AlleyCat

You're very lucky you survived the infection. Many babies don't. Another reason not to implant babies without a choice.

Deafness

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Audiofuzzy

Define "many", please, since you are claiming this.

I would like to have ratio of surviving to not surviving, too, please.

Fuzzy

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The Highlander

My wife lost her sense of taste for almost three months after surgery.

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Lily7

I had a BUNCH of nerve issues after all three of my CI surgeries (yes, three, one failed.) I don't really feel like getting into it right now and doubt anyone would care of the specifics, I just wanted to respond to the original post because it can and does happen.

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Beowulf

What the..?
Do you think there is a magic number that makes the deaths acceptable?

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BleedingPurist

Don't believe "acceptable" is really the issue here. It would be nice to know how many deaths we are talking about citing specific data. "Many" indicates that it is common, which is news to me. Are babies dying left and right as a result of CI surgeries? This is your chance to shine and show the damning data. Then we can debate whether the factual number is acceptable. One step at a time. First... supporting evidence. Then we can go from there.

BleedingPurist

That's pretty common, though it doesn't usually involve complete loss of taste. My sense of taste was somewhat "salty" following surgery. It went back to normal once all of the swelling went down.

DeafCaroline

Been doing a lot of research about CIs and learned that defective implants are actually more problematic and more painful than getting implanted. Side effects of defective implants according to the FDA can range from pain, discomfort, fussiness, refusal to wear the external aid, sudden loud popping noises, etc.

So while getting implanted may have low risks, the rate of pain and discomfort from implants failing is much higher.

Considering that all cochlear manufacturers have had to do several major recalls of defective implants, I'm wondering how many patients have had to deal with pain and discomfort of their implant as well as emotional suffering from having to get explanted then re-implanted. The sad thing is that babies and toddlers not yet able to speak have no way of expressing their discomfort, other than being generally fussy and not wanting to wear the external aid. I do remember reading posts from hearing parents here and there talking about their babies and/or toddlers not wanting to wear the external aid or how they keep taking it off. Makes me wonder if it was because they were truly uncomfortable due to their implant not working properly and their parents never knew and kept forcing them to wear the implant in discomfort, thinking their kids are just being kids.

AlleyCat

Please don't exaggerate. Nobody here has said babies are dying left and right as a result of CI surgeries. You know as well as I do that if that were the case, CI surgeries would not be allowed to continue in the same fashion. Having said that, anyone who knows anything about CIs, whether it be parents of Deaf children, adults getting CIs, or anyone considering CIs know that there are always surgical risks with any surgery, and there are known risks with CI surgeries as well. Any google search pulls up scores of websites with known issues. I don't need to do your homework for you because it is already an indisputable fact that there are known issues.

saywhatkid

Is there an acceptable number higher than zero? You tell me.

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BleedingPurist

You're confusing things. You're not doing my homework for me, you're doing yours. You made the cryptic statement "Many babies don't," knowing it would be read by parents all over. It's your statement. Back it up with facts. Other than that, I don't really care. I respect people with facts.

BleedingPurist

Acceptable isn't the issue. I do know if I were implanted as a baby and looked back as an adult.. I'd thank my parents for making that decision and giving me the gift of hearing, regardless of perceived risk.... none of that "you mean you risked my life to give me CI??" hysterics.

AlleyCat

It IS a known fact. Anybody who knows anything about CIs know it. It's been discussed to the VERY DEATH on this board. You being a newbie and not looking at previous posts, threads might not know how extensively we've discussed it. Ad nauseum. I already see what you are about -- you got banned within your very first week here. I'm not going to play your game, nor am I going to argue my statement, YOU can find facts to dispute me.

AlleyCat

Assuming you were implanted as a baby and died, or had facial nerve damage, I wonder if you would still be here being so thankful. My guess? Probably not. The "acceptable" question by SWK was very valid.

saywhatkid

You want hysterics? Go tell the parents of a child that died from this surgery, "Sorry, we lost him/her on the table."

BTW, I suspect that you are a shill for a CI manufacturer/installer. It is only my opinion. Feel free to report this post.

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saywhatkid

How about this; I believe you are a paid spokeperson for a CI installer/maker. Have you posted anything other than CI - supportive drivel?


Didn't think so.

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BleedingPurist

I am not playing a game. I rest my case.

BleedingPurist

As I said... hysterics. If I were a paid spokesperson I'd proudly state it so.

Cheetah

I'm thinking we might need some kind of a disclosure requirement... If you work for or advocate for a CI company, that info should be disclosed. You know where we are coming from... We would like to know where you are coming from.

If you are looking to implant a child with a CI, you should get all the facts. Lets be honest, all surgeries come with risk. To many of us here, that risk is too great for a CI. But each person has to decide for themselves what risk they are willing to accept. The catch here? Very young children cannot make that decision because they cannot measure risk yet.

I know what the risk is, and it scares the shit out of me. But I get to make this decision for myself with full knowledge and understanding of what might go wrong. Parents are making this choice for thir babies and many do not fully understand the risk they are taking. They see the "model" children and that's what they want. The reality is that each child has a different result. There is no way to know how well a child will hear or function with w CI. Do you really want to subject a child to guess work? This is scary shit. I don't think people fully understand this.

Being deaf is not scary. Well, it is for the hearing folks. But not for those of us that grew up with it. It's just a way of life.

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saywhatkid

And if you proudly stated so, your account would be removed. Keep pushing your "child improvement tools" onto scared parents. Play into their hysteria.

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Frisky Feline

Curious, i notice that you come here to check CI section only and no introduction.

So i ask ...
how long have you have CI? Since this thread is related with your experience. Is there any problem or feeling numb or anything with your head?

BleedingPurist

I don't do any introductions on any message board. I just speak my mind. When it comes to d/Deaf-related things, I'm really only interested in the CI aspect. Perhaps with time after interacting with others like me with a CI, which I've had for 6 years, I'll branch off into other topics interacting with them or others who I have come to like and develop a friendly interaction with. That is something that occurs over time.

Since the swelling went down after surgery, no, no numbness. Just the normal temporarily-altered sense of taste.

Beowulf

I thank my parents for allowing me to keep the gift of silence. It is just a matter of perspective. I am glad you are happy with your CI, and I know many who are, as well as many who aren't.

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Cheetah

My ex and I both received CI at the same time. I was a successful implant, hers was a failed implant. There is a 50 percent success ratio right there. Something to think about.

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AlleyCat

I'm sorry to hear hers failed. Is the cause known?

Frisky Feline

Yea there are several CI users here on AD. You will find more more of them though.
Do you know ASL or any form of sign languages?

saywhatkid

Does that include "sign off?"

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Frisky Feline

Cheetah

Yes, the internal part malfunctioned. But she refuses to go through the surgery again to get it replaced.

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Cheetah

lmao!

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