CI on 6 year old.

[Cheri]

Since I do not believe the story, in my mind there is no one to feel sorry for.

That's fine, You know what? Next time you create a thread or a post about your child well doing on her/his cochlear implant I would say to you up front that "I do not believe your story"

Now tell me how would that make you feel? Tell me honestly Rick.

 

[Liebling:-)))]

That's fine, You know what? Next time you create a thread or a post about your child well doing on her/his cochlear implant I would say to you up front that "I do not believe your story"

Now tell me how would that make you feel? Tell me honestly Rick.

Yeah, that´s what I thought so.

I bet Rick would not like it when I tell him that I don´t beleive his story about his daughter in his thread.

 

[shel90]

That's fine, You know what? Next time you create a thread or a post about your child well doing on her/his cochlear implant I would say to you up front that "I do not believe your story"

Now tell me how would that make you feel? Tell me honestly Rick.

I agree with u. We have all taken his word cuz we feel he has no reason to lie but when a Deaf person postes negative stories about CIs, he doesnt believe it? Makes me wonder if he looks down on Deaf people or what? No respect...u know, I would like to respect the parents here but if no respect back, then it is bye bye to my respect.

 

[shel90]

You don't.

But the difference is that I do not care whether you, and I mean you, believe them or not.

Yea, u dont care ..I already knew that a long time ago. I really think u look down on deaf people, especially those without CIs.

 

[jillio]

Yea, u dont care ..I already knew that a long time ago. I really think u look down on deaf people, especially those without CIs.

Still puzzles me how you can raise a deaf child--with CI or not--and watch that child struggle to overcome all the obstacles that is put in her/his way (and, yes, children with CI still stuggle!) and then have absolutely no empathy for another child's pain or have no sense of pride in another child's accomplishment unless it relates directly back to your own small and limited viewpoint. It seems to require a total absence of human feeling! Makes me wonder if you are even capable of feeling emotion for your own child or empathy for what they have gone through, or if you simply see that child as an object. And before anyone gets defensive and automatically assumes that "you" means them, I am using "you" in a generic form to mean "person".

 

[shel90]

Yeah, that´s what I thought so.

I bet Rick would not like it when I tell him that I don´t beleive his story about his daughter in his thread.

He said he doesnt care what we believe or dont believe. To him, we are nothing and dont forget that.

 

[Liebling:-)))]

He said he doesnt care what we believe or dont believe. To him, we are nothing and dont forget that.

Well, it´s easy for him to say this because he know that he would not create his thread about his daughter.

 

[shel90]

Well, it´s easy for him to say this because he know that he would not create his thread about his daughter.

Why should he create a thread? His daughter is all grown up and perfect, according to him. I am happy for him and her, seriously but I dont think he believes me. It is too bad cuz we all can really learn from each other but he is unwilling to learn from us by calling us liars or creating BS stories.

 

[Liebling:-)))]

Why should he create a thread? His daughter is all grown up and perfect, according to him. I am happy for him and her, seriously but I dont think he believes me. It is too bad cuz we all can really learn from each other but he is unwilling to learn from us by calling us liars or creating BS stories.

I see no problem if Rick or any CI supporters are happy what they are but should show their respect and feeling bit or try to positive their feedback how to help a 6 years old boy or show sympathy. I beleive the thread creator would collect positive feedback or sympathy from us. All what I see here is accuse anyone for negative CI issues by calling us liars, use something to compare with CI issues or whatever... That´s just because they don´t like to hear the negative side over CI issues... They have to accept either they like or not... but they cannot accept it... Oh Well...

 

[Audiofuzzy]

Hello again

does anybody knows what actually the boy himself wants? does he want the CI or not?


Fuzzy

 

[Boult]

That´s just because they don´t like to hear the negative side over CI issues... They have to accept either they like or not... but they cannot accept it... Oh Well...

That is not the case for me. I do want to hear the negative side of CI. I have read them at ProblemCI : If your CI is not performing well...here is the place to tell

The problem with us who haven't shown empathy or sympathy is that the story is suspicious. We have right to be skeptical of the story.

The problem is this line of sentence which is impossible in medical field. No surgeon would dare to do that such step. even though he said he did make sure it is clear and that's what the adoptee father told him.

He mentioned when his adopted son had CI surgery at age 4 it didnt go well, infection grew so had to remove CI to cure the infection. Doctor use the same CI equipment to the left side of the child's head. That went well. Then when the infection cured on the right side, doctor replanted the new CI back in, infection grew back again so removed again.

The Doctor can't use the "same CI equipment" in other side after it is exposed and contaminated. that "same CI equipment" has to be contained and sealed and sent back for investigation. The doctor will have to open a NEW one to be implanted in right ear.

That's what bother US therefore hard to express empathy or sympathy.

I can tell you we will express those if his post was like this...

I just talked to this man yesterday who is in the 60's adopted a forgien child that is profoundly deaf. He mentioned when his adopted son had CI surgery at age 4 it didnt go well, infection grew so had to remove CI to cure the infection. Doctor used the NEW CI equipment to the left side of the child's head. That went well. Then when the infection cured on the right side, doctor replanted the new CI back in, infection grew back again so removed again. Now the child is age 6 and his whole right side of face is paralized. That means there was a nerve damage caused by the surgery. It came to my mind: The boy have to deal with the paralized face for the rest of his life. His father said "Well at least he still have hands and feet." With a big smile on his face, acting like there is no problems. He said "In June when my adopted son's infection go away he will go back and still have the surgery on the head so he can have TWO CIs.

by the way liebling see this;
Entrez PubMed

Entrez PubMed

and a blogger who willing to risk facial paralysis;
Berke Outspoken

Am I overreacting here?? Cochlear implants are very acceptable to me in comparison. I'll take the risk of facial paralysis over the risk of losing the ability to breathe anytime! I'm fine with little babies getting cochlear implants but I do not want to see little babies getting auditory brainstem implants!

It's possible that facial paralysis can be undone since it is created by surgery itself not by CI or infection.
IFTF's Future Now: Humanity Gets an Upgrade at the MIT Media Lab

Douglas Smith of the University of Pennsylvania shared some results of his work, which focuses on quickly growing long strands of nerve cells in culture using a mechanical stretching device that mimics the tension that stimulates nerve growth in large, rapidly growing animals like whales. In his lab, researchers have been able to grow nerve strands as long as 10 cm at a rate of 1 cm per day. The cells in the strands self-organize into cohesive linear structures, and they have had success taking these strands, wrapping them in collagen and inserting them into rats that have had existing nerve segments removed. While they are not yet sure if the grafted segments will allow normal nervous system functioning to be restored (i.e. to undo the surgically created paralysis), they have proven that electrical current is passing along the nerve-graft boundary, indicating that new connections are being formed.

 

[rick48]

That's fine, You know what? Next time you create a thread or a post about your child well doing on her/his cochlear implant I would say to you up front that "I do not believe your story"

Now tell me how would that make you feel? Tell me honestly Rick.

Honestly, I do not think I could care less whether you and your pals believe I have a daughter who is doing well with her cochlear implant.
Rick


Boult, you hit the nail right on the head. Apparently, one is not allowed to raise doubts about a post or to point out seemingly glaring factual errors. We are all supposed to express sympathy and sorrow, just like for those poor children who have been electrocuted by their cochlear implants.

Oh....wait a minute, that story was a hoax, a complete fabrication that myself and others exposed. I guess we showed our "disrespect" by doing that.
Rick

 

[dreama]

So much nonsense in 1 post...

• "solutions that don't involve invasive surgical procedures" .... There are none available that comes even close to CI

NOT TRUE! How about the internet, Where deaf and deafblind people can socialise, shop, gain information etc...

One does not need an implant if one knows BSL. For communication with hearies off line one can use pen and paper. There is also a vibrating device that alerts you to noise without having to suffer from so much sound polution that there is out there.

I often hear deafblind CI users saying they were isolated before there CI. I feel the same way about my computer. Thanks to my computer I am no longer isolated at all. For communicating off line I use a simple device which I make myself out of cardboard called a comunication card. It has the braille alpabet over the print alphabet. People put my fingers over the print letters to spell out words. I communicate with hearies that way who don't know deafblind manual. They can also write block captital letters on my hand so I don't need a CI. I save the NHS a lot of money that way.

• "chance of a small amount of sound perception!".... It's hardly a chance, and it's a lot of sound perception.... ask any CI-user on this board..

Yes, my friend who had a CI noticed that. Unfortunately she did not like all that sound perception. She was turning into a nervious wreck whereas before when I knew her she was so much more laid back. She still prefered using deafblind manual. Seems like the worst of both worlds. Another friend of mine was more successful with her CI. She was very pleased with it. However she died from the steroids that she took as pain relief for her Arthritis. About a year after her CI.

Looking forward to see you failing to come up with some information backing up your statements...
And when you realise you're talking nonsense... don't worry, no apology is expected... you can just pretend it never happened........

I think Jillo makes very good sense. I'm sure she has plenty of information to back her up. How about you?

 

[Boult]

dreama,
There's a member on AD and she's deafblind and has CI. Her username on AD is "Hear Again" she loved it and no she's not like your friend that you mentioned. we ci users are aware that everyone is unique so therefore you are unique in your own situation. And that CI is not for everyone but works for majority of ci users.

I haven't seen Hear Again on AD in a while so I assume she's busy with her education since she's college student.

 

[dreama]

Boult.
I know of Hear again from reading her posts. We are on differant sides of the fence on this topic but I find her posts interesting to read anyway.

I know that some deaf and deafblind people like their CI's. Deafblind also benifit from other tecnology such as Computers and the internet. Unfortunately, unlike CI's people are not so willing to pay for expensive computer equipment such as braille displays and you can forget about training as there is not so much help available. Luckily I have enough useful vision to use a screen magnification software called Zoomtext. I did have some help but had to figure a lot of it out myself.

The way I see it, some people can cope with noise pollution/sound perception. Some people can't. I have no problem with people who volenteer to have CI's. I just wish that people would not get so defensive when the down side of these machines are pointed out.

 

[shel90]

Boult.
I know of Hear again from reading her posts. We are on differant sides of the fence on this topic but I find her posts interesting to read anyway.

I know that some deaf and deafblind people like their CI's. Deafblind also benifit from other tecnology such as Computers and the internet. Unfortunately, unlike CI's people are not so willing to pay for expensive computer equipment such as braille displays and you can forget about training as there is not so much help available. Luckily I have enough useful vision to use a screen magnification software called Zoomtext. I did have some help but had to figure a lot of it out myself.

The way I see it, some people can cope with noise pollution/sound perception. Some people can't. I have no problem with people who volenteer to have CI's. I just wish that people would not get so defensive when the down side of these machines are pointed out.

Same here..:Ohno:

 

[neecy]

Its not a case of being defensive when downsides of CI's are pointed out - its more a case of ensuring that the CORRECT information is getting out and not simply panic inducing mumbo jumbo, like certain people who have sworn up and down that you can get electrocuted if you have a CI and take a shower. There's a difference between disagreeing with something and making sure disinformation isn't spread. When you consider how many MYTHS have been spoken as fact here and TAKEN as fact - you can't blame those who try to make sure the whole picture is seen first.

 

[shel90]

Its not a case of being defensive when downsides of CI's are pointed out - its more a case of ensuring that the CORRECT information is getting out and not simply panic inducing mumbo jumbo, like certain people who have sworn up and down that you can get electrocuted if you have a CI and take a shower. There's a difference between disagreeing with something and making sure disinformation isn't spread. When you consider how many MYTHS have been spoken as fact here and TAKEN as fact - you can't blame those who try to make sure the whole picture is seen first.

I can understand where u are coming from about the situation with the electrocution thread. That was a panic mode one.

However, what if this situation is true? The OP is not applying this situation to all CI users. Just venting about one situation and wanted our feedback. At first, most of us reacted to this situation only but then one thing led to another and it just went off topic. Let's say it is not true but it is nice to discuss if a child should be re-implanted or not if he/she developed an infection.

Just like I brought up about one kids where the wires inside got fused to the wrong nerve and had to get emergency surgery, it is up to u to believe me or not. I dont really care but by bringing it up, I am not saying that will happen to all CI users.

In fact, all of the CI users I have met have never gotten an infection as far as I know.

Just many of us noticed that whenever we bring up a bad situation about a CI user, the people who support CIs get "defensive" for lack of better word.

Like I said in another thread, my primary concern is for those deaf children who do not benefit from their CIs but doesnt mean that I am saying all CIs are a failure. So, what's the big deal? Am I allowed to have more concerns for one group over the other? Like many of u are more interested in the success stories which there is nothing wrong with that. I just am not cuz that's not what I am here for. Hope that makes sense.

At the beginning when I first joined I have always said it is none of my business if the parents want to implant their children..just only want both sign and oral language esposed to the children at the same time instead of sign language later after discovering that some children didnt benefit from the CIs.

As Cloggy stated, technology is getting better so the chances of children not benefitting are getting smaller. Whatever makes people happy, as long as the children grow up happy and have a good self esteem about themselves, that's all.

Yes, I would like the children to continue with sign language and interact with other deaf people who dont have CIs but I have no control over that. I can still express my wishes though.

 

[dreama]

Its not a case of being defensive when downsides of CI's are pointed out - its more a case of ensuring that the CORRECT information is getting out and not simply panic inducing mumbo jumbo, like certain people who have sworn up and down that you can get electrocuted if you have a CI and take a shower. There's a difference between disagreeing with something and making sure disinformation isn't spread. When you consider how many MYTHS have been spoken as fact here and TAKEN as fact - you can't blame those who try to make sure the whole picture is seen first.

There are Myths on both sides. The claim that CI's 'cures' deafness for starters. Also calling it a 'bionic ear' is another. People may get misled by that in thinking they will get superhuman hearing if they have a CI done which is definately NOT the case. Also when people say 'you have everything to gain and nothing to lose'. That too is a myth. You do lose a certain tranquility from sound pollution. You also lose any natural hearing you may have and their is a possiblity of losing good health if things go wrong. So their are myths on both sides I think.

Another big myth is when people say it's the 'only' way. Which is so not true. There are many options that are much cheaper for communicating with hearing people. I communicate with hearies all the time and I don't have a CI. I have a computer and am linked up to the internet so can communicate with people that way.

 

[deafskeptic]

There are Myths on both sides. The claim that CI's 'cures' deafness for starters.

No responsible doctor would ever say that a CI is a cure for deafness. My own surgeon pointed out to me that although my hearing will be much improved, I'm not cured of deafness. My own father who is a retired doctor pointed out to me that my hearing may never be normal.

Also calling it a 'bionic ear' is another. People may get misled by that in thinking they will get superhuman hearing if they have a CI done which is definately NOT the case. Also when people say 'you have everything to gain and nothing to lose'. That too is a myth. You do lose a certain tranquility from sound pollution. You also lose any natural hearing you may have and their is a possiblity of losing good health if things go wrong. So their are myths on both sides I think.

True enough on most counts but I haven't heard of most people getting poor health as a result of the CI.

My natural hearing was quite poor and I like the results that I get with my CI. Who cares if I don't hear the natural way as long as I like the results?

Another big myth is when people say it's the 'only' way. Which is so not true. There are many options that are much cheaper for communicating with hearing people. I communicate with hearies all the time and I don't have a CI. I have a computer and am linked up to the internet so can communicate with people that way.

I agree that it's not the only way but you do have to consider all the pros and cons; ASL (BSL in your case) is a wonderful language but one major disadvantage is that most hearing don't know it.

As for lipreading, it's useful but if your hearing is quite poor it can be exhausting trying to lipread all day. I used to get aches in my face from the strain of lipreading all day.

Speech is useful but a major disadvantage for those who are profoundly deaf, it can make hearing who hear their good speech think they're not really deaf at all. They don't always look at you or slow down enough so you can understand them.

I've excellent speech with no deaf accent (I had a slight accent before the operation) and when I met a total stranger in the past, I'd pretend I couldn't speak. It's much easier to convice the hearing you're deaf that way.

I always feel like saying to the hearing, "Yes, I've good speech, but did my speech make it easier to understand YOU?" The hearing seem to focus on speech so much that they forget that the deaf speaking has to be able to understand them.

With the implant, it makes it much less of an effort to understand people but there are risks like losing all of your natural hearing, infections in rare cases, facial paraylisis (it seems to be temporay rather than permant), numbness in the ear (that happened to me but it's fading now) but that's also not permant. Also the implant may fail.

If the child isn't implanted early, he'll not get the full benefits of the implant. I'm a deaf adult and I'm well aware that I may not get as much benefit with it as a late deafened adult or a child who was implanted early.

If you don't implant the child, you'd best be motivated to learn sign or other ways to commicate with a deaf child. Otherwise, the child is going to have problems with language down the road. You'll also have family problems down the road if you don't learn to commicate with the child. Most parents of deaf children who take this route aren't like Jillo.