How to Decide on Cochlear Implant Surgery for Children

[shel90]

funny, I always end up wearing one hearing aid. I had two, but for some reasons, I had to wear just one. I never knew why either. My sister was the same way. She couldn't stand wearing two hearing aids.

My brother couldnt stand wearing one hearing aid while I MUST have them. It is weird how that works out, isnt it?

 

[shel90]

Why should she have one good ear and one bad ear, if she can have 2 good ears? What on earth is wrong with that? They gave her 2 HA's because bilateral hearing is superior to unilateral, so why would it be different for CI's. All the research, for HA and CI's show that having 2 ears is better.

As I got older, wearing 2 hearing aids started causing me problems from feeling dizzy and migraines so I stopped wearing them for a while. Of course, I missed hearing sounds and needed them to help with lipreading so I started back with one and have had one since then. No problems with dizziness or headaches. It is weird how, for some people, being able to hear from one ear is better than two while for others, none is better but then there are those who needs two. Just weird how that works for many of us.

 

[deafdyke]

Why should she have one good ear and one bad ear, if she can have 2 good ears?

Um she has a hoh ear and a deafer ear..Not a good ear or a bad ear.
She can still use her other ear some.
I'm not saying it's not a good thing to be able to acheive hoh listening levels in both ears.
Just that it may not be that vital. If Miss Kat had a very deep profound loss, with NO benifit from HA (or severe recruitment or whatever) in her aided ear I'd be encouraging you to get her implanted ASAP.
However, the end results of bilateral implantation have been mixed. Some people do indeed love them but I also recall that there are already a significent number of kids and teens who have been bilaterally implanted who are already only using one.
Since it's a hit or miss thing, and since the benifit isn't that huge (remember......even AG Bell says that the benifit is ease of hearing in noise and sound localization.......Nothing MAJOR) Also, if she realizes she's not a huge fan of the second CI, there'd be no going back to using a hearing aid.

 

[sr171soars]

I don't have a problem with any of those things. If it an improvement, why NOT do it?

Bilaterals make a huge difference for the ear you implant. It would improve Miss Kat from 25% up to near 90%, how is that not significant?

Just curious, where do you get those figures from? I've not seen nor heard that anywhere.

Why should she have one good ear and one bad ear, if she can have 2 good ears? What on earth is wrong with that? They gave her 2 HA's because bilateral hearing is superior to unilateral, so why would it be different for CI's. All the research, for HA and CI's show that having 2 ears is better

Going bilateral is never the same in terms of impact compared to getting the one first CI. The biggest impact is better speech discrimination especially with background noise. The sound "localization" is an oversold benefit that is not critical in the scheme of things. Not to say it wouldn't be useful which it most certainly can be. Just for this fact alone I wouldn't bother getting a second CI. I lived long enough without it and I don't miss a beat. As for hearing speech better all around, now that would be a good reason to go bilateral.

There are arguments for and against going bilateral. You and others have indicated the positive aspects. Nothing wrong with that and they are good considerations.

On the other hand, there are two reasons one might not consider going bilateral.

1) Significant financial considerations. One is expensive enough and two makes even more burdensome. At today's prices, a new process is ~$8000 and a trade up is ~ $5500. Not an easy decision for one much less for two.

2) There is no guarantee that a second CI would be equal or better than the original.

It all really comes down to how one does with one CI. Many probably can easily live with just one and the second being a possibility they may consider one day. I'm in the category with odds being slim that I ever actually pursue that option. The big stumbling block for me is the cost more than anything else.

 

[sallylou]

I started out with one HA and it drove me nuts. I ended up getting the second one about a month later. I felt very unbalanced. Sound location was really bad (still bad with 2 HAs but slightly better). I have vestibular issues and this may be why I needed 2 HAs. Bilateral versus unilateral HAs is an issue that depends on the particular needs of the person wearing them. I don't know if the issues with CI are similar.

 

[rockdrummer]

My brother couldnt stand wearing one hearing aid while I MUST have them. It is weird how that works out, isnt it?

I have always said that everyone is different. What works for one person may not work for another. We are like snowflakes.

 

[faire_jour]

Just curious, where do you get those figures from? I've not seen nor heard that anywhere

Those are daughter's HA and CI speech discrimination scores. She gets about 25% from her aid and about 90% from her CI. I was saying that going bilateral could bring her 2nd ear up to match her 1st.

 

[deafdyke]

It is weird how, for some people, being able to hear from one ear is better than two while for others, none is better but then there are those who needs two. Just weird how that works for many of us.
__________________

Exactly!!!!! Nobody's saying it's not good to be able to hear really well in both ears. We're just saying that it does seem like response to various and sundry hearing instruments seems to be a very indivdual thing. Lots of people have uneven losses but can get along with not having their worse ear aided/implanted with the "best"
A second CI MIGHT be a good thing............but then again, Miss Kat might be perfectly happy with just a bimodal approach. Have you heard about the teens who have been bilaterally implanted who have stopped using the second one? That's an indication that a bilateral implant might not be ALL that. Besides, the best results are kind of minimal..........localization of sound and ease of hearing in crowds. There's no guarentee that she could do better then with her hearing aid. She's got localization of sound AND can hear better in crowds (then someone with just one CI) PLUS she has 25% speech perception.
I think b/c it's so indivdual that you should wait til Miss Kat is a little older so she can help decide about a second implant. Remember she's still got some use out of a hearing aid......... and while that isn't as amazing as her 90% performance with her CI, it's still helping her. Wait a while......heck, maybe even try the SUMO power aid.
She's doing awesome! MANY people do well even if they have unevenly amplified losses.
Remember it works TOGETHER...........and a lot of people use a bimodal approach.....

 

[jackiesolorzano]

The main reason why bilaterals are generally considered a "luxury"...

There is a cost associated with everything. Since most CIs are funded via societal efforts (i.e., insurance, gov't funding, private foundations and etc.), it becomes an issue in how best provide maximum "benefits" to the population at large.

It has been shown that one CI provides the best "bang for the buck" and thus such "generosity" focuses on at least providing that option. In cases where it is deemed necessary (i.e., deaf blind and other scenarios), then bilaterals make sense. ***Remember, having one good ear is sufficient for most people to get along as productive members of society.

Now it seems that in some instances (at least here in the US), insurance companies have started to cover bilaterals. Whether that will become a general trend, that remains to be seen. I guess the big question for insurance companies is whether or not this would be a good way to allocate scarce resources (i.e., limited funds). It all comes down to money as always.

In California, the state's medical insurance plan is now approving bilateral implants in children. And most insurance plans are covering bilateral implants. My son just received his second implant and we got approval in less than a month.

 

[faire_jour]

Exactly!!!!! Nobody's saying it's not good to be able to hear really well in both ears. We're just saying that it does seem like response to various and sundry hearing instruments seems to be a very indivdual thing. Lots of people have uneven losses but can get along with not having their worse ear aided/implanted with the "best"
A second CI MIGHT be a good thing............but then again, Miss Kat might be perfectly happy with just a bimodal approach. Have you heard about the teens who have been bilaterally implanted who have stopped using the second one? That's an indication that a bilateral implant might not be ALL that. Besides, the best results are kind of minimal..........localization of sound and ease of hearing in crowds. There's no guarentee that she could do better then with her hearing aid. She's got localization of sound AND can hear better in crowds (then someone with just one CI) PLUS she has 25% speech perception.
I think b/c it's so indivdual that you should wait til Miss Kat is a little older so she can help decide about a second implant. Remember she's still got some use out of a hearing aid......... and while that isn't as amazing as her 90% performance with her CI, it's still helping her. Wait a while......heck, maybe even try the SUMO power aid.
She's doing awesome! MANY people do well even if they have unevenly amplified losses.
Remember it works TOGETHER...........and a lot of people use a bimodal approach.....

But, right in your post, you say that some teens who go bilateral stop using the second. So why would I wait until the success rate goes down to do it? Children adapt better, and if she has them done close together she is less likely to have a "prefered" ear.

 

[sr171soars]

In California, the state's medical insurance plan is now approving bilateral implants in children. And most insurance plans are covering bilateral implants. My son just received his second implant and we got approval in less than a month.

I heard that it was starting to be covered. I'm glad to hear your son got his second one. While having a 2nd CI is really nice, it doesn't negate the fact it is a luxury.

Just be aware that nothing is cast in stone given all the uncertainty with health insurance coverage. I don't believe it will be the official trend when all is said and done. If some form of health insurance reform passes and it is looking more and more likely, then all bets are off. They will do the same as in Europe and decide that one is enough for most individuals.

What nobody here and elsewhere is willing to admit, there are cost considerations to medicine when "greatest good the greatest number". Society at large is still trying to figure out what total costs can be born for all the modern conveniences we experience today. As we are all finding out, it is not an easy thing.

 

[jackiesolorzano]

But, right in your post, you say that some teens who go bilateral stop using the second. So why would I wait until the success rate goes down to do it? Children adapt better, and if she has them done close together she is less likely to have a "prefered" ear.

You are completely righ. I have been working with preschoolers that have bilateral implants the closer the implants are in time the better it is for the child.

 

[deafdyke]

Bilateral versus unilateral HAs is an issue that depends on the particular needs of the person wearing them. I don't know if the issues with CI are similar.

EXACTLY!!!!!!! I think that the bilateral CI question (except for some groups like the deep profounders or deafblind) is going to be very dependant on the person.
faire_jour....I really don't know all too much about the specifics of the teens who stopped using their second one. But it may not have been due to getting implanted late. The reason behind stopping the second implant may be due to ALL sorts of factors.
They could have been implanted as kids and then decided they do fine with one implant.
If you want I could find out more information.
Because they were first generation bilateral implants, they could have all been deep profound. Miss Kat has a HUGE advantage in that she even has some speech abilty in her aided ear. ALSO, she has a progressive loss right? Her hearing in that ear was better a few years ago right? Her brain will still remember how to process sound in that ear for a couple of years. Remember........kids are CONSTANTLY learning and picking up new skills and abilities. They don't get to one age and then stop learning.
I have to say I think you're a bit afraid that if Miss Kat doesn't get the absolute best whatever, she won't do well. That's basicly one of the pyschological tools that audist pro oral experts use. Miss Kat is doing really well right now.......you know if she didn't have such awesome speech perception on her implanted ear, I would encourage you to get her implanted. But she has AWESOME speech perception........and is doing really well. It might be in this case that a second implant may not be the appropreate option. I gotta say......I do think that in cases like these the decision to get a second implant should be made by both the kid AND parent.
Yes, she has some spoken language delays, and she may never have perfect spoken language, but she is doing awesome!!!!

 

[deafdyke]

Y

ou are completely righ. I have been working with preschoolers that have bilateral implants the closer the implants are in time the better it is for the child.

Jackie, define better. They still have significent speech and language delays right?
How do you know they weren't profound in both ears? In this case Miss Kat has 90% speech compehension in one ear, but still has some speech perception in the other ear.
It's not a right off the bat thing. I think bilteral CIs are awesome for those who REALLY need them.

 

[rockdrummer]

How would you differentiate between someone that really needs one. What is the criteria of need.

 

[Mountain Man]

Having only briefly read the thread, I will only briefly comment:

I have a 4-year old Deaf son (yes, we consider him "big-D" Deaf), and when he is old enough to completely understand the ramifications of cochlear implants then he will be making his own decision, and my wife and I will fully support him.

 

[deafdyke]

I heard that it was starting to be covered. I'm glad to hear your son got his second one. While having a 2nd CI is really nice, it doesn't negate the fact it is a luxury.

Just be aware that nothing is cast in stone given all the uncertainty with health insurance coverage. I don't believe it will be the official trend when all is said and done. If some form of health insurance reform passes and it is looking more and more likely, then all bets are off. They will do the same as in Europe and decide that one is enough for most individuals.

What nobody here and elsewhere is willing to admit, there are cost considerations to medicine when "greatest good the greatest number". Society at large is still trying to figure out what total costs can be born for all the modern conveniences we experience today. As we are all finding out, it is not an easy thing.

Exactly!!!!!! Thanks sr171soars! I feel like I'm being portrayed as a Scrooge or something.
I will say that I do think the insurance companies should allow bilateral implantation if the first implant does not access at least 65% speech, and if the speech perception is poor even aided.
The fact of the matter is that right now a second CI simply enhances sound directionality
and ease of hearing in crowd situtions. That's nice and all.......but many implantees can get that with a hearing aid. I just think that the implantation criteria for a second implant should be MUCH stricter.

 

[rockdrummer]

Having only briefly read the thread, I will only briefly comment:

I have a 4-year old Deaf son (yes, we consider him "big-D" Deaf), and when he is old enough to completely understand the ramifications of cochlear implants then he will be making his own decision, and my wife and I will fully support him.

That is an excellent point. At what age would you guess he would be when he completely understands the ramifications of CI's?

 

[faire_jour]

Having only briefly read the thread, I will only briefly comment:

I have a 4-year old Deaf son (yes, we consider him "big-D" Deaf), and when he is old enough to completely understand the ramifications of cochlear implants then he will be making his own decision, and my wife and I will fully support him.

And if he decides to get a CI, as an adult, he will likely get a very different result then he would if he was implanted as a child. Most pre-lingually deafened adults, who receive CI's as adults, do not end up understanding spoken language through listening. Children implanted generally do.

That is absolutly your right to decide, and it is a vaild decision, so long as you understand the ramifications.

 

[shel90]

Having only briefly read the thread, I will only briefly comment:

I have a 4-year old Deaf son (yes, we consider him "big-D" Deaf), and when he is old enough to completely understand the ramifications of cochlear implants then he will be making his own decision, and my wife and I will fully support him.