Another CI failure story. No improvement in speech!

#41
I am not going to argue with any of you. I did warn you that if you are biased, this thread would make you mad. I just wanted to provide perspective that CI is excellent for some(well, most) but a disaster for some as well. Let's put our pro-ci bias aside and see both sides of the fence. You congratulate those with excellent results and dismiss those with bad results. Shel has been trying to speak of her own observations of CI results and you don't take her seriously. You only accept the positive results.

*snip*

Read the rest of the thread, there's alot of good points being made. Feel free to discuss them here and ask questions. Keep an open mind and see both sides.
Deafdude,

You are pulling up old information from 2+ years ago threads. Have you considered that some of those members may have changed their perspectives towards CIs?

Please refrain from pulling up archived threads because some of those members no longer post here or do no wish to be involved in debates that you have inadvertently involved them in because you wish to prove us wrong. You are not doing them a favour by involving them in your self-serving crusade.
 

GrendelQ

41°17′00″N 70°04′58″W
Premium Member
#42
Deafdude, I think I only scored 50% comprehension in trying to read your last quilt of a post, with all of the embedded quotes stitched together, it's almost schizophrenic in its cacophony of voices. But if I had to distill it, I'd say your point is that you think we who have CIs, have kids w/CIs, or who are considering CIs don't want to hear objective accounts from those who have had positive and negative experiences. I strongly disagree. If that were the case, we'd only read the first couple of pages of the brochures from CI companies. We wouldn't talk with surgeons, ENTs, audiologists, schools, speech therapists, those who've received CIs, their families, we wouldn't research scientific papers, review studies.

I do want to hear the reality -- warts and all: FROM THOSE WHO HAVE EXPERIENCED CIs. That's why I've joined endless groups of CI recipients where people point to real data sources and tell their own stories. You relentlessly proclaim that you are providing info, and when it comes to your HAs and how they affect you, I believe you and I care. But you don't know what you are talking about when it comes to CIs and your clips from who knows where are not useful, they are just noise. If you want to get the straight scoop in terms of real life experience with a CI -- good and bad -- ask the many, many CI recipients on this board, ask Faire Jour or me what it's like for a child.

What on earth makes you think that you have insight that trumps what we are experiencing in real life? These are our children being implanted, our spouses, ourselves. Do you think we're not researching the hell out of the possibilities, the probabilities, the outcomes and risks given what's at stake?

If something goes wrong with my daughter's CI, or I'm disappointed in the results, don't you think I'm going to be the biggest critic, the loudest advocate for improvement? I'll shout it from the rooftops: The CI is a pain in the bum: we have to maintain a lot of equipment, deal with insurance and upgrades, processor failures. We've gone through 6 processors, at least, in 2 years. Would you give an expensive iPhone to a 3 year old to carry around and play with all day? Now multiple the cost of that iPhone by 700, and then fish it out of the bath, the pool, the washing machine. Try making that processor stay in place while downhill skiiing in frigid weather, or see how fast you can get it off her head as she's about to leap out of the kayak. If somebodytouches her processor and gives her a static electric shock: poof, her map is gone and we have to visit the clinic for a new program. Want to know how I feel when she is doing music lessons, her setting is on high sensitivity so she detects pitch accurately and the dog walks in and barks loudly, bringing her to tears? When my child cries because she hears too much, too painfully, that's very bad. I'll tell all, I'm not hiding anything, and I don't gain a thing if someone else goes off and gets a CI. If anything, I don't want ANYONE to get a CI without knowing the good and the bad, because I never want to read that someone thought that with a CI in place a magic button would be pressed, he or she would have full hearing restored, all wishes granted, world peace, and shiny bouncy hair, to boot.

But I'll also tell you honestly that it's an absolutely amazing tool that has provided Li-Li with music, with song and the ability to talk with her grandparents on the phone, and if you heard her joyfully chattering away with her cousins, singing in the backseat of the car, playing piano, or reciting her alphabet and days of the week in school for 5 minutes you'd see why these annoyances and downsides are meaningless to us.
 

Lissa

Active Member
Premium Member
#43
Deafdude, I think I only scored 50% comprehension in trying to read your last quilt of a post, with all of the embedded quotes stitched together, it's almost schizophrenic in its cacophony of voices. But if I had to distill it, I'd say your point is that you think we who have CIs, have kids w/CIs, or who are considering CIs don't want to hear objective accounts from those who have had positive and negative experiences. I strongly disagree. If that were the case, we'd only read the first couple of pages of the brochures from CI companies. We wouldn't talk with surgeons, ENTs, audiologists, schools, speech therapists, those who've received CIs, their families, we wouldn't research scientific papers, review studies.

I do want to hear the reality -- warts and all: FROM THOSE WHO HAVE EXPERIENCED CIs. That's why I've joined endless groups of CI recipients where people point to real data sources and tell their own stories. You relentlessly proclaim that you are providing info, and when it comes to your HAs and how they affect you, I believe you and I care. But you don't know what you are talking about when it comes to CIs and your clips from who knows where are not useful, they are just noise. If you want to get the straight scoop in terms of real life experience with a CI -- good and bad -- ask the many, many CI recipients on this board, ask Faire Jour or me what it's like for a child.

What on earth makes you think that you have insight that trumps what we are experiencing in real life? These are our children being implanted, our spouses, ourselves. Do you think we're not researching the hell out of the possibilities, the probabilities, the outcomes and risks given what's at stake?

If something goes wrong with my daughter's CI, or I'm disappointed in the results, don't you think I'm going to be the biggest critic, the loudest advocate for improvement? I'll shout it from the rooftops: The CI is a pain in the bum: we have to maintain a lot of equipment, deal with insurance and upgrades, processor failures. We've gone through 6 processors, at least, in 2 years. Would you give an expensive iPhone to a 3 year old to carry around and play with all day? Now multiple the cost of that iPhone by 700, and then fish it out of the bath, the pool, the washing machine. Try making that processor stay in place while downhill skiiing in frigid weather, or see how fast you can get it off her head as she's about to leap out of the kayak. If somebodytouches her processor and gives her a static electric shock: poof, her map is gone and we have to visit the clinic for a new program. Want to know how I feel when she is doing music lessons, her setting is on high sensitivity so she detects pitch accurately and the dog walks in and barks loudly, bringing her to tears? When my child cries because she hears too much, too painfully, that's very bad. I'll tell all, I'm not hiding anything, and I don't gain a thing if someone else goes off and gets a CI. If anything, I don't want ANYONE to get a CI without knowing the good and the bad, because I never want to read that someone thought that with a CI in place a magic button would be pressed, he or she would have full hearing restored, all wishes granted, world peace, and shiny bouncy hair, to boot.

But I'll also tell you honestly that it's an absolutely amazing tool that has provided Li-Li with music, with song and the ability to talk with her grandparents on the phone, and if you heard her joyfully chattering away with her cousins, singing in the backseat of the car, playing piano, or reciting her alphabet and days of the week in school for 5 minutes you'd see why these annoyances and downsides are meaningless to us.
:gpost:
 

Pinky

New Member
#44
Deafdude, I think I only scored 50% comprehension in trying to read your last quilt of a post, with all of the embedded quotes stitched together, it's almost schizophrenic in its cacophony of voices. But if I had to distill it, I'd say your point is that you think we who have CIs, have kids w/CIs, or who are considering CIs don't want to hear objective accounts from those who have had positive and negative experiences. I strongly disagree. If that were the case, we'd only read the first couple of pages of the brochures from CI companies. We wouldn't talk with surgeons, ENTs, audiologists, schools, speech therapists, those who've received CIs, their families, we wouldn't research scientific papers, review studies.

I do want to hear the reality -- warts and all: FROM THOSE WHO HAVE EXPERIENCED CIs. That's why I've joined endless groups of CI recipients where people point to real data sources and tell their own stories. You relentlessly proclaim that you are providing info, and when it comes to your HAs and how they affect you, I believe you and I care. But you don't know what you are talking about when it comes to CIs and your clips from who knows where are not useful, they are just noise. If you want to get the straight scoop in terms of real life experience with a CI -- good and bad -- ask the many, many CI recipients on this board, ask Faire Jour or me what it's like for a child.

What on earth makes you think that you have insight that trumps what we are experiencing in real life? These are our children being implanted, our spouses, ourselves. Do you think we're not researching the hell out of the possibilities, the probabilities, the outcomes and risks given what's at stake?

If something goes wrong with my daughter's CI, or I'm disappointed in the results, don't you think I'm going to be the biggest critic, the loudest advocate for improvement? I'll shout it from the rooftops: The CI is a pain in the bum: we have to maintain a lot of equipment, deal with insurance and upgrades, processor failures. We've gone through 6 processors, at least, in 2 years. Would you give an expensive iPhone to a 3 year old to carry around and play with all day? Now multiple the cost of that iPhone by 700, and then fish it out of the bath, the pool, the washing machine. Try making that processor stay in place while downhill skiiing in frigid weather, or see how fast you can get it off her head as she's about to leap out of the kayak. If somebodytouches her processor and gives her a static electric shock: poof, her map is gone and we have to visit the clinic for a new program. Want to know how I feel when she is doing music lessons, her setting is on high sensitivity so she detects pitch accurately and the dog walks in and barks loudly, bringing her to tears? When my child cries because she hears too much, too painfully, that's very bad. I'll tell all, I'm not hiding anything, and I don't gain a thing if someone else goes off and gets a CI. If anything, I don't want ANYONE to get a CI without knowing the good and the bad, because I never want to read that someone thought that with a CI in place a magic button would be pressed, he or she would have full hearing restored, all wishes granted, world peace, and shiny bouncy hair, to boot.

But I'll also tell you honestly that it's an absolutely amazing tool that has provided Li-Li with music, with song and the ability to talk with her grandparents on the phone, and if you heard her joyfully chattering away with her cousins, singing in the backseat of the car, playing piano, or reciting her alphabet and days of the week in school for 5 minutes you'd see why these annoyances and downsides are meaningless to us.
:gpost::gpost::gpost: I love this post. You are good point! I agree with you. :thumb:
 
R

rockdrummer

Guest
#45
...................................Last week, my new white cane broke when hubby accidentally stepped on it, the bottom part of the white cane snapped. ..............................................
Be honest bucket. You whacked your hubby over the head with it when he got out of line and that is really how it broke... eh? :naughty:
 
R

rockdrummer

Guest
#47
Deafdude, You keep implying that people are under the impression that a CI is 100% risk free and successful for everyone. Please show me just 1 single post where anyone has ever said or suggested that. Even though I have never seen anyone suggest this it seems to be the basis for your argument and from where I stand it looks like you conjured it up in your own mind.
 
R

rockdrummer

Guest
#48
Deafdude,

You are pulling up old information from 2+ years ago threads. Have you considered that some of those members may have changed their perspectives towards CIs?

Please refrain from pulling up archived threads because some of those members no longer post here or do no wish to be involved in debates that you have inadvertently involved them in because you wish to prove us wrong. You are not doing them a favour by involving them in your self-serving crusade.
:gpost: Not to mention there are advances in the technology over time as things get better. Any reasonable person still knows there are never any guarantees. Even the doctors have to inform you of that prior to surgery and you have to sign a consent form which also indicates that.
 
#49
Be honest bucket. You whacked your hubby over the head with it when he got out of line and that is really how it broke... eh? :naughty:
I wish I could be much more explicit but you know.... :giggle:

:) Very funny -- Such a great analogy!
It comes with the territory, LOL!

I have to admit I was so pissed off when the cane broke as it was my favourite kind, the telescopic kind from the NFB.
 
#50
Deafdude, You keep implying that people are under the impression that a CI is 100% risk free and successful for everyone. Please show me just 1 single post where anyone has ever said or suggested that. Even though I have never seen anyone suggest this it seems to be the basis for your argument and from where I stand it looks like you conjured it up in your own mind.
Good points and at the risk of "piling on" I too do not see where posters on this forum are making such claims. If anything, I think the posters who either have ci themselves or their children do, have pretty much stated that there are no guarantees and that individual results vary.
 

deafdyke

Well-Known Member
#51
.
In matters like this when it comes to a "device". They are not particularly "Device" failures. They are individual results and it's widely known in this case that the CI will bring better results for some then others.
YES!!! Just like with hearing aids.......some implantees are "almost hearing" others only have some speech/enviromental sound awareness and everything and anything in between! Just like the end results with hearing aids!
You know.........I don't think deafdude is saying that it's a device failure issue........rather he's saying that the CI is promoted as " Oh it overcomes ALL the disadvantages of hearing aids!"
They are no longer promoted as " this is great for severe-profound loss where there's little to no help from HAs"
It's implied by the manufactor that they magically overcome all the disadvantages of being hoh.
 
#52
.
CI is promoted as " Oh it overcomes ALL the disadvantages of hearing aids!"
They are no longer promoted as " this is great for severe-profound loss where there's little to no help from HAs"
It's implied by the manufactor that they magically overcome all the disadvantages of being hoh.
yes and thats why if i lose all of my hearing (good odds) i will NOT get one
 
#53
.
YES!!! Just like with hearing aids.......some implantees are "almost hearing" others only have some speech/enviromental sound awareness and everything and anything in between! Just like the end results with hearing aids!
You know.........I don't think deafdude is saying that it's a device failure issue........rather he's saying that the CI is promoted as " Oh it overcomes ALL the disadvantages of hearing aids!"
They are no longer promoted as " this is great for severe-profound loss where there's little to no help from HAs"
It's implied by the manufactor that they magically overcome all the disadvantages of being hoh.
Interpret his posts however you wish, but his constant biased posting is annoying even to me. There are failures of the device, but I doubt that it's that common. There are also "individual mileage" as far as how effective the device is. But, I bet if you asked most CI users, they will say they are happy with it, whether they can understand speech or just hear environmental sounds. Deafdude really does need to give these threads a rest, or at least, be more balanced. He certainly isn't going to sway anybody either way since he is not a CI user and can't give a personal acct on it any better than I could.
 
#54
The CI is a pain in the bum: we have to maintain a lot of equipment, deal with insurance and upgrades, processor failures. We've gone through 6 processors, at least, in 2 years. Would you give an expensive iPhone to a 3 year old to carry around and play with all day? Now multiple the cost of that iPhone by 700, and then fish it out of the bath, the pool, the washing machine. Try making that processor stay in place while downhill skiiing in frigid weather, or see how fast you can get it off her head as she's about to leap out of the kayak. If somebodytouches her processor and gives her a static electric shock: poof, her map is gone and we have to visit the clinic for a new program. Want to know how I feel when she is doing music lessons, her setting is on high sensitivity so she detects pitch accurately and the dog walks in and barks loudly, bringing her to tears? When my child cries because she hears too much, too painfully, that's very bad.
But I'll also tell you honestly that it's an absolutely amazing tool that has provided Li-Li with music, with song and the ability to talk with her grandparents on the phone, and if you heard her joyfully chattering away with her cousins, singing in the backseat of the car, playing piano, or reciting her alphabet and days of the week in school for 5 minutes you'd see why these annoyances and downsides are meaningless to us.
:gpost::gpost::gpost: the remote (extra that is for the n5) should help with some of these problems

I no that people veiw remotes as a pain and they are i NEED them for my ha s cant use controls on the aids poor finger control

but when the processor/s needed to be turned off quickly a remote will mean it can happend from the side of the room.

Originally Posted by deafdyke
.
CI is promoted as " Oh it overcomes ALL the disadvantages of hearing aids!"
They are no longer promoted as " this is great for severe-profound loss where there's little to no help from HAs"
It's implied by the manufactor that they magically overcome all the disadvantages of being hoh.

yes and thats why if i lose all of my hearing (good odds) i will NOT get one
 

Lissa

Active Member
Premium Member
#55
No more then it would be to if you out your tongue on a battery. And the 2 or 3 batteries in a CI does not have enough power to do this with anything more then the sensation that static electricity could give.
No, she was really having shock like sensations, dizziness and painful headaches
 
#56
the thing is both the implant and processor will crap out in the end and implantees should been told this. a very bad ci team would have not said this.
 
#58
the thing is both the implant and processor will crap out in the end and implantees should been told this. a very bad ci team would have not said this.
Ummm, what utter nonsense is this? The implant itself is built to last one's lifetime. There may be some rare cases where an implant can fail but not many. It it did, then it can be replaced. There are people out there with older implants still going after 20+ years.

As for the processors, they age as anything else will like HAs and that is to be expected. Anybody expecting a CI processor to last 20 years is totally unrealistic. I would expect them to last maybe 10 years at best (there are always some that last longer of course). Therefore, I expect to have to replace them (processor) just like when I had HAs.
 
#59
Ummm, what utter nonsense is this? The implant itself is built to last one's lifetime. There may be some rare cases where an implant can fail but not many. It it did, then it can be replaced. There are people out there with older implants still going after 20+ years.

As for the processors, they age as anything else will like HAs and that is to be expected. Anybody expecting a CI processor to last 20 years is totally unrealistic. I would expect them to last maybe 10 years at best (there are always some that last longer of course). Therefore, I expect to have to replace them (processor) just like when I had HAs.
Most of the children who were my daughter's friends growing up were implanted around 88-92 and my daughter is the only one who needed to be reimplanted but we were aware that although the internal part is intended to last a lifetime, there was no guarantee that it would.
 

deafdyke

Well-Known Member
#60
but his constant biased posting is annoying even to me. There are failures of the device, but I doubt that it's that common. There are also "individual mileage" as far as how effective the device is. But, I bet if you asked most CI users, they will say they are happy with it, whether they can understand speech or just hear environmental sounds.
Very true. I think that the CI can be a godsend. That said I still find the marketing kind of sketchy. I think that deafdude IS bringing up a good point......but you're right, his posting on this subject is very biased!