as profound as you.(one subject heard nothing above 500Hz in the worse ear and got a CI in that ear. The better ear was still severe-profound but didn't qualify.) I did read a few expermental cases where subjects had significent low frequency hearing but none in high frequency. They were in clinical trials for a hybrid CI/HA design.

Hybrid Cochlear Implants
 
deafdude,

I can't tell you what I see because I don't know what colors look like. I have no idea what "black" is except that it's a color. I don't have light perception (LP), so I'm considered NLP and have been since birth.

Depending on the website I'm reading, my screen reader will announce graphical information is there are alt tags included. If there are not, all it will announce is "graphic" followed by a random number that has no significance. My Braille display shows the same information by showing a window that reads, "graphic 2" (or whatever number it happens to be).
 
deafdude,

I should mention that it's possible I was deemed a CI candidate not only based on my speech discrimination percentages, but also the fact that I'm totally blind. I was the first deafblind person to receive a CI at my implant center.
 
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