Ashley's CI surgery

Oh and everyone

Spring 2005 - Volume13 Issue3
from the Research Update

Currently, very little information is available about children who are deaf-blind and have cochlear implants.
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That's not to say that I don't think that deafblind kids or multiplely handicapepd kids shouldn't get implanted. It's just that the jury is still kind of out on exactly HOW well implantation will benifit not just dhh kids.
 
If you refer to the websites below, you will see several articles which discuss the benefits deafblind children and adults receive from CIs:

Welcome to CI Hear 's Deafblind Information Page

Check the links that read "Deaf-Blind Shown to Benefit from Cochlear Implant," "Cochlear Implants Found To Help Deaf-Blind Patients" and "Breakthrough for Deaf-Blind."

"Cochlear Implants Found to Help Deaf-Blind Patients Recognize Speech"

Cochlear implants found to help deaf-blind patients recognize speech

"Multichannel Cochlear Implant in a Deaf-Blind Patient"

Multichannel Cochlear Implant in a Deaf-Blind Patient
 
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deafdyke said:
If a stone deafie gets that much benifit from a new hearing aid.......maybe some of the borderlines would get a boost by just experimenting with different hearing aids.
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Again, this is where hearing aid benefit (and hearing in general) differs from person to person. Just because someone with a very profound loss benefits from HAs, it doesn't mean the same will be true for someone with a severe or severe-profound hearing loss.

No two people with identical audiograms hear exactly the same. You could have two people with severe-profound loss -- one receives significant benefit from HAs while the other does not. You could also have someone with severe-profound hearing loss who understands 85% of speech with HAs while someone with moderate loss only understands 15%.

Body aids aren't commonly used in the United States. I've worn HAs for over 20 years and not once did any of my audis (3 in 20+ years) recommend a body aid.

I was told by my former CI audi that there are very few manufacturers of body aids which can make it difficult for them to be repaired.

In fact, I just did a Google search and found only one vendor for body aids:

Order Body Aid Hearing Aids Online with LloydHearingAid.com

Even if body aids were commonly available in the U.S., not everyone wants to deal with the extra bulk (compared to BTEs) and cords.
 
Oh and I definitly am VERY pro implantation for deaf blind kids........they need as much stimulation as possible. Even enviormental sound awareness will help them.
 
deafdyke said:
Oh and I definitly am VERY pro implantation for deaf blind kids........they need as much stimulation as possible. Even enviormental sound awareness will help them.
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I'm glad you and I agree DD. :)

Environmental sound awareness is one of the most important benefits a deafblind child or adult can receive from a CI.

When I decided to receive a CI, I promised myself that I would be just as happy with my CI if I could only hear environmental sounds. Prior to my CIs, I couldn't hear traffic, a knock at the door, sirens, a fire alarm or a smoke detector with my HAs. Several months before receiving my first CI, I was locked inside a building because I didn't hear people leave.

Now that I have CIs, I'm able to hear all of the sounds I mentioned above and feel *so* much safer as a result. Even if I were unable to understand speech with my CIs, I would still consider them a success. :)
 
That is how I feel with Ashley. Even if it only helps her a tiny bit that is more than she gets now without the implants. Because we exhausted all other means to help her hearing I know we made the right choice.
 
I believe you made the right choice as well.

I will be following your story and can't wait to see how sweet Ashley does with her CI.
 
Even if body aids were commonly available in the U.S., not everyone wants to deal with the extra bulk (compared to BTEs) and cords.
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well maybe if the manufactors made the body worn aids look cool. Like the body worn processor for the CI looks really cool..........like an iPod.
 
deafdyke said:
well maybe if the manufactors made the body worn aids look cool. Like the body worn processor for the CI looks really cool..........like an iPod.
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DD,

THAT could work. :) I wish I had cool looking HAs when I started wearing them at age 15. Unfortunately, I was stuck with beige! :(
 
momtotoes said:
I believe you made the right choice as well.

I will be following your story and can't wait to see how sweet Ashley does with her CI.
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Thank you. Everyone here has been so great about giving me advice and suggestions to help me with Ashley. I am sure she will surprise us all. She seems to do that a lot.
 
When I decided to receive a CI, I promised myself that I would be just as happy with my CI if I could only hear environmental sounds. Even if I were unable to understand speech with my CIs, I would still consider them a success.
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I have to say, that I really really like your and Lucia's attitude towards the end hearing results that a CI can give you. On some other (unmentiable) sites, they are VERY into the CI hype. Like they make it sound like EVERY deaf kid will hear speech with a CI. Unfortunatly it's just so hard to tell........I really think that parents and recipeents have the right to know that the CI is a wild card for which everything is possible, but nothing is 100% promised. I mean you yourself have admited that end results vary HUGELY!!!!

Almost forgot, ashleysmom, did you notice the oral preschool for implanted kids? Maybe for her first year there you could concentrate more on deaf education, and try to find the perfect fit for her. Like have her be in an oral class for a couple of days, and then have her attend a TC class.
 
momtotoes said:
I believe you made the right choice as well.

I will be following your story and can't wait to see how sweet Ashley does with her CI.
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How is your daughter doing with her implant? I haven't kept in touch much, but I am sure everyone would like to know how she is doing. I am sure she is doing great!!!
 
I didn't realize how many children there were out there with implants. Most with bilateral. I think that is great. It helps moms like me because we have so many people to look to for advice and support that have gone through and are going through the same things. Thanks !!!
 
There are alot of kids with CIs running around. But, the majority of them are not bilateral. The bilat kids are becoming more popular, but they still seem to be a vast minority. For example, I just found out the other day that Lilly is only the third kid at Lillys school. The 1st one is the only one that has been activated yet. The 2nd had her 2nd CI surgery 2 weeks ago.
There does seem to be an emerging trend of bilat implant surgery right off the bat. To me, that is encouraging.
 
I have had several here, several on cicircle, and on a local circle that are bilateral. I have even talked with the mom of the first same day bilateral kid from Ashley's doctors office. Ashley will be her second or third same day case. Other parents have told me that it is the best thing they ever did for their child. Some even wish same day surgery would have been available when they had the first. The technology is just getting better and better. It is very encouraging !!
 
Most definately! The technology is improving, along with the research. But the problem becomes, if you do not get both doen at the same time, or with the same insurance authorization, you will have one hell of a fight to get the other ear.

Bilat CI is slowly becoming the way to go. The insurance companies are the ones who are trying to stop it only because they do not want to pay for it.
 
We are lucky. Ashley's doctor told us not to worry about the insurance. She said I have ways to make them pay. She has been fighting them for a while now and knows some ways to get things to go through. Speaking of new technology. Med-El has a new implant and processor. The implant is waiting for FDA approval in the US and the processor is only in trial but to come out in spring. We were hoping they would be available before March but they said they should be able to upgrade her program to match new implant and we would get a voucher to trade old processor in for the new at no cost. I spoke with her audiologist about them yesterday.
 
ashleysmommy said:
We are lucky. Ashley's doctor told us not to worry about the insurance. She said I have ways to make them pay. She has been fighting them for a while now and knows some ways to get things to go through.
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Surgeons and audis know what kind of information is needed for insurance approval. All that is usually required (besides audiogram and CT results) is a letter of medical necessity.

In the case of a child or adult who is deafblind, it is pretty much a given that insurance will pay for bilaterals whether they are simultaneous or sequential (although I'm sure there are exceptions).

When my CI surgeon recommended bilaterals for me at my 9 month post-op, I was concerned about insurance, but he assured me this wouldn't be a problem given my total blindness. He was right. Both of my CIs were approved by Medicaid the first time around.
 
I cannot comment about the deaf/blind issues because I have not experienced that aspect. But, I can tell you from experience that alot of insurance companies have exclusions written into the policy that allows the compant to reject covering a CI. They have the small print that says it is allowed if it is medicalll ynecessary, and the ins co feels that it is necessary. Heres the rub, the repeatedly tell you that the panel says it isd not necessary.
 
The bilat kids are becoming more popular, but they still seem to be a vast minority.
There does seem to be an emerging trend of bilat implant surgery right off the bat. To me, that is encouraging.
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Well it's not extremely rare, but I mean I think that it's probaly going to be the new analog vs. digtal debate. There will be some kids who get them right off the bat (especially deaf-blind and auditory nereopathy kids) but, I really think it's going to be more mixed. After all, there's still a significent population of kids who get some speech benifit with a hearing aid in the other ear. That speech understanding coupled with the input from a CI can be really good.
It's hard to say.........but I think that the reason its on people's radar is that the kids who really need it are getting it now. I think the percentage of CId kids who have bilats will crest and reach a platou.....I don't think it will be like when they started doing bilateral hearing aid fittings..........I really think that bilateral CIs will be relatively rare. Not as rare as say, body worn aids or other "alternative" technologies like an inner ear implant. But I don't think they'll be as common as bilateral hearing aids.
 
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