faire_jour

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.

Deafness

__________________
This advertising will not be shown in this way to registered members.
Register your free account today and become a member on AllDeaf.com

TechBill

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


.

deafskeptic

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.

__________________
Left ear implanted with Med-El on April 24 2007.
Activated on May 9th.

cdmeggers

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.

__________________
My Ear Blog

SCBassist

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.

__________________

faire_jour

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.

SCBassist

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.

__________________

R2D2

From memory in the past on this forum:

http://www.alldeaf.com/hearing-aids-...e-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-...nagers-ci.html

__________________


Left ear implanted 9th June 2006 Activated 29th June 2006
Right ear implanted 31st August 2007 Activated 18th September Both Nucleus Freedom

Cochlear implant myths

Drew's Dad

Uh oh, you called it a "study" again.

__________________
Drew received simultaneous, bilateral cochlear implants at 8 months of age. Read his story at http://TurnOnMyEars.blogspot.com

deafdyke

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?
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.

faire_jour

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.

deafdyke

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.

Cloggy

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....

__________________

jillio

You might want to check this thread out:

http://www.alldeaf.com/hearing-aids-...-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.

VamPyroX

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)

__________________
Check out my city... CLICK HERE!
(If you already visited yesterday, visit again today!)

TechBill

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"



.

Oceanbreeze

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.

__________________

R2D2

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.

__________________


Left ear implanted 9th June 2006 Activated 29th June 2006
Right ear implanted 31st August 2007 Activated 18th September Both Nucleus Freedom

Cochlear implant myths

deafdyke

. 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.

Oceanbreeze

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.

__________________

Oceanbreeze

With all due respect, I don't think this parent is going to let the decision solely rest with her five year old. At the same time, if the child doesn't want the CI, that should be taken into consideration; as should a desire to have one. A child of her age is perfectly capable of voicing an opinion on this.

After all, it is the CHILD who will be wearing the CI; not the parent. If the child is old enough to articulate how they feel, I feel it is a parent's duty to include that child in the decision making process.

And, as for the phrasing of "being put to sleep". That's no big deal, Cloggy. A child doesn't understand any euphemisms of euthanasia. They would only understand it to mean what the parent intends for it to mean for them.

__________________

deafdyke

Thank you Ocean Breeze, and everyone else!

MomToDeafChild

There just aren't that many adults out there who were implanted as young children to be able to report on this. The oldest of the 'implanted as young child' implantees (those implanted before the age of 4) are only college age now.

In my experience, it always seems like the ones I hear about who have decided not to wear their implants anymore (and frankly, these are all from hearsay since everyone I personally know with an implant is happy with it) were not implanted as young children, but as young adults, so of course their experiences will be different. These are people who have the experience of a before and after, and maybe the after wasn't all they were hoping for.

My daughter is 8 and loves her implant. Even when she had an implant failure last year and was without sound for 5 months she wore her processor EVERY DAY, all day. It is very much a part of her. I honestly could not imagine her ever taking it off and saying she wanted nothing to do with it ever again, since it IS so much a part of her life.

I think once the implanted kids of today grow up and can report for themselves, you will hear a lot less about people not wanting to wear their implants...

jillio

That is certainly a possibility. However, it is just as possible that we will hear of more who choose not to wear their implants. It could play out either way. I am quite certain that we will certainly continue to hear of numerous childhood implantees who opt to learn sign after being restricted to an oral only environment and relate stories of "coming home" to the deaf community.

rick48