When CI won't work.

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bchamberlin

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My little guy is just over 2 years old and while he's a candidate for implants, his mother and I are very cautious about going forward with the process. Some people have been shocked to hear this but we've been told that CI's might not be that effective because of his underdeveloped cochlea. His inner ear anatomy is also a little abormal which would make the process that much more complicated. Considering the limted benefit of the CI's that's expected, we're at a cross roads, not knowing if the reward is worth the risk.

Has anyone else found themsleves in this situation?

Thanks,
Brian
 
Does your son have Mondini dysplasia, enlarged vestibular aqueducts, Michel deformity or something else entirely?
The best thing to do is ask the surgeon EXACTLY what is the type and degree of malformation your son has.
There are cases of successful CI surgeries in kids who only have a "common cavity", just a simple oval, instead of the complex 2.5 turn structure of the normal cochlea. And the literature indicates that these kids don't do well with hearing aids but some do well with cochlear implants.
Of course, there are cases of people who have anatomically normal cochlae who don't do well with CIs.

Kids with cochlear malformations tend to progress more slowly than kids without cochlear abnormalities BUT many catch up within 2 years and they aren't that far behind other CI recipients.
http://www.phonakpro.com/content/da...ul_2011/13_Gonca_Sennaroglu_Istanbul_2011.pdf


If your son does not have a cochlea or if he is missing the 8th cranial nerve (hearing nerve) then an auditory brainstem implant can be done. I am not very familiar with these but I do know this surgery requires access to the brainstem. It bypasses the ear, cochlea, and cochlear nerve and directly stimulates the auditory center of the brainstem.

The best resource is your surgeon. If your surgeon is not familiar with cochlear malformations, find another one who is familiar.

In the mean time, use any method that works for your son and your family to get as much language into your little dude as possible.
 
Well what exactly does "limited benefit" mean anyway? Like are we talking about hearing like a kid with unaided severe hearing loss? Meaning they can get some sounds and even word comprehension, but it's low?
It's good you got a realistic view of the CI....there are kids who are very HOH functioning with it but there are still a lot who cannot benefit as much from it.
I'm pro full toolbox. It might be a good idea.
 
full toolbox means kid can learn how to sign (ASL, and learn how to speak/listen with hearing aids or Cochlear implants. Full toolbox would be beneficial to kids since kids can socilize with other kids who are the same as this kid than all alone deaf kid along with the rest of hearing kids.
 
I agree on the full toolbox approach. I think all options should be available, but a child should have a fully accessible language. CIs do not make for perfect hearing, quite a ways from it actually. ASL should be the first language, once a grasp is made with that, then look into other languages. There is no down side to a multilingual child, or adult. Start with ASL, hearing aids...

Does your son get any benefit from hearing aids? With he limited benefit from CI, and knowing it is surgery, that can cause issues with balance and so forth, if it were me, I would allow your son to make the decision to try at a later date. Stick with what is working... CIs will always give limited benefits... but limiting the limited...
 
Brian: Your first step should be a discussion with the doctor re: his Cochlea. Suitable for implantation? A question of fact and go from there.
As I understand the matter-early Implantation "helps one to speak"- Important in future life?

Good luck in getting answers for your son.
 
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