We Need Current Info Before Writing Off Cochlear Implants

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Drew's Dad

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On this site I read a lot of stories of cochlear implants "not working" and "failing" advanced by those who don't favor CI's. If devices are failing, or people are failing in having success with properly functioning CI's, then that's good information to know. It helps us all make informed decisions.

However, with these "statistics" and "failures" of cochlear implants that are seen here (or anywhere), it would be really valuable to know at least a couple facts about the pool of persons who were evaluated. Otherwise, the story of a "failure" has no context, and is essentially worthless.

Information the reader must have to evaluate the importance of a "failure" or "success":

1) At what age was the person implanted? Children implanted at age 9 should not be compared with children implanted at 9 months because by age 9 the neural pathways have likely atrophied and the use of those pathways has likely been permanently damaged. The gap widens as the person grows into adulthood before being implanted.

2) What year was the child implanted? 1998 is a far cry from 2007 as far as the technology of the internal electrode array goes.

3) Single or Bilateral implant? Sound localization and hearing in noisy atmospheres such as classrooms is significantly better with bilateral.

4) How aggressive of an educational path was taken? If hearing loss was detected at birth (or early on), was the child enrolled in therapy or schooling before pre-school age to "get a jump on" the speech and educational learning process?

5) What was the educational support? Were parents committed in therapy, or did they let the surgeon do his/her thing and go back to watching tv and ignoring their child?

The factors can go on and on, but with the relatively recent improvement in implant technology, hearing screening identifying hearing loss early, the availability of bilateral implants, and lowering of the implant age in children, I don't believe there is a single relevant study group sample yet from which to evaluate the current status of the benefits and/or drawbacks of cochlear implants.

New parents reading this site and others may be reading horror stories of children falling behind in mainstream educational settings, but these horror stories almost never mention any of the factors above.

I feel that a child implanted at age nine, eight years ago with a single implant will not even be in the same planet as far as "hearing" potential as a child bilaterally implanted at nine months who is enrolled by supportive parent(s) in therapy immediately.

If you have a success story or a failure to describe, please let us know as much information as possible. I think it will help us all understand what is happening out there in regard to cochlear implants and our children or friends.
 
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Drew's Dad,

Those are all very valid and important points. I think number 5 plays a very important role in so called "ci failures". I also think another consideration is the length of time between the onset of deafness and implantation. The studies I have read consistently come to the same conclusion that the closer in time implantation is to the onset of deafness the increased liklihood that the person will be able to understand sounds with the ci. Also, with meninngitis that is extremely important due to ossification concerns.
Rick
 
My daughter was diagnosed profoundly deaf with EVA at the age of 1. She did not have a hearing test done at birth so we don't know if it was a progressive loss or if she was deaf at birth. Usually EVA is a progressive loss so the child could of had hearing at birth, but we'll never know in my case. She was implanted at the age of 2 in 2003. She's had the CI for 4 years now and so far it has been a successful journey. She is mainstreamed in kindergarden and doing very well. Her success is due to all the hard work we've put in on making the CI work. It's not a cure but it is a great tool to have if you commit yourself on making it work. I do question some of the "failures" in cases that it is'nt due to equipment failure. It's a full time commitment especially in the begginning and if you slack off and do nothing then it will result in failure. Age is another big issue to, being implanted at 2 or nowadays even earlier definately has more advantages than being implanted at an older age. The child grows up being used to sound and all the therapy they go through at a young age helps make things easier for them as they get older. In my daughters case, working with her now is so much easier . She picks up so fast on everything. Before it was all about repitition but now she picks up just talking about something. I know that is due to early implantation and hard work.
 
Drew's Dad said:
On this site I read a lot of stories of cochlear implants "not working" and "failing" advanced by those who don't favor CI's. If devices are failing, or people are failing in having success with properly functioning CI's, then that's good information to know. It helps us all make informed decisions.

However, with these "statistics" and "failures" of cochlear implants that are seen here (or anywhere), it would be really valuable to know at least a couple facts about the pool of persons who were evaluated. Otherwise, the story of a "failure" has no context, and is essentially worthless.

Information the reader must have to evaluate the importance of a "failure" or "success":

1) At what age was the person implanted? Children implanted at age 9 should not be compared with children implanted at 9 months because by age 9 the neural pathways have likely atrophied and the use of those pathways has likely been permanently damaged. The gap widens as the person grows into adulthood before being implanted.

2) What year was the child implanted? 1998 is a far cry from 2007 as far as the technology of the internal electrode array goes.

3) Single or Bilateral implant? Sound localization and hearing in noisy atmospheres such as classrooms is significantly better with bilateral.

4) How aggressive of an educational path was taken? If hearing loss was detected at birth (or early on), was the child enrolled in therapy or schooling before pre-school age to "get a jump on" the speech and educational learning process?

5) What was the educational support? Were parents committed in therapy, or did they let the surgeon do his/her thing and go back to watching tv and ignoring their child?

The factors can go on and on, but with the relatively recent improvement in implant technology, hearing screening identifying hearing loss early, the availability of bilateral implants, and lowering of the implant age in children, I don't believe there is a single relevant study group sample yet from which to evaluate the current status of the benefits and/or drawbacks of cochlear implants.

New parents reading this site and others may be reading horror stories of children falling behind in mainstream educational settings, but these horror stories almost never mention any of the factors above.

I feel that a child implanted at age nine, eight years ago with a single implant will not even be in the same planet as far as "hearing" potential as a child bilaterally implanted at nine months who is enrolled by supportive parent(s) in therapy immediately.

If you have a success story or a failure to describe, please let us know as much information as possible. I think it will help us all understand what is happening out there in regard to cochlear implants and our children or friends.
Click to expand...

+10
 
Drew's Dad, I talked w/ my Audi about the CI failures, and she said that at their hospital, they require a 3-4 wks wait before activations because they've been hearing from other Dr's/Audi's how patients that gets turned on at anywhere from days after surgery to 2 wks after surgery, their CI devices sometimes fail & stuff. Other reasons is that the CI user who 'failed' is because they didn't really do follow ups & continue practicing hearing, or don't come from a supportive family, so they just tend to give up easily. :/ That's why they believe it's best when a patient's family is fully supportive and willing to help the CI patient w/ the whole learning process. In which I'm so happy that my whole family, including my husband's family are all behind me in this & they all can't wait!
Oh and the list you provided? They're all true. :]
 
Drew's Dad said:
..............
New parents reading this site and others may be reading horror stories of children falling behind in mainstream educational settings, but these horror stories almost never mention any of the factors above.

I feel that a child implanted at age nine, eight years ago with a single implant will not even be in the same planet as far as "hearing" potential as a child bilaterally implanted at nine months who is enrolled by supportive parent(s) in therapy immediately.

If you have a success story or a failure to describe, please let us know as much information as possible. I think it will help us all understand what is happening out there in regard to cochlear implants and our children or friends.
Click to expand...
Excellent thread... and I hope parents that are looking for information will find it.

You are absolutely right.


In order to "show" the change in technology between 1998 and 2007; just go back to your 1998 computer.... and see how that has changed.... Would you be able to use it now??
And then realize that CI is a lot to do with computer -power... Systems from 1998 can be upgraded to 2007 software, but obviously will still work with 1998 processors and other hardware...

But that's only the beginning, perhaps 5% of the CI-system. (And that part hardly ever fails...)
The rest is parents, teachers, motivation, support, etc. etc... If they are not geared to make it work.... results will show.
 
The only thing I can suggest to parents who r considering CIs is to expose both languages to the children and respect deaf people's opinions or suggestions if they seek information from the deaf community. I don't think it is necessary to wipe CIs off completely but just understand the issues that the children may face growing up.

I wish I had the answers to why those children with cis that got referred to ouir school due to falling behind. I do know of 1 case in which the child fell so far behind was due to the public school feeling that the child didn't need deaf ed service due to having the misconception that the child can percieve spoken language without visual cues. The parents said the specialist kept telling them to give the child time but that time never came.

If the publics schools tell the parents their children don't need services, don't trust that immediately and take their word for it right away. Do some research and check to see if your child is really fully involved with the lectures or discussions instead of just sitting there and acting like they know what everyone is saying. Make sure the teachers call on them to check for understanding of the lesson.

As for the other vairables..I don't have the time here at work to ask about each of the students with CI's background. We have about 40 students here with CIs out of the whole school. Some have full use of their CIs and switch back and forth between both languages and I think it is great! Then we have those who came from the public schools who didn't benefit from their CIs and their only methods of communicating is through ASL or written English.
 
It is true that the parents are a huge part of implant success. That was a large part of the evaluation process at the Children's Hospital of Philadelphia (where Isaac was implanted). My husband and I had to go through an evaluation of our own to determine if we were going to work with Isaac after implantation. In the area we are from, there are few implanted children. In fact, of the one we know about, her parents didn't follow through with mappings and just basically put the implant on her head and let her go. She is 5 now and you would never know she was implanted. We already see huge improvement with Isaac and he has only been hearing since October 2006 and he is not bi-lateral. He follows verbal instructions and has a verbal vocabulary of about 30 words (they are rough pronounciations but you can tell what Isaac is trying to say).
 
shel90 said:
The only thing I can suggest to parents who r considering CIs is to expose both languages to the children and respect deaf people's opinions or suggestions if they seek information from the deaf community. I don't think it is necessary to wipe CIs off completely but just understand the issues that the children may face growing up.

I wish I had the answers to why those children with cis that got referred to ouir school due to falling behind. I do know of 1 case in which the child fell so far behind was due to the public school feeling that the child didn't need deaf ed service due to having the misconception that the child can percieve spoken language without visual cues. The parents said the specialist kept telling them to give the child time but that time never came.

If the publics schools tell the parents their children don't need services, don't trust that immediately and take their word for it right away. Do some research and check to see if your child is really fully involved with the lectures or discussions instead of just sitting there and acting like they know what everyone is saying. Make sure the teachers call on them to check for understanding of the lesson.

As for the other vairables..I don't have the time here at work to ask about each of the students with CI's background. We have about 40 students here with CIs out of the whole school. Some have full use of their CIs and switch back and forth between both languages and I think it is great! Then we have those who came from the public schools who didn't benefit from their CIs and their only methods of communicating is through ASL or written English.
Click to expand...

Shel,

I appreciate your posts and involvement on this hearing aid and cochlear implant part of the message board, but I read your post above as saying:

1) Expose your child to ASL.
2) Respect deaf people's opinions.
3) CI's fail. I don't know why because I don't have time to ask those who may help me find out, but they fail and I want everyone who considers a CI to know that they fail.

With all due respect, I don't find much value in this because you have no idea why these CI kids are "failing". This is especially important because someone who reads your posts about these "failures" may not know that your experiences are biased since you are involved with kids often precisely because they have had difficulties with the CI. What I mean is that you are unlikely to be involved with the CI kids who have been successful, and I think that's very important for people to know as well.

I hope you don't take offense to this, and I hope you understand my point.
 
Drew's Dad said:
On this site I read a lot of stories of cochlear implants "not working" and "failing" advanced by those who don't favor CI's. If devices are failing, or people are failing in having success with properly functioning CI's, then that's good information to know. It helps us all make informed decisions.

However, with these "statistics" and "failures" of cochlear implants that are seen here (or anywhere), it would be really valuable to know at least a couple facts about the pool of persons who were evaluated. Otherwise, the story of a "failure" has no context, and is essentially worthless.

Information the reader must have to evaluate the importance of a "failure" or "success":

1) At what age was the person implanted? Children implanted at age 9 should not be compared with children implanted at 9 months because by age 9 the neural pathways have likely atrophied and the use of those pathways has likely been permanently damaged. The gap widens as the person grows into adulthood before being implanted.

2) What year was the child implanted? 1998 is a far cry from 2007 as far as the technology of the internal electrode array goes.

3) Single or Bilateral implant? Sound localization and hearing in noisy atmospheres such as classrooms is significantly better with bilateral.

4) How aggressive of an educational path was taken? If hearing loss was detected at birth (or early on), was the child enrolled in therapy or schooling before pre-school age to "get a jump on" the speech and educational learning process?

5) What was the educational support? Were parents committed in therapy, or did they let the surgeon do his/her thing and go back to watching tv and ignoring their child?

The factors can go on and on, but with the relatively recent improvement in implant technology, hearing screening identifying hearing loss early, the availability of bilateral implants, and lowering of the implant age in children, I don't believe there is a single relevant study group sample yet from which to evaluate the current status of the benefits and/or drawbacks of cochlear implants.

New parents reading this site and others may be reading horror stories of children falling behind in mainstream educational settings, but these horror stories almost never mention any of the factors above.

I feel that a child implanted at age nine, eight years ago with a single implant will not even be in the same planet as far as "hearing" potential as a child bilaterally implanted at nine months who is enrolled by supportive parent(s) in therapy immediately.

If you have a success story or a failure to describe, please let us know as much information as possible. I think it will help us all understand what is happening out there in regard to cochlear implants and our children or friends.
Click to expand...
I'm not sure CI's are being written off. Many people have success with them. These are excellent points and if I can add one on the cause of deafness. In our case ossification from menengitis caused difficulities implanting and may also be the reason there is no benefit. The hard question is where does one find this information if it's even available?
 
Drew's Dad said:
Shel,

I appreciate your posts and involvement on this hearing aid and cochlear implant part of the message board, but I read your post above as saying:

1) Expose your child to ASL.
2) Respect deaf people's opinions.
3) CI's fail. I don't know why because I don't have time to ask those who may help me find out, but they fail and I want everyone who considers a CI to know that they fail.

With all due respect, I don't find much value in this because you have no idea why these CI kids are "failing". This is especially important because someone who reads your posts about these "failures" may not know that your experiences are biased since you are involved with kids often precisely because they have had difficulties with the CI. What I mean is that you are unlikely to be involved with the CI kids who have been successful, and I think that's very important for people to know as well.

I hope you don't take offense to this, and I hope you understand my point.
Click to expand...

Pls reread my post..I said there are some students here that put their CIs in full use and they r able to use both languages fine. We don't only serve children who didn't benefit from the CI. We serve those who have benefitted from the CI so yes, I have worked with them.

I never said "the CIs will fail"..I said there r many students who haven't been able to benefit from the CIs hence my reason why I am a strong believer in exposing the children to BOTH. Yes..respecting deaf people's advice and suggestion is important because we can offer solutions if the children doesn't benefit from the CI as opposed to listening to hearing experts who have never experienced personally what it is like to be deaf.

If u don't find value in my posts that's fine. U don't have to take what I suggest to heart. I won't take it personally.
 
shel90 said:
Pls reread my post..I said there are some students here that put their CIs in full use and they r able to use both languages fine. We don't only serve children who didn't benefit from the CI. We serve those who have benefitted from the CI so yes, I have worked with them.

I never said "the CIs will fail"..I said there r many students who haven't been able to benefit from the CIs hence my reason why I am a strong believer in exposing the children to BOTH. Yes..respecting deaf people's advice and suggestion is important because we can offer solutions if the children doesn't benefit from the CI as opposed to listening to hearing experts who have never experienced personally what it is like to be deaf.

If u don't find value in my posts that's fine. U don't have to take what I suggest to heart. I won't take it personally.
Click to expand...

The error in english is mine, and I am editing that post. You are not saying that "CI's fail", but rather that you see children with CI's failing.

I do find value in many of your posts, my point is simply that any post that says something along the lines of "a kid I know with a CI has failed" needs more info along with it.

For example, without knowing details of that child, it's like saying "Ford's are bad. My friend's engine blew up twice." If you don't know that the friend only changes his oil once every 100,000 miles, if you go around telling people that Ford's are bad, you are doing a disservice.

If, on the other hand, you feel that Ford's are bad and you tell people why you don't like them, and tell them that they blow up if you don't change the oil more than every $100,000 miles, then the person you're telling about Fords can really make a good, informed decision.

If they think that they won't change the oil before 100,000 miles, they probably won't buy a Ford because there is data out there that indicates it won't fit their lifestyle. If they'll change it every 3,000 miles, they may feel that the Ford will work for them.

I want people to know of children/adults who succeed or struggle with CI's, but context is crucial. Without it people may generalize too much toward the "Yippee, just plug it in and go" or the "CI's are worthless".
 
Cloggy said:
Excellent thread... and I hope parents that are looking for information will find it.

You are absolutely right.


In order to "show" the change in technology between 1998 and 2007; just go back to your 1998 computer.... and see how that has changed.... Would you be able to use it now??
And then realize that CI is a lot to do with computer -power... Systems from 1998 can be upgraded to 2007 software, but obviously will still work with 1998 processors and other hardware...

But that's only the beginning, perhaps 5% of the CI-system. (And that part hardly ever fails...)
The rest is parents, teachers, motivation, support, etc. etc... If they are not geared to make it work.... results will show.
Click to expand...

Ahh, you used the analogy I gave you in a previous thread. See there, there are some things we agree on Cloggy!:giggle:
 
Drew's Dad said:
The error in english is mine, and I am editing that post. You are not saying that "CI's fail", but rather that you see children with CI's failing.

I do find value in many of your posts, my point is simply that any post that says something along the lines of "a kid I know with a CI has failed" needs more info along with it.

For example, without knowing details of that child, it's like saying "Ford's are bad. My friend's engine blew up twice." If you don't know that the friend only changes his oil once every 100,000 miles, if you go around telling people that Ford's are bad, you are doing a disservice.

If, on the other hand, you feel that Ford's are bad and you tell people why you don't like them, and tell them that they blow up if you don't change the oil more than every $100,000 miles, then the person you're telling about Fords can really make a good, informed decision.

If they think that they won't change the oil before 100,000 miles, they probably won't buy a Ford because there is data out there that indicates it won't fit their lifestyle. If they'll change it every 3,000 miles, they may feel that the Ford will work for them.

I want people to know of children/adults who succeed or struggle with CI's, but context is crucial. Without it people may generalize too much toward the "Yippee, just plug it in and go" or the "CI's are worthless".
Click to expand...

I think the point that shel and I are trying to make in all of our discussions is that despite the increase of children being implanted, the same educational and language acquisition difficulties are still being experienced by deaf kids all over the US. Of course, a child with CI requires remedial services, and it is a huge undertaking for the parent. Usually the parent is hearing and has no experience with CI. However, the therapies recommended for an implanted child are the same sort of auditory verbal therapies that have been recommended for years for children with HA. The advance in technology has truly increased the ability to perceive sound for many deaf individuals and that is a good thing for many, and a less than desirable thing for others. The problem is that the incresed ability to perceive sound is not addressing the fundamental issue of language acquisition, and is allowing the focus on sound perception to cloud the issue of the most effective way to address all of the deaf child's needs rather than the limited issue of perceiving/not perceiving sound.

Until we understand that deafness is more than an issue of sound perception, we will contiue to give our deaf children much less than they deserve in the opportunity to live up to their full potential.
 
jillio said:
Oh, and shel--please forgive me for speaking for you.
Click to expand...

Nah..that's ok..we view things in the same way so I trust u.

Drew's Dad..ok I understand now what exactly you all r looking for.

Good luck on finding the info! Rockdrummer said something about "soft" failures in another thread...I am not sure what exactly that means but it seems like important info too.
 
shel90 said:
Nah..that's ok..we view things in the same way so I trust u.

Drew's Dad..ok I understand now what exactly you all r looking for.

Good luck on finding the info! Rockdrummer said something about "soft" failures in another thread...I am not sure what exactly that means but it seems like important info too.
Click to expand...
Shel, I did explain my meaning of soft failures in that thread. Simply put, they are failures that are not related to the hardware itself. The processor is communicating with the reciever and the CI is programmable but no benefit is gained. (for whatever reason). That is what I consider a soft failure. I agree with Drew's dad on the fact that the Soft failures need to be broken down into catagories as to what the cause. (see the opening post in this thread). For that matter ALL failures should be painfully catagorized and that information should be available to anyone faced with the CI decision. IMO..
 
I understand, I am not writing off cochlear implants, but you have to understand one thing, those who received cochlear implant at the younger age, some of them have not learned sign language or continue to use sign language, because parents don't think it was/is even necessary. But, in my opinion, I think it is, because cochlear implant will never be the same as a "normal" hearing, but I guess it’s as good as it gets. I'm most certain you've watched the the movie of "Sound of Fury"? You can see how many cochlear implants children had no knowledge of signs, not even their parents. If the child does know sign language, they are more able to balance both the deaf world and the hearing world. I think that attitude will change in the deaf community about cochlear implants if those parents would learn and teach their cochlear implants children sign language, because the deaf community felt threaten by how some parents with cochlear implants children are shutting them out from the deaf world. And this is how I feel as a deaf person also. ;)

Other than that, Good post you made there Drew's Dad ;)
 
rockdrummer said:
Shel, I did explain my meaning of soft failures in that thread. Simply put, they are failures that are not related to the hardware itself. The processor is communicating with the reciever and the CI is programmable but no benefit is gained. (for whatever reason). That is what I consider a soft failure. I agree with Drew's dad on the fact that the Soft failures need to be broken down into catagories as to what the cause. (see the opening post in this thread). For that matter ALL failures should be painfully catagorized and that information should be available to anyone faced with the CI decision. IMO..
Click to expand...

Either I overlooked your post explaining it or I forgot that I read it. Thanks
 
I'm glad to see this issue being addressed in a positive and educative manner. It
really might help people see both sides, and those who are "against" CI's might even look inside themselves and see if their being against them is based on a scientific basis, or simply because they hate anything that relates to "hearing" (an attitude I see a lot here, unfortunately.)

So many people who say they are against CI's don't take the time to educate themselves before hand, simply tossing things they heard others say, or outright making things up. For example so many ask "well why can't you just use hearing aids instead of CI's?" without realizing that a child who CAN benefit from a hearing aid is NOT a candidate for a Ci anyway.
 
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