Implanted but anti-CI?

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faire_jour

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I am a hearing mother who uses ASL with my Deaf daughter. We are considering an implant for her. I have read all the pro and cons and heard from people who lobe their implants, now I want to hear the other side. I want to hear why you took your implant off or why you were ex-planted. I especially want to hear from people who were implanted as children.

I understand that this will not be a two-sided, fair thread, but that is what I want.
 
Good thread but replies to it will probably mostly hearsay posts ie My friend's sister told me that etc etc.


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TechBill said:
Good thread but replies to it will probably mostly hearsay posts ie My friend's sister told me that etc etc.


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Unless it's a post from Smithr. I do know of a few posters here who stopped wearing CIs after a while. If they're reading this thread, I'm sure they'll post here.
 
I have a deaf friend who has been implanted twice in 1 ear (original implant quit working, so was reimplanted, her parents wanted the CI for her). 2nd implant didn't work either, and she has facial paralysis on 1 side of her face. Of course, this was when CI's were still fairly new and experimental and surgeons didn't know everything there were to know about CI's and such. She's happy now to be completely deaf.
 
Your daughter's ENT doctor should have this particular information for you. In my experience, meningitis and functional ear anatomy to successfully operate the implant were top concerns of mine.
 
SCBassist said:
Your daughter's ENT doctor should have this particular information for you.
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My daughter's ENT isn't Deaf and doesn't have an implant, so he doesn't have the kind of information I need. I want personal experiences and the perspective of those implanted.
 
faire_jour said:
My daughter's ENT isn't Deaf and doesn't have an implant, so he doesn't have the kind of information I need. I want personal experiences and the perspective of those implanted.
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OK, that's not what I meant. Her doctor should have some insight from administering other's CI experiences which he/she MAY pass on to you. The negative aspects are pretty null, as you can see, the majority have a successful experience with a CI. But any possible disadvantages should be pointed out by her doctor. Everyone is different.
 
From memory in the past on this forum:

http://www.alldeaf.com/hearing-aids-cochlear-implants/38326-i-am-mad-i-have-ci-sigh.html

I think just like with hearing aids there are going to be people who don't want to wear a CI when they get to a certain stage. Many others however find their CI useful and will continue wearing it. It's hard to know how it will turn out for your daughter but I understand your need to at least educate yourself.

I think your daughter is about 5, right? I think the best thing to do since she is older is to involve her with the decision to hand and if she decides later on that it's not for her then to support her again in that regard to switching it off or whatever.

There was a British study last year that looked at the opinions of about 29 teenagers who had been implanted as children. Here is the thread where we discussed it.

http://www.alldeaf.com/hearing-aids-cochlear-implants/41106-research-about-teenagers-ci.html
 
R2D2, great post! In addition to what R2D2 said, I think that since your child is older, she should also help make the decision. Like just ask her if she would want to hear better then with hearing aids. Are you guys still investigating it? Is she a borderline canidate?
The negative aspects are pretty null, as you can see, the majority have a successful experience with a CI.
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In addition, "sucess" varies tremendously from person to person. One person may only be able to hear enviromental sounds and another person might be functionally hoh, as well as every level in between.
 
We are talking to her about it a lot. I have shown her pictures of implants, I have explained that it will be like a hearing aid but inside her head. I have asked her if she wants to hear better and she tells me yes. She has a friend in her class with a CI so that is helpful. I have also shown her little animations that show that the implant goes under her skin, and a few (tame) pictures of healing incisions. I explained that we would go to the hosptial and they would put her to sleep, and when she woke up it would be inside. We have talked about the fact that it will hurt, but that we will have medicine to help with it.
I'm introducing the idea to her, but I don't want to overhelm her.
 
Excellent!!!! How good is her hearing with HA? Does she have a worse ear? Have you guys thought of experimenting a bit with other options first? Not being anti-CI, BUT I gotta say that sometimes it might be worth it to see if a stronger aid (ie the Oticon Sumo, or even a body worn aid) might help just as much.
 
faire_jour said:
We are talking to her about it a lot. I have shown her pictures of implants, I have explained that it will be like a hearing aid but inside her head. I have asked her if she wants to hear better and she tells me yes. She has a friend in her class with a CI so that is helpful. I have also shown her little animations that show that the implant goes under her skin, and a few (tame) pictures of healing incisions. I explained that we would go to the hosptial and they would put her to sleep, and when she woke up it would be inside. We have talked about the fact that it will hurt, but that we will have medicine to help with it.
I'm introducing the idea to her, but I don't want to overhelm her.
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Good thread, and great question...
Hope you get some first-hand answers.

I think it's wonderful that you are discussing it with her, but basing a decision on her opinion sounds totally wrong to me. A 5-year old is not capable of making a decision like that. The decision is completely yours.
Any doubts you might have should be dealt by you. You cannot get the answers from you daughter.

And - btw... be careful with the phrase "put to sleep".... the same is sometimes used for "killing pets" and a 5-year old might totally misinterpret the meaning....
 
You might want to check this thread out:

http://www.alldeaf.com/hearing-aids-cochlear-implants/50610-tired-hearing-after-15-years.html

Also, if you utilize the other link provided by R2D2, be sure to access the actual research report, and read the findings, as well as the methodology.

I don't think you need to worry too much about telling her she will be "put to sleep." You also told her that she will "wake up" with the implant inside.

Conversely, if a 5 year old is capable of deciding whether she does or does not need sign language,(as has been claimed) she is also capable of providing input regarding an implant. Keep doing what you are doing. Stay involved, keep your child involved, and keep seeking information from those who have been there.
 
I don't have CI, but I do have a lot of friends who have and had CI.

Some of them got CI, but stopped wearing them for the following reasons...

- overwhelming (born deaf, never experienced sounds)
- fragile (rough athlete; football, wrestling, mud tug, dodgeball, etc)
- harassment (by anti-CI deafies)
- lazy (replace battery, putting it on, putting it away, caring for it)
- quick taste (covered by insurance; nothing to lose)
 
Like I mentioned earlier .. most replies are Hearsay.

Do you all realized that the thread starter are asking for whomever "experienced this" or "been thur it themseleves" to share it with them.

Not "My friend" "My aunt" "My buddy"



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jillio said:
You might want to check this thread out:

http://www.alldeaf.com/hearing-aids-cochlear-implants/50610-tired-hearing-after-15-years.html

Also, if you utilize the other link provided by R2D2, be sure to access the actual research report, and read the findings, as well as the methodology.

I don't think you need to worry too much about telling her she will be "put to sleep." You also told her that she will "wake up" with the implant inside.

Conversely, if a 5 year old is capable of deciding whether she does or does not need sign language,(as has been claimed) she is also capable of providing input regarding an implant. Keep doing what you are doing. Stay involved, keep your child involved, and keep seeking information from those who have been there.
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:gpost:

I believe that even a small child is capable of being involved in the decision process. Whether that's to get the implant or NOT get the implant. I also think it's the parents duty to search for, and look at, all the information that is provided. You owe it to your child to be as informed as possible before making a decision that will undoubtely change their lives forever.
 
Oceanbreeze said:
:gpost:

I believe that even a small child is capable of being involved in the decision process. Whether that's to get the implant or NOT get the implant. I also think it's the parents duty to search for, and look at, all the information that is provided. You owe it to your child to be as informed as possible before making a decision that will undoubtely change their lives forever.
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Welcome back!

I agree with you. Even though a small child may not understand the long reaching implications of a decision it can help a lot if they feel involved. I remember Lilysdad (who no longer posts on AD) discussing with his two year old daughter if she wanted to go bilateral and she made it clear that she did. She may not understand all the ins and outs of CIs but it probably helped her with going through the surgery knowing exactly what was being achieved.
 
basing a decision on her opinion sounds totally wrong to me. A 5-year old is not capable of making a decision like that. The decision is completely yours
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. Cloggy, here's how I see things. If fair_jour's daughter needed an upgrade to better hearing aids, the audi and parent would help involve her , in the decision making process about selecting a new aid. (ie asking for feedback on how sounds sound etc) I think that older kids should help decide. THEY are the ones who are going to deal with that particular device.
 
R2D2 said:
Welcome back!

I agree with you. Even though a small child may not understand the long reaching implications of a decision it can help a lot if they feel involved. I remember Lilysdad (who no longer posts on AD) discussing with his two year old daughter if she wanted to go bilateral and she made it clear that she did. She may not understand all the ins and outs of CIs but it probably helped her with going through the surgery knowing exactly what was being achieved.
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Thank you!

Agreed. You can bring it down to their level, and they WILL understand. :)

Offtopic:

I see LilysDad is no longer here. Sad. I liked him. :(
 
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