We Need Current Info Before Writing Off Cochlear Implants

[shel90]

There is this 3 year old boy that I know who got implanted when he was 1. He keeps throwing a fit everytime people try to put the processor on and will take it out. I do not know why they keep trying to get him to wear it after 2 years of having a fit everytime his CI is turned on. I have seen this kid's fits and it is like he was totally out of control. It breaks my heart to see that but I cant tell the parents what to do.

Anyways, my point for bringing that up..even with all the mechanics working in the CI, would that be considered a success even though he hasnt developed any oral skills? Just curious. To me, it is not a success.

 

[R2D2]

There is this 3 year old boy that I know who got implanted when he was 1. He keeps throwing a fit everytime people try to put the processor on and will take it out. I do not know why they keep trying to get him to wear it after 2 years of having a fit everytime his CI is turned on. I have seen this kid's fits and it is like he was totally out of control. It breaks my heart to see that but I cant tell the parents what to do.

Anyways, my point for bringing that up..even with all the mechanics working in the CI, would that be considered a success even though he hasnt developed any oral skills? Just curious. To me, it is not a success.

I don't think anyone here would consider that case, from the information that you have provided, a "success" either. There is a considerable raft of independent studies that have been conducted over the years, that have assessed the ability of the CI to translate into language acquisition for young children. These can be found on Entrez PubMed So it's not as if everyone just routinely counts every successfully operated CI a "success" across the board.

 

[rick48]

Jillio, have you ever sat in on an AV lesson? I'm not sure but my guess is no. It's all about playing games and learning at the same time. It's not as cut throat as you think. Most of the time my daughter dos'ent want to leave when the hour is up. It is not forced by no means. To her it's experiencing with new games every week and for me it's learning how to make play time a learning experience at home with her.

Kayla,

We did not do AV but I agree with what you said. Our experiences were very similar. It was creative and positive and enjoyable while at the same time a learning experience.
Rick

 

[jillio]

Kayla,

We did not do AV but I agree with what you said. Our experiences were very similar. It was creative and positive and enjoyable while at the same time a learning experience.
Rick

Suggestion: Read Psychology of Deafness, Volume 2 by Mark Marshark. He details the effects of AV theraphy and the structured teaching of oral language skills tothe deaf child on not only the child but on the parent child relationship and the psychological impact it has on development.

 

[LTHFAdvocate]

This entire thread started because of someone posting:

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.

Drew's Dad made an extremely valid point because I also agree that it seems that when you hear about a CI "not working" you rarely hear about WHY it isn't working, and the impression that is left is that something is wrong with the CI itself, when frequently that isn't the case. Success in cochlear implantation requires at least four elements:

1) The proper candidates being selected
2) Appropriate expectations being set
3) The equipment working
4) Follow up audiology and therapy

There are multiple individuals responsible for making sure that each of these steps happen. If a bad candidate is selected or appropriate expectations are not set, that is the fault of the surgeon and/or audiologist during the pre-surgery consultation period. If the electrode physically doesn't work, that is the fault of someone who handled the device somewhere along the way -- generally either the manufacturer or someone in the OR if the device is broken or put it in the wrong position during surgery. It is the patient's responsibility to follow up with appropriate mapping or therapy, and unfortunately, that doesn't always happen.

I have worked with over 500 implanted individuals over the past 18 months. Most of the times the implant works, and works well. When it hasn't, the reason it hasn't worked has always been one of the four reasons I listed above. From what I have seen, actual equipment failures is generally the least common of those four reasons for failure.

So if the internal electrode is still working, but the patient receives no benefit from the devise, it is still considered to be successful? Does that also mean that the purpose of implantation is simply to provide the patient with a working electrode and not to provide usable auditory function at some level? I may be confused, but I thought CI was to assist the deaf with gaining that which they do not have. Of course, I guess they didn't have an electrode prior to surgery either, so they were given something they did not have. Just seems to me that if a devise is intended to accomplish a specific purpose, and it doesn't accomlish that for which it was intended no matter how well the individual parts are working on a mechanical level, it hasn't been very successful. Of course, I am looking at things from the deaf person who has been implanted perspective, not the manufacturer wishing to sell more implants perspective.

 

[LTHFAdvocate]

That's interesting - I never heard that. I have Waardenburgs syndrome but the CI has worked out very well for me. I did find a paper on Pub Med that involved a study of children within Waardenburgs who were implanted and it found they had above average results so obviously there is variability even within questionable groups.

It is one of the specific Waardenburg subtypes -- Type II. But I think even within THAT group, there is extreme variability.

 

[rockdrummer]

This entire thread started because of someone posting:



Drew's Dad made an extremely valid point because I also agree that it seems that when you hear about a CI "not working" you rarely hear about WHY it isn't working, and the impression that is left is that something is wrong with the CI itself, when frequently that isn't the case. Success in cochlear implantation requires at least four elements:

1) The proper candidates being selected
2) Appropriate expectations being set
3) The equipment working
4) Follow up audiology and therapy

There are multiple individuals responsible for making sure that each of these steps happen. If a bad candidate is selected or appropriate expectations are not set, that is the fault of the surgeon and/or audiologist during the pre-surgery consultation period. If the electrode physically doesn't work, that is the fault of someone who handled the device somewhere along the way -- generally either the manufacturer or someone in the OR if the device is broken or put it in the wrong position during surgery. It is the patient's responsibility to follow up with appropriate mapping or therapy, and unfortunately, that doesn't always happen.

I have worked with over 500 implanted individuals over the past 18 months. Most of the times the implant works, and works well. When it hasn't, the reason it hasn't worked has always been one of the four reasons I listed above. From what I have seen, actual equipment failures is generally the least common of those four reasons for failure.

Actually there are other factors involved with success. A major one is if the implant was inserted properly by the surgeon and they didn't damage the cochlea. Another is cochlear ossification or cochlear malformations which could play a major roll in the success of the individual. The malformation may be detectable but ossification from what I am told is not that easy to detect. Additionally there are patients that only recieve stimulation in sub frequency ranges so technically everything is working but the patient will not ever get anything useful from the CI no matter how much therapy and support they get. There are many such cases that I have heard of and the situation with my son is a case in point. The big problem I see is that the soft failures are not reported. The FDA's and OEM's success statistics are based on the device functioning properly and nothing more. The success reported by surgeons only involves their portion which is the implantation. I completely agree that each success and failure should be painfully detailed. Unfortunately that is not happening and I am not even sure what needs to be done to make it happen.

 

[shel90]

Actually there are other factors involved with success. A major one is if the implant was inserted properly by the surgeon and they didn't damage the cochlea. Another is cochlear ossification or cochlear malformations which could play a major roll in the success of the individual. The malformation may be detectable but ossification from what I am told is not that easy to detect. Additionally there are patients that only recieve stimulation in sub frequency ranges so technically everything is working but the patient will not ever get anything useful from the CI no matter how much therapy and support they get. There are many such cases that I have heard of and the situation with my son is a case in point. The big problem I see is that the soft failures are not reported. The FDA's and OEM's success statistics are based on the device functioning properly and nothing more. The success reported by surgeons only involves their portion which is the implantation. I completely agree that each success and failure should be painfully detailed. Unfortunately that is not happening and I am not even sure what needs to be done to make it happen.

Wow! Very helpful and interesting info.

 

[rockdrummer]

Wow! Very helpful and interesting info.

Thanks.. that's based on my understanding and anyone please correct me if I am mis-informed on any of that.

 

[LTHFAdvocate]

Actually there are other factors involved with success. A major one is if the implant was inserted properly by the surgeon and they didn't damage the cochlea. Another is cochlear ossification or cochlear malformations which could play a major roll in the success of the individual. The malformation may be detectable but ossification from what I am told is not that easy to detect.

I agree with you, and in fact, included those in my discussion -- I clearly addressed surgeon's mistake under #3, which I categorized as an equpiment failure, caused by the person doing the surgery. I believe cochlear ossification/malformation comes under a combination of #1 and #2 -- the proper candidates need to be selected and expectations need to be set. If you have a pre-lingually deaf child with a common cavity or a meningitis patient with ossification so bad that the cochlea has to be completely drilled out, they should not be expecting open set word recogition the day they are activated. While some sound may be better than no sound under those circumstances, that is up to the patient to decide, and a situation where serious patient counseling is required.

You are also right that there is no clear category for "soft failures." I probably don't understand this situation nearly as well as you do since I don't have a child who has experienced it. However, I think my definition of soft failure differs from yours (and mine may very well be wrong). Your definition was

failures that are not related to the hardware itself"

My definition of a soft failure is a failure that you haven't proven to be the hardware. In which case, that begs the question "when does a soft failure become a hard failure?" A 2004 study by Dr. Buchman at UNC said that 90 % of the 16 people he did revisions for with with soft failures experienced "significant improvements in auditory performance" after the device was replaced. This is consistent with the limited experience I have with doing appeals for individuals diagnosed with "soft failures" all four had vast improvements when their electrode was replaced. Of course, Dr. Buchman's study still leaves 2 patients with soft failures who didn't get improvement from the replaced device.

I admit I have a very skewed perspective because I don't know anyone who has experienced a soft failure who didn't have the device replaced. But, if a patient has a "soft failure" where the problem completely clears up after the electrode is replaced, I truly think that was just a hard failure in soft failure clothing.

In the end, regardless of our different definitions of soft failure, I think we agree that way better tracking would be beneficial to everyone in making informed decisions.

 

[R2D2]

My definition of a soft failure is a failure that you haven't proven to be the hardware. In which case, that begs the question "when does a soft failure become a hard failure?" A 2004 study by Dr. Buchman at UNC said that 90 % of the 16 people he did revisions for with with soft failures experienced "significant improvements in auditory performance" after the device was replaced. This is consistent with the limited experience I have with doing appeals for individuals diagnosed with "soft failures" all four had vast improvements when their electrode was replaced. Of course, Dr. Buchman's study still leaves 2 patients with soft failures who didn't get improvement from the replaced device.

I admit I have a very skewed perspective because I don't know anyone who has experienced a soft failure who didn't have the device replaced. But, if a patient has a "soft failure" where the problem completely clears up after the electrode is replaced, I truly think that was just a hard failure in soft failure clothing.

In the end, regardless of our different definitions of soft failure, I think we agree that way better tracking would be beneficial to everyone in making informed decisions.

Thanks for sharing that interesting information, that was how I understood soft failures as well. It's good to know that people who experience soft failures are treated seriously to the point of having their devices replaced.

I also get the impression that such soft failures as you have defined them, are not very common.