Bilateral Same Day Surgery

I really never thought of that. Thanks. I will look into it. Every little bit helps. She will need lots of that I am sure. We have our work cut out for us but I am up for the challenge.
 
deafdyke said:
Just b/c someone with a severe-profound loss can benifit significently (like hear at hoh levels) from digital aids, (and there is a percentage of severe-profounders who can signficently benifit from hearing aids) it doesn't mean that ALL severe profounders can benifit simalirly. On my hearing aid lists, I always advise people to experiment. What works for one person may not produce the same results for another.
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Conversely, just because one child or adult does not benefit from a CI doesn't mean the same is true for *all* CI users.

Besides, experimenting with different HAs can be a frustrating and exhausting proposition. When does the "experimentation" end? When does a person begin to accept the reality of their hearing loss/deafness? Eventually there comes a point where a person needs to accept the fact that they no longer benefit from HAs and look for other alternatives such as sign or a CI.
 
deafdyke said:
Guys, just b/c I am not all "rah rah rah" about implants, I'm suddenly anti CI? Oh lord........I am very much like this for other things like analog vs. digital aids. The thing is, response to different hearing stimulation technologies is VERY indivdual. Just b/c someone with a severe-profound loss can benifit significently (like hear at hoh levels) from digital aids, (and there is a percentage of severe-profounders who can signficently benifit from hearing aids) it doesn't mean that ALL severe profounders can benifit simalirly. On my hearing aid lists, I always advise people to experiment. What works for one person may not produce the same results for another.
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While you may not be anti CI, your questions to some CI'ers is very annoying; most CI'ers have already experimented with various hearing aids and listening devices before they get an operation. It's almost as if we're undergoing an inquistion. We have to undergo a wide variety of tests to see if we're suitable candidates. Most docs are not going to operate on us on our say so. I would think most of us are aware of the risks and that the outcome may not be what we'd hope it would be.

I asked my audi about digital aids and here is what she has to say:

"With your degree of hearing loss, there is no hearing aid that would provide you with enough amplification of sound to make it meaningful to you... Once you have such a significant level of hearing loss, the hair cells are damaged in the ear and the amplification becomes distorted. All sounds become distorted and the message is lost to you... Just because a hearing aid is digital and not analog, it does not make the message more clear for a patient with severe to profound hearing loss like you have."

I'm skeptical of any devices that promises to help me hear better because I've been disappointed in the past. However, I have reason to think CI could help me - provided everything goes right.

Your advice on hearing aids would be most useful to those who can benefit from them.
deafdyke said:
That's good that she does some signing. And that's also good that she's seeing an AVT......if there's not a local oral school, AVT is probaly the best bet for having a dhh kid develop oral skills. Most "general" speech therapists
tend to have very basic training in teaching dhh kids.
Have you thought about getting a therapist/teacher for working on Sign skills? They can teach your daughter Visual Frame Sign and Tactile Sign, as well as giving your daughter expressive language skills. Even if she can hear at "hoh" levels with CI, she might have spoken expressive language issues. (called apraxia) It's very common in kids who are just dhh.....and her multiple issues, might add to the risk.
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That does sound like excellent advice.
 
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We went through the whole ha saga. It was part of the qualification process for us. It helped me to be sure that Ci was the right step to take. Once you have the surgery you can't go back. I wanted to be 110% sure there was no other option for her. I am now more confident than ever because we did experiment with the ha.
 
Well said Skeptic and Ashleys mommy. There are a couple of other things that must be taken into consideration. While it is good to experiment with options, you must also take into consideration trying to keep your child from falling farther and farther behind. Some say not to use sign. They say you must force the child to listen and speak. Well, we all know a long term side effect may be that the child falls waaay behind on everything else in the world. If you keep experimenting with different HAs, you run an increased risk of the child falling behind. While I know this is not accurate for some kids, it is a possibilty. SO you could waste years trying different HAs to only come to the conclusion audis have told you...... get the CI, the earlier the better.
Also, as said above, just because someone wants a CI for themself or thei rchild, it does not mean they will get it. Audis and doctors do not make that decision lightly.
 
Lillys dad said:
Well said Skeptic and Ashleys mommy. There are a couple of other things that must be taken into consideration. While it is good to experiment with options, you must also take into consideration trying to keep your child from falling farther and farther behind. Some say not to use sign. They say you must force the child to listen and speak. Well, we all know a long term side effect may be that the child falls waaay behind on everything else in the world. If you keep experimenting with different HAs, you run an increased risk of the child falling behind. While I know this is not accurate for some kids, it is a possibilty. SO you could waste years trying different HAs to only come to the conclusion audis have told you...... get the CI, the earlier the better.
Also, as said above, just because someone wants a CI for themself or thei rchild, it does not mean they will get it. Audis and doctors do not make that decision lightly.
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I totally agree with this post.
Research has show now that "getting behind" actually allready starts after the first year. The results will still be very good, but it has been shown that implantation before 2 is far better compared to after 3 years of age.
I have a feeling that the obligatory "wearing HA's" will be removed, since in a way it is not beneficial for the child and will cost society more in the long run.

So, thinking like DeafDyke, trying all options again, again and again, not making a decision for CI, will possibly result in finally getting CI with an outcome that is below the possible outcome compared to CI straight away....
Sometimes it's good to let the experts think!!
 
I would have not let the experimental phase go on very long. I was not happy with her Ha's the week she got them. After a month I was was sure she did not get anything from them. I unfortunately had to do what was required by the doctors and insurance.
 
A lot of insurance companies also require the ha first. They will sometimes fight to pay for Ci surgery if you have not had them first. The doctor told us there was a min. of 3 months with the aids to make sure she did not get any help with them. With her being so young it is hard to tell what she can and can not hear without ABR. That is why they say months I guess. Her hearing could have changed during that time. I am just glad we have gotten to the point now to do something and not be waiting for her to fall more behind.
 
Conversely, just because one child or adult does not benefit from a CI doesn't mean the same is true for *all* CI users.

Besides, experimenting with different HAs can be a frustrating and exhausting proposition. When does the "experimentation" end? When does a person begin to accept the reality of their hearing loss/deafness? Eventually there comes a point where a person needs to accept the fact that they no longer benefit from HAs and look for other alternatives such as sign or a CI.
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Well, according to Auditory-Verbal Inc. only about 20% of deaf kids can't benifit from hearing aids. If it's totally 100% clear that a deaf kid does not benifit from hearing aids....like ANY type of hearing aids, I do think that implantation should be a clear shot for that population. When I voice doubts about implantation, I am simply voicing doubts about the population for whom implantation is really kind of ambigious. Like for example I know of someone who can hear 80% with hearing aids, who has been told he's a possible canidate! I know of kids who could hear about 65% with aids (10% without) who were still eligable to be implanted.
However if someone has a very poor word response, then YES........they should get implanted.....I'm NOT anti-low response implantation.
I definitly think that ambigious canidates (like those who can hear around 45% and up with hearing aids) should go through at least five "trials" of hearing aids, just to be absolutly 100% sure that they've exhausted all possible routes. It does seem in some quarters that the CI has been almost seen as a TrEnDy new "gotta have" gadget. Not saying that ANYONE here is like that. But there do seem to be people out there who are kind of "trend whore" about the CI. I am NOT criticizing ANYONE who opts for CI who has a poor response to hearing aids........(poor response is about <45% of speech) I'm just saying that maybe it might be better for the ambigious canidates to be required to first experiment with a variety of hearing aids, including non traditionals. If they don't respond well, then YES! The ambigies SHOULD be implanted..........but I just think that hearing response is just so indivdual, that it's worth it for the ambigious canidates to really experiment, and make sure that a simple switch of hearing aids/hardware/ change of earmold/tubing might not increase the percentage of words that they hear. I mean I do think that there are probaly some ambigious canidates for whom the CI is a legitimate good choice......but I also think that it's worth it for ambigie (not the ones who CLEARLY don't benifit! adults and older kids to experiment with the different options out there.
Hear Again, I have never said that there's a significent population for whom the CI does not work. Just have said that the benifit from CI has been VERY VERY variable that's all. Some people are functionally hoh, but others only get enviromental noise benifit. And of course, every other hearing status in between.
 
I hope that everyone that is considering or has decided to go with CI does not let some of these posts discourage you. As long as you know you did or are doing the right thing for yourself or your child then you have nothing to be discouraged about. I know I have weighed all the possible treatments for my daughter and after MONTHS of trying different things I came to the decision that going with Ci would be her best chance at hearing. I know it is a chance she will not get much but there is the chance she will. She can not be worse off than she is not hearing at all. I have only learned from the things that are posted. It has also made me more sure I am doing the right thing. There will always be a difference of opinion. Everyone is entitled to their own. It is up to us to make up our own minds and do the right thing for us and our families.
 
Well said!!!!!!!!
There are only two people that you have to answer to about implanting your child. 1 your child. 2 you.


And Greema, you almost made me spit my coffee on my monitor with the littel snoring guys!
 
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