Ashley's CI surgery

Good Luck :):):)
 
Thanks again for all of the well wishes. The support and feedback here is great. Your wisdom and advise will help tremendously as Ashley's surgery date draws closer. Good luck to you all and if you think of any thing else keep it coming.
 
Hear Again said:
DD,

That may be true, but your posts on AD seem to come across as if you are discouraging parents or adults from getting CIs. Even if a child or adult is only able to hear environmental sounds with a CI, they are right back where they started and haven't lost anything. However, if they opt for the CI and are able to function as a "hearing" person or someone who is hard of hearing, they've gained so much more than they ever could with HAs. I just wish you would be a little more optimistic and encouraging about CIs -- that's all.

What do you mean by "almost hearing?"
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Hear Again, good post! :h5:
 
ashleysmommy said:
I know how hard it can be to stay positive first hand. Try to remember what you are fighting for and the prize at the end.
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This could make a wonderful quote! Ashley will be all right with a loving mother like that! Also I love your quote about a smile adding to face value! Ashley is a cutie (I have two Ashleys, oldest granddaughter-hearing and a daughter-in-law-hoh, Fragmenter's wife)
 
Thank you. That means a lot. I just try to stay positive and be her biggest cheerleader. I think children should be given lots of support and encouragement. I want her to feel she can do anything. I will keep her grounded but at the same time let her spread her wings and fly too.
 
Hear Again said:
...

I hope DD will respond to my question about what she means by "almost hearing."
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I read DD's post that you are referring to and the phrase "almost hearing". I will venture to say I think she meant those with a CI(s) and come across "almost" a normal hearing person.
 
sr171soars said:
I read DD's post that you are referring to and the phrase "almost hearing". I will venture to say I think she meant those with a CI(s) and come across "almost" a normal hearing person.
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Thanks for offering an explanation. I know I've challenged DD alot lately, but I must say that I agree with her assessment in that regard. :)
 
sr117soars, you're absolutly 100% right.


but your posts on AD seem to come across as if you are discouraging parents or adults from getting CIs.
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No, not at all.......I really really think in quite a few cases, that CIs ROCK. :eek3: There are after all, about 20% of dhh folks who are right off the bat canidates and who don't benifit from hearing aids whatsoever. I totally support implantation in those cases! Also, in cases where there's recruitment or tinituas.
But since they've opened up canadicy to people who hear as well as 60% with an aid, I do think that people should really experiment with different technologies first, that's all. Especially in cases where they have quite a bit of residual hearing. I mean usually people don't go into an indepth explaination of their hearing loss when they post about their interest in CIs. I am not an audi, but I do know that response to hearing technololgy varies significently from person to person. Maybe experimenting with alternative technolgy might be just as good as a CI for some people. I definitly think that the CI is AWESOME for people who have poor speech reception with aids.......
But I also think that some people are really almost buying into the hype with them. I mean don't you remember how back when digital aids came out, people thought they were ALL that? There are still a lot of people who are hardcore analog users.The market still reflects that not everyone responds well to the same hearing technology.....that's really what I'm trying to get accross in my posts to people. Just seems like everyone's interpreting that as me being anti CI. I definitly think it's a GREAT thing..............for the right people.
 
deafdyke said:
sr117soars, you're absolutly 100% right.


No, not at all.......I really really think in quite a few cases, that CIs ROCK. :eek3: There are after all, about 20% of dhh folks who are right off the bat canidates and who don't benifit from hearing aids whatsoever. I totally support implantation in those cases! Also, in cases where there's recruitment or tinituas.
But since they've opened up canadicy to people who hear as well as 60% with an aid, I do think that people should really experiment with different technologies first, that's all. Especially in cases where they have quite a bit of residual hearing. I mean usually people don't go into an indepth explaination of their hearing loss when they post about their interest in CIs. I am not an audi, but I do know that response to hearing technololgy varies significently from person to person. Maybe experimenting with alternative technolgy might be just as good as a CI for some people. I definitly think that the CI is AWESOME for people who have poor speech reception with aids.......
But I also think that some people are really almost buying into the hype with them. I mean don't you remember how back when digital aids came out, people thought they were ALL that? There are still a lot of people who are hardcore analog users.The market still reflects that not everyone responds well to the same hearing technology.....that's really what I'm trying to get accross in my posts to people. Just seems like everyone's interpreting that as me being anti CI. I definitly think it's a GREAT thing..............for the right people.
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DD,

I can accept your reasoning, but again, when a person is evaluated for a CI, 99% of the time alternative options will be considered (stronger HAs, FM system) before a CI is recommended.

As for people not responding to the same hearing technology, the same could be said for HAs. If a child or adult has reached the point where they receive little or no benefit from HAs, they have nothing to lose by receiving a CI.

Prospective CI candidates and parents of deaf/severely hard of hearing children don't have time to worry about how well others do or don't do with an implant. The time to hear is *now* -- especially where infants and chidren are concerned. When an adult or the parent of a deaf/severely hard of hearing child opts for a CI, they are willing to accept whatever happens whether it means success or failure.

I remember how people raved over digital HAs. I'm afraid I fell for the sales pitch as well. LOL! As soon as I qualified for a new pair of HAs in 1995, I asked my audi if I could try digitals. While there are many people who love digitals, I was someone who was very disappointed with them so I went back to using my analogs.
 
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deafdyke said:
But since they've opened up canadicy to people who hear as well as 60% with an aid, I do think that people should really experiment with different technologies first, that's all. Especially in cases where they have quite a bit of residual hearing. I mean usually people don't go into an indepth explaination of their hearing loss when they post about their interest in CIs.
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People don't post about every detail of their hearing loss because it's irrelevant to this forum, for the most part.

That said, I'm going through the candidacy process now, and I'm curious as to where you got that 60% figure from. The audiologist who did my testing told me that the FDA guidelines say 30%, and that their threshold (the center's, that is, not the audi's) is 50%.

That number, however, is in a best-case scenario - no background noise (or no more than 5 dB, I can't recall which). So with the noise that is a part of every day life, comprehension can drop drastically, as you know well. The reason people with scores like these are able to be successful with spoken communication is lip reading and context; but obviously these have their associated problems, not least of which is fatigue.

The standards are looser than they once were because cochlear implants are improving such that people for whom a CI would once have been a step back are now able to benefit from one. Why resist it? The procedure is nowhere near as invasive as you might think (look at Lily's dad's thread on her recent implantation), costs are coming down (and in the long run, may be comparable to HAs), and there isn't much of a downside to giving it a shot. So if your resistance to CIs - your insistence on leaving them as a last resort - isn't motivated by anti-CI culture, then what is it motivated by?
 
ismi said:
That said, I'm going through the candidacy process now, and I'm curious as to where you got that 60% figure from. The audiologist who did my testing told me that the FDA guidelines say 30%, and that their threshold (the center's, that is, not the audi's) is 50%.QUOTE]

The criteria for CI candidacy was expanded in 1999. Medicare raised its percentage for aided speech discrimination from 30% or less to 40% or less last year.

With the exception of Medicare, speech discrimination scores (aided) can be as high as 60% in the better ear and 50% in the worse ear. If you are a Medicare recipient, speech discrimination scores (aided) cannot be higher than 40%.

CI criteria from one CI center to another may differ (for example, some CI centers may implant people with bilateral severe hearing loss while others may only implant those with severe-profound or profound loss), but generally, insurance companies base their approval on FDA guidelines.

Here are examples of the percentages required from several CI centers for candidacy:

Cochlear Implants

"2. You receive little or no useful benefit from hearing aids ( scoring 50 percent or less on
sentence recognition tests in the ear to be implanted and 60 percent or less in the non-implanted ear or bilaterally."

Cochlear Implants - Neurotology Chicago

"Score 50 percent or less on sentence recognition tests in the ear to be implanted and 60 percent or less in the non-implanted ear or bilaterally"

Candidacy Criteria

"Qualified candidates are those scoring, with a hearing aid, 50 percent or less on sentence recognition tests in the ear to be implanted and 60 percent or less in the non-implanted ear or bilaterally."

UC Irvine - Cochlear Implant Center

"Score 50 percent or less on sentence recognition tests in the ear to be implanted and 60 percent or less in the non-implanted ear or bilaterally."
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Thank you Hear Again for backing me up!
*high five* You rock! This is really where everyone got confused LOL.
As I have said, I'm not against them if speech perception is really pretty much uniformally poor. I mean someone who can only hear 40% with aids, upgrading to CI, is probaly like me changing from ITEs to BTEs. It's just.......60% just seems very high for a ceiling, that's all.
I do know about the screening process.....but I thought that they mostly used traditional hearing aids. As I've said, I know that hearing response is VERY indivdualistic. That leads me to wonder if there might be some cases,(especially in cases where they get quite a bit of benifit from traditional aids) where alternative hearing technology could benifit someone just as much as CI. I'm just wondering if they started pushing body worn aids again...........(and they ARE manufactured. They are still heavily used in Europe.......my friend from the Netherlands has a colored body worn for her son) if some of the people who get quite a bit of benifit from BTEs, might find body worns just as good as "upgrading" to a CI. I mean I know a girl my age,(we are 80's kids) who got NO benifit whatsoever from even body worn aids. She recently tried new digitals.........and has been getting quite a bit of speech perception from them! :eek: 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.
So if your resistance to CIs - your insistence on leaving them as a last resort - isn't motivated by anti-CI culture, then what is it motivated by?
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I'm not resistant to CI per se.........I think that they should be a viable option....but more after every possible avenue, including alternatives for borderlines/ get quite a lot of benifit has been exhausted.
I haven't been anti CI for quite a few years. For me my "last resort" stance, comes from the fact that it's still possible to "shop around" for an implant with various and sundry CI centers. If the CI centers had a strict universal uniform policy as to who gets implanted and who can't, then my opposition would go down quite a bit. Also, CIs are VERY expensive. They increase health care costs, and insurance costs and all sorts of costs. I also think there are some people who are a little "OMG...it's the latest TrEnDy GiZmo" Gotta have it..........no matter what"
 
ashleysmommy said:
Thank you. That means a lot. I just try to stay positive and be her biggest cheerleader. I think children should be given lots of support and encouragement. I want her to feel she can do anything. I will keep her grounded but at the same time let her spread her wings and fly too.
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Ashleysmommy, you oughta start a book of quotes! Especially for parents in need of encouragement, like those chicken soup for soul books!
 
I think children should be given lots of support and encouragement. I want her to feel she can do anything. I will keep her grounded but at the same time let her spread her wings and fly too.
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VERY healthy attitude.......I think that rocks! Too often parents of special needs kids REALLY shelter and encourage dependancy regarding their kids.
The best goal to shoot for is to really encourage independance in ALL areas.
One of my friends who has CP, is a nice kid.......but he's so sheltered and helpless.......like when we would go out, to the mall, he'd make me push his chair like I was his PCA or something.


Especially for parents in need of encouragement, like those chicken soup for soul books!
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Or maybe more like..........not as sappy as chicken soup for the soul. Chicken Soup for the soul is almost sugary enough to send a diabetic into insulian shock LOL. Maybe more "good advice to remember" sort of inspirational.
 
Thanks. I don't want Ashley to feel like she is helpless. I want her to be able to do things on her own. That is all part of growing up. She is only 16 months old and has more Independence than my 24 year old brother. I have really thought about writing Ashley's story. I think maybe what I could say might help someone else going through some of the same things.
 
ashleysmommy said:
Thanks. I don't want Ashley to feel like she is helpless. I want her to be able to do things on her own. That is all part of growing up. She is only 16 months old and has more Independence than my 24 year old brother. I have really thought about writing Ashley's story. I think maybe what I could say might help someone else going through some of the same things.
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I think that's a great idea! By the way, I maintain part of a website that contains information for deafblind CI users, parents and professionals. If you'd like to share Ashley's experiences with bilateral CIs, your story would be a wonderful addition to the website!

For more information, visit:

Welcome to CI Hear 's Deafblind Information Page

Incidentally, you can also find my CI journal (link entitled "New Beginnings") as well as the short stories I wrote about my activation day ("Lisa's Activation Day"), first day of hearing with a CI ("Lisa's First Day of Sound") and my experiences with bilateral CI surgery ("Lisa Has Bilateral Surgery").
 
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