I want to hear opinions of those who have had the CI. Is there anyone it didn't work for or who regrets having it done? I am a candidate and want all the info and opinions I can get before this life changing decision is made. I want opinions of adults who have it. Or those with children who didn't benefit from it. Thanks to anyone who posts!
Anyone who didn't benefit from CI or don't like it?
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Define, it not working. Total and complete "no access to sound" is pretty rare, from what I understand. That said, access to sound from a CI varies signficently, depending on things like cause of loss, history of loss, etc etc.
I believe the gross majority of people do get at least enviromental sounds. Care to fill us in with your history? Oh, and if you're doing it b/c of tintintuas or recruitment, definitly throw away your aids and go for it!
I believe the gross majority of people do get at least enviromental sounds. Care to fill us in with your history? Oh, and if you're doing it b/c of tintintuas or recruitment, definitly throw away your aids and go for it!
Just deaf
I want to know all I can about it before I make a decision. I am 37 and started having hearing problems about 15 years ago. I do remember having some problems in the 5th grade but, didn't go to doctor. My ENT has pretty much decided it is hereditary. My 4 year old daughter is HOH and is supposed to wear aids but, we are having problems getting her to wear them. Anyway, I lost hearing in right ear first and sept 2006 I lost hearing in left. I do hear some sounds. Fire alarms, music if turned up max on headphones. I don't know sign but, want to learn. I also want my family to learn. All I know is that the doctor said I would be a good candidate for CI and I want to hear but, something about this surgery is scary. And once one has it done, and it don't work or don't benefit from it...are you stuck with this thing in your head?
Can it be removed? I have a while to make the decision because our insurance is still deciding wether they will pay.
So, in the mean time I am collecting info..good and bad. My family says go for it but, I'm a scaredy-cat
Any advice?
I want to know all I can about it before I make a decision. I am 37 and started having hearing problems about 15 years ago. I do remember having some problems in the 5th grade but, didn't go to doctor. My ENT has pretty much decided it is hereditary. My 4 year old daughter is HOH and is supposed to wear aids but, we are having problems getting her to wear them. Anyway, I lost hearing in right ear first and sept 2006 I lost hearing in left. I do hear some sounds. Fire alarms, music if turned up max on headphones. I don't know sign but, want to learn. I also want my family to learn. All I know is that the doctor said I would be a good candidate for CI and I want to hear but, something about this surgery is scary. And once one has it done, and it don't work or don't benefit from it...are you stuck with this thing in your head?
Can it be removed? I have a while to make the decision because our insurance is still deciding wether they will pay. So, in the mean time I am collecting info..good and bad. My family says go for it but, I'm a scaredy-cat Any advice?
sr171soars
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Do your research here and elsewhere. There are a pletoria of threads on AD that can assist you in seeing the pros and cons of having a CI. We all can give you advice but ultimately you will have to decide what is right for you. It may be or may not be the right choice.
I had mine since March of '05 (yep just about two years now and I was 47 at the time). I absolutely love what it does for me. I have been HOH all of my life and finally my hearing really started going south. I had to make a choice about my options and in a long way winding way I ended up looking at CIs. I don't sign and I have been in the hearing world so long that I was in effect one of them. The choice became easy for me after some research and so I went ahead and did it. I was one of those "perfect" candidates and it turned out the same with understanding speech right off the bat and understanding most environmental noises too. Yes, I had to get used to hearing with it but it wasn't bad at all. Not everybody will get the same kind of running start as I did so beware and listen to what they say how you will probably do. They usually are pretty much on the mark.
As far as your questions go...
1) If it doesn't work due to device failure, they will do what they have to do to get it working...even replacing it if necessary and they have done that before.
2) If it is because it just didn't work and the device is not the problem, then yea you are sort of "stuck" with it in your head. If you can afford it, you can get it removed. I don't think it would be prohibitedly expensive...as all they gotta do is remove it carefully and stitch you back up. Not removing it shouldn't be bothersome either but there are some people (very few) that have done that. In fact, there is a poster in here that either had it done just recently or will do it very shortly (long story but the gist of it what that it had a very unusual and negative impact on him - very rare).
Again, check the older threads as there is a wealth of information to assist you. Best of success in your endeavors.
I had mine since March of '05 (yep just about two years now and I was 47 at the time). I absolutely love what it does for me. I have been HOH all of my life and finally my hearing really started going south. I had to make a choice about my options and in a long way winding way I ended up looking at CIs. I don't sign and I have been in the hearing world so long that I was in effect one of them. The choice became easy for me after some research and so I went ahead and did it. I was one of those "perfect" candidates and it turned out the same with understanding speech right off the bat and understanding most environmental noises too. Yes, I had to get used to hearing with it but it wasn't bad at all. Not everybody will get the same kind of running start as I did so beware and listen to what they say how you will probably do. They usually are pretty much on the mark.
As far as your questions go...
1) If it doesn't work due to device failure, they will do what they have to do to get it working...even replacing it if necessary and they have done that before.
2) If it is because it just didn't work and the device is not the problem, then yea you are sort of "stuck" with it in your head. If you can afford it, you can get it removed. I don't think it would be prohibitedly expensive...as all they gotta do is remove it carefully and stitch you back up. Not removing it shouldn't be bothersome either but there are some people (very few) that have done that. In fact, there is a poster in here that either had it done just recently or will do it very shortly (long story but the gist of it what that it had a very unusual and negative impact on him - very rare).
Again, check the older threads as there is a wealth of information to assist you. Best of success in your endeavors.
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U said it is very rare for a CI to have a negative impact on the candidate? What is your definition of rare? The reason I am asking is since I am very involved in deaf education and with the deaf community, I have met just about as many people who had bad experiences with their CIs just as many people who had a good experience with their CIs.
What is your source that this is rare and what is the actual percentage that defines "rare"? To me, it is just as common as successful CIs from my personal experience. Maybe your definition of rare is different from mine?
The cost of anesthetization is quite high - I think it accounts for the bulk of the cost of most surgeries. Simple ones, anyway. Not that expensive to the individual if it's covered by insurance, but I don't think implant removal is covered.
As you say, though, most people would just leave it in.
sr171soars
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I meant in terms of medical problems where you need to remove it. Not the success or non success of a CI where leaving it in becomes debatable. The poster I mentioned had all kinds of problems physically (headaches and more) and it apparently warranted removal.
What you speak of is those who didn't do well with them...correct? That is a whole different kettle of fish. Just because they didn't do well with them generally doesn't require removal. Well, maybe I need to ask what you meant by bad experences to make sure we are on the same page.
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Ohh ok thanks for clarifying. yes, we r on the same page. U r right, medical problems severe enough to warrant the removal of the CI is rare. I haven't met a CI user having any medical problems caused by their CIs.
Smile
sr171soars...Thanks for the input. There is so many things to research here at AD that I thought it might be easier to post a thread and get info that way. I still look through them though. I am new and am still trying to figure everything out. One question though...what is a cyborg? Also, does any of the preop procedures hurt? I hate needles! How long does preop testing take before you actually get your op date?
sr171soars
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I understand where you are coming from when it comes to posting a thread instead of going through "mountains" of old threads...
A Cyborg means a cybernetic organism. In short, this definition suffices "The cyborg is often seen today merely as an organism that has enhanced abilities due to technology". See Wiki for more info. Of course, we don't have enhanced hearing to the point that it is better than regular hearing people. It is just a moniker by which myself and others call themselves after getting a CI.
The only pre-op procedure that "hurts" is a blood test and that should be it. They typically schedule them about seven to five days prior to surgery.
On the other hand, the surgery is supposed to be very "not too big a deal" It's not a complex surgery. If you're really not anxious for CI,(although it does sound like you're a pretty prime canidate) you could ask your audi if they think it might be worth it to experiment with things like more powerful hearing aids or high frequncy transponder things.
One way you could learn Sign, is by havign your daughter get services from a school for the Deaf....maybe you could even send her to the Deaf school for preschool for a couple of days a week. Here are the sites for the Deaf Schools in Tennesse: Tennessee School for the Deaf, and West Tennessee School for the Deaf
Also this site might be of help! League for the Deaf & Hard of Hearing
There's also the American Society for Deaf Children, which is a national org) American Society for Deaf Children and Hands and Voices: Hands & Voices (info about oral training and things, but not as biased as AG Bell, which I don't reccomend at all!)
Check out TAD too! Home of Tennessee Association of the Deaf
Oh and here is an organization for you: ALDA Inc. Home page - Information and support for those with hearing loss.
You might want to try SHHH as well. There's a lot of stuff about CIs, and lots of older people too: Hearing Loss Association of America
deafdyke... thanks so much for the info! I will definitely look into those. I just wanted to mention that I am from Kentucky. Do you know of some that are closer to me? I know about Danville School for the Deaf in Ky but, it is for children. I don't know if my daughters hearing loss is enough for me to send her there. Hers is mild, enough to cause her speech problems; what do you think? Don't get me wrong...I would be excited to get CI...I am just looking into to everything first before I get my hopes up. Thanks again!
Lillys dad
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Shel, I have a question for you. You use the term that the CI is a failure. When you use that term what exactly are you referring to as a failure? Is it medical compications as discussed above? Or is itmore along the lines of kids that got a CI and it just didnt work out for them? In other words, woulod you consider a CI kid that cannot get effective use of teh CI a failure? If so, I would disagree. I was thinking about this the other day when I was talking to a parent of a newly diagnosed infant. I was explaing the tremendous amount of work that goes into speech therapy and focused play that is required for a child to succeed. If the parents, or the child do not do the necessary work, is that a CI failing, or the person/family failing? If a family or kid does not do the follow up work, you cannot say the CI is a failure. If the kid or family does not put forth the effort for the CI and the user to succeed, then they failed the person, not the CI
Lillies dad...the girl is very beautiful! I am new and I wanted to know if that is a bandage from the surgery? How long did she have to wear it? I figure if a child can go through this surely me being an adult can, right?
I agree with your statement that it's something that has to be worked with before being called a failure. I am ready for that! Hopefully I'll know soon if I can get CI.
I agree with your statement that it's something that has to be worked with before being called a failure. I am ready for that! Hopefully I'll know soon if I can get CI.
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Where did I say that the child is a failure cuz he/she didnt benefit from the CI? If I said that, then I must have typed it out wrong? Never I would call a child a failure just because he/she didnt benefit from the CI.
I dont recall posting any posts saying the CI is a failure but if I did then I meant that the child didnt benefit from the CI for unknown reasons. I have known families who have put a lot of hours into speech therapy and exposed their child to oral only approaches but by the time the child entered school, they still havent picked up the naunces of spoken language so the parents needed to change their approaches to expose their children to ASL. My problem with that is that by the time these children are exposed to sign language, they are so delayed in language and they have to learn ASL and learn how to read and write in English at the same time. That is what I am referring to.
I have a friend who had a CI about 5 years ago and a couple of years ago, she stopped wearing it. I asked her why and she said that it didnt work well for her. Did the CI fail? I dont know but according to her it failed for her. Everyone is different.
d'oh! For some reason I thought you were from Tennesse.
LOL. You know its too bad the Deaf school doesn't serve as a regional service center. Like at Perkins School for the Blind, there are programs specificly for senoir citizens and adventuously blinded people.
I was looking at the KSD site, and they don't mention any minimum loss requirments to go to the school. I totally would. Your daughter would learn sign, from native signers, and in turn your entire family could pick it up. They also offer ASL classes for the whole family. Might be a really cool opertunity for your daughter! Also, she'd be able to get services and things specificly for dhh kids, without fighting for it. One problem about mainstreaming is that they tend not to really know how to educate dhh kids. Oh and in addition, the audis at the schools for the Deaf, tend to be really good (ie not Beltone/Miricle Ear) You might even be able to go there for Mappings and things!
You're doing the right thing, investigating ALL the options. It does sound like you'd be a prime canidate for it.
Lillys dad
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When I say the child failed the CI, I am not trying to imply that the kid is a failure, I am saying that there are some (how many, we dont know) that got the CI, and never did the required work to be successful with the CI. Even when referring to individuals that did that, I am not calling THEM a failure, I am sayint that they failed to do the necessary work. Thats all.
I am very aware that soem people, no matter what approaches they try, will not, and cannot successfully use the CI. I knwo a little girl very well that that may be the case. Everyoen is signing and speaking with her. Communication is the most important aspect of all of this. The main thing is IF you communicate, then you can worry about how you communicate.
I am very aware that soem people, no matter what approaches they try, will not, and cannot successfully use the CI. I knwo a little girl very well that that may be the case. Everyoen is signing and speaking with her. Communication is the most important aspect of all of this. The main thing is IF you communicate, then you can worry about how you communicate.
atabr5....i am glad that you asked this question. I just found this website a little over a week ago and have been researching A LOT as well because my youngest son is a candidate for a cochlear implant. The only downfall that I have heard from some people is about sports. I have a boy, a very active boy. In our family, we love baseball, dodgeball, motorcycles, all that fun but rough stuff and I worry about what if my son one day wants to do those sports? Well, we could not go ahead with the implant and we wouldn't have to worry about it OR we could go along with the implant and then worry about it. Even if he decides later in life that he doesn't want his implant on, and we can't get it removed, I guess he still is at a loss of playing though sports. But then again, that is what I have heard. If anyone else has heard different, I would LOVE to hear from you or anyone with a CI who plays sports like those. Do you have to really worry about it???
Courtney D.
Courtney D.
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Hi! I am new too. How old is your son? If he is old enough to understand what is going on and he wants to hear then, go for it. I wonder if there is a kind of protective head gear that someone has thought of to protect people that has had CI. That's an idea. I think baseball and football would be the worse. Maybe wrestling as well. Does our son seem to take an interest in sports now? There is always a sacrifice in any decision making. He needs to think about what is more important...hearing or sports. I hope this doesn't sound too mean...it sure isn't intended to. Good luck with the decision!