CI's in Children

[R2D2]

It's not wrong to have feelings and opinions but I think that all Audio is saying is that waiting until the child is older to make their own decisions is not as straightforward as people often make out.

When advising people to wait until their children are older for an implant there has to be some acknowledgement that this involves a cost, that the child may not derive as much benefit from the CI compared to when they were younger. This cost needs to be weighed up and discussed.

This is just being responsible. After all someone might read the posts and on the strength of them just decide not to implant their profoundly deaf baby who gets no benefit from hearing aids thinking that it can be left until when they are old enough to decide without realising that there are disadvantages involved with that decision.

Everyone's personal decision is right for them, provided it is based on access to the facts.

Surely this is not a problem for you?

 

[Cloggy]

Just wanted to let you know that those of us who choose to have a CI are still deaf.

Define "deaf".

 

[Lillys dad]

I'm just gonna jump in here with a couple comments.
If you do a web search of "cochlear implant surgery"-"documentary"-"Alan Alda", you should be able to see a surgery that was video taped a couple years ago, if memory serves (usually it doesnt) there is a 3 part seried that was put together for some show like 48 hours or 60 minutes.

Another comment, C.I. surgery, at least for chilodren is a 5 hour procedure. It is no no way a small deal. Most side effects are caused by complications with the anesthesia. Surgical side effects are nerve related. A part of the procedure include making an incision between 1 of 2 auditory nerves. Unless there are anatomical abnormalities, the auditory nerve is always located in the same general area. There is a pretty small chance that one of the nerves may be cut. Before making that incision, the auditory nerve is mark so it will be clearly visible to avoid damaging it. The other nerve issue is related to taste.
Its been a while since I read up on this stuff, but I believe there are four nerves that go to your tounge which is responsible for your ability to taste food. You have two of these nerves on each side of your face. There is a relatively small chance that one of these nerves may be damaged. If it is damaged though, you still have three good taste nerves.

The reason that the procedure takes so long is that they have to drill a very small hole through the mastoid bone, this is that really thick area of skull directly behind the lower portion of your ear. This took about two hours to complete with my daughter.
Those 5 hours were the longest hours of my life. Ive been through some seriously nasty and long hours in my life, burying coworkers killed in the line of duty, conducting interviews of witnesses that watched a friend of mine get murdered, notifying parents that thier 1 1/2 year old little boy has been killed and so on. I would go through all of that again in a heartbeat if it could have made that 5 hours go any faster.
Sorry, got a little distracted.

 

[Cloggy]

..............
All that time I simply want to point out to some pple who reject CI on the spot that sometimes their cons against CI are not reasonable.
Like saying "do not implant babies, let them make their own decision later".
You see if you researched about human development you would have better understanding why exactly babies and young children would benefit MOST from having CI. (It is never an easy decision regardles)

If you say then "OK I understand, on one hand my child would develop optimal language skills when implanted early, but I feel she/he will be OK as deaf" - then I say fine! it's your child, your decision,

But DON'T tell me please "my child should choose", because then IT WILL BE TOO LATE for the FULL benefits!!
Parents work is never easy. I do not say "you must implant your baby" - I am saying MAKE AN INFORMED DECISION.
Research, ask around people whose child got CI, ask drs, ask CI technicians etc. Ask about language development and hearing development because folks humans LEARN how to hear it's not like a switch on/off - now you hear now you don't.
That is why we deaf pple when we hear something we often ask- what is it? because we didn't learn how to recognize sounds.

But most of all teach your child about deaf culture, why it is important part of any deaf and HI person life, and that CI does not mean a child should abandon the deaf "ways".

Another thing is that irritates me is this whole idea that CI alone is responsible for the deaf dropping out from deaf culture.
No, no and once again no!
it 's the mentality- how you think about your self, how you relate and compare to other pple. How do you perceive ypourself in your own eyes.

Not the CI itself. CI is just a tool, and how does one choses to use this tool is up to that person.

make an informed decision, not emotional one.

Fuzzy

Wish I could say it better... but I can't. There are a lot of misconceptions going around, and a lot of misinformation. By respecting one's opinions and listning to one-other, we could avoid these.

 

[R2D2]

Define "deaf".

Deaf for me is not being able to hear anything when the hearing aid or CI is off. It doesn't matter how you communicate or what mannerisms you have, you are deaf. Just like a black person is still black whether they like classical music or rap, live in North Dakota or Harlem.

For me a hard of hearing person can hear a bit with the hearing aid off but may struggle somewhat. I've never felt I was HOH since I can't hear anything softer than the loud slam of a door with my hearing aids off.

 

[Cloggy]

Just because it's how we feel it doesn't make our argument wrong or our feelings wrong. Don't we have a right to our opinions? we are legally entitled to believe anything we like, You cannot just go on saying that our point of argument are pointless. Nobody here had say anything about not implanting on babies/children, some of us had said we don't believe, that is different than telling someone don't implant their children. Are they going to listen to us? Of course not, But, It is plain wrong for me or some of us to hold our opinions on this very subject. This is a discussion board, we have rights to argue our point of view if we wish to do, just like some of you here do.

I recall you calling it brainsurgery - it is not. The argument about "let the child choose" is invalid as well, like explained elsewhere.
There's nothing wrong with the feelings. But do not back feelings up with wrong information or misconceptions. Or, when misconceptions are show, acknowledge that. I have done that, and I have seen that happening in this thread. It's good to watch it.

I have a great feeling that my daughter has bi-lateral CI. There's nothing wrong with this. But if I tell anyone WHY I did that and you notice that I have based the decision on WRONG information or MISCONCEPTION, I hope any one of you will inform me.

 

[Cheri]

I recall you calling it brainsurgery - it is not.

Skull, brain whatever, It is on the the side of children's head, some people are going to see that view and thinking it is connected to the brain or skull. Not everyone is going to realized it is not a brain surgery. Don't be surprised if more people out in the world who doesn't have a CI ask about it.

 

[Cloggy]

I'm just gonna jump in here with a couple comments.
If you do a web search of "cochlear implant surgery"-"documentary"-"Alan Alda", you should be able to see a surgery that was video taped a couple years ago, if memory serves (usually it doesnt) there is a 3 part seried that was put together for some show like 48 hours or 60 minutes.

Another comment, C.I. surgery, at least for chilodren is a 5 hour procedure. It is no no way a small deal. Most side effects are caused by complications with the anesthesia. Surgical side effects are nerve related. A part of the procedure include making an incision between 1 of 2 auditory nerves. Unless there are anatomical abnormalities, the auditory nerve is always located in the same general area. There is a pretty small chance that one of the nerves may be cut. Before making that incision, the auditory nerve is mark so it will be clearly visible to avoid damaging it. The other nerve issue is related to taste.
Its been a while since I read up on this stuff, but I believe there are four nerves that go to your tounge which is responsible for your ability to taste food. You have two of these nerves on each side of your face. There is a relatively small chance that one of these nerves may be damaged. If it is damaged though, you still have three good taste nerves.

The reason that the procedure takes so long is that they have to drill a very small hole through the mastoid bone, this is that really thick area of skull directly behind the lower portion of your ear. This took about two hours to complete with my daughter.
Those 5 hours were the longest hours of my life. Ive been through some seriously nasty and long hours in my life, burying coworkers killed in the line of duty, conducting interviews of witnesses that watched a friend of mine get murdered, notifying parents that thier 1 1/2 year old little boy has been killed and so on. I would go through all of that again in a heartbeat if it could have made that 5 hours go any faster.
Sorry, got a little distracted.

Thanks for sharing - good info.

I recall that for my daughter (2½ at the time), the decision was the biggest hurdle. The operation - both sides in 1 operation - lasted from 09:00 to 13:00. After this, she was in the recovery-room, but was quickly send to the normal ward because she was too awake. She felt a bit sick, threw up, got a paracet and from there on started looking for the tricicle to start playing. She never got any other painkillers. Actually, the biggest "problem" was the IV in her foot (fluids) but when this was removed, we couldn't keep up with her.

 

[Cloggy]

Deaf for me is not being able to hear anything when the hearing aid or CI is off. It doesn't matter how you communicate or what mannerisms you have, you are deaf. Just like a black person is still black whether they like classical music or rap, live in North Dakota or Harlem.

For me a hard of hearing person can hear a bit with the hearing aid off but may struggle somewhat. I've never felt I was HOH since I can't hear anything softer than the loud slam of a door with my hearing aids off.

Good definition, apart from strange comparison with black people.
But yes, according to your definition you're deaf.

 

[Cloggy]

Skull, brain whatever, It is on the the side of children's head, some people are going to see that view and thinking it is connected to the brain or skull. Not everyone is going to realized it is not a brain surgery. Don't be surprised if more people out in the world who doesn't have a CI ask about it.

And another misconception. The implant cannot be seen. Only the spool, and that can be hidden under the hair.
But even so, we don't hide the CI on my daughter.
And the "people will..., people think... "arguments just shows that poeple need to be informed. It's definitely NOT and argument to base CI on.

 

[Lillys dad]

Cheri, I understand your point about how people will look at it being inside the head being equated to the brain. That is an easy assumption to make. However, it is still incorrect. When incorrect statments are made, they (not always intentionally) lead to false ideas, which lead to bad information. When bad info is repeated, it becomes a factoid. A factoid is something that is not true being accepted as fact. When that happens, the true facts get lost.
To avoid all of this, you need to use clear and correct data when discussing this topic.
The simple fact remains that the CI is actuall yimplanted between the skin and the skull. The only equiptment that goes inside the skull is a small wire that goes into the cochlea. The only involvement the CI has with the brain is the fact that the auditory nerves pick up the stimulus of the electrodes (inside the cochlea) and the nerve brings the info to the brain. At no time does any of the implant touch the brain. Only the skin, skull, and cochlea.
The only way people will realize the CI operation is not brain surgery is when people start using the proper terminology. Until then, you are only adding to the sea of false info.
I have actually corrected some teachers of the deaf. When the coil (magnet) pops off my daughters head they always say "uh-oh, her implant fell off, lets put it back on so she can hear". I got sick of hearing them use the wrong terminology so I brought it ther attention. Besides, how can her implant fall off when it is implanted in her head. The coil fell off which is connected to the speech processor, which is connected to the data cable, which is conneted to the body worn battery pack.

 

[Cheri]

And another misconception. The implant cannot be seen. Only the spool, and that can be hidden under the hair.

hidden under the hair? Maybe you speaking of girls or on women, but certain not on boys or men.

 

[Cheri]

Cheri, I understand your point about how people will look at it being inside the head being equated to the brain. That is an easy assumption to make. However, it is still incorrect. When incorrect statments are made, they (not always intentionally) lead to false ideas, which lead to bad information. When bad info is repeated, it becomes a factoid. A factoid is something that is not true being accepted as fact. When that happens, the true facts get lost.
To avoid all of this, you need to use clear and correct data when discussing this topic.
The simple fact remains that the CI is actuall yimplanted between the skin and the skull. The only equiptment that goes inside the skull is a small wire that goes into the cochlea. The only involvement the CI has with the brain is the fact that the auditory nerves pick up the stimulus of the electrodes (inside the cochlea) and the nerve brings the info to the brain. At no time does any of the implant touch the brain. Only the skin, skull, and cochlea.
The only way people will realize the CI operation is not brain surgery is when people start using the proper terminology. Until then, you are only adding to the sea of false info.
I have actually corrected some teachers of the deaf. When the coil (magnet) pops off my daughters head they always say "uh-oh, her implant fell off, lets put it back on so she can hear". I got sick of hearing them use the wrong terminology so I brought it ther attention. Besides, how can her implant fall off when it is implanted in her head. The coil fell off which is connected to the speech processor, which is connected to the data cable, which is conneted to the body worn battery pack.

You don't understand what I'm saying but never mind, I don't feel like repeating, Take a good look at the picture in my post that's what I'm speaking of that it looks like it is connected to the brain or skull. Don't get upset when people questioned about it. There is no reason to get offensive when people ask questions regarding about CI, hearing aids or deafness, because people ask me questions too and I don't mind answering them. So you should too not get too uptight when peoiple have questions or think differently.

 

[R2D2]

Good definition, apart from strange comparison with black people.
But yes, according to your definition you're deaf.

It's not so strange to compare with Black people because the black community also has parallel discussions on what defines a black person.

Some black people criticise or make fun of others who may speak with a particular accent, who have "white" mannerisms, do not listen to music associated with black people and so on. The term "acting white" is often thrown about in those instances, as if to be truly black you have to act, speak, dress in a certain way and listen to particular music.

At college I had a friend from Jamaica who was criticised by his friends for going to university because it wasn't a black thing to do in their eyes.

 

[Lillys dad]

I'm not upset at all. In fact, I like when people ask questions. It is a chance to get correct info out in the public.
I am merely trying to say that saying it is implanted in the brain is incorrect. By stating things that are not correct, you are perpetuating myths, rumors, and false ideas about CIs.
I gotta go to bed. I get off work at 11pm this week. I get to bed around this time. I have to wake up in6 hours and take my daughter to preschool. I stay there till noon when class is over. I do this so I can keep on track wioth the the teachers. I want the gestures and speech therapy to be the same at home and school, so I spend as much time as possble there.
The problem after preschool, is I take her to daycare, then go home I only have about an hour until I go to work. In all it makes an 18 hour day with 1 hour during the day to chill out. Long days with little sleep make Jeremy a grumpy boy. Goodnight.

 

[Cloggy]

hidden under the hair? Maybe you speaking of girls or on women, but certain not on boys or men.

If you had READ my post, it said:

The implant cannot be seen. Only the spool

which your picture showed in a good way.

 

[Cloggy]

It's not so strange to compare with Black people because the black community also has parallel discussions on what defines a black person.

Some black people criticise or make fun of others who may speak with a particular accent, who have "white" mannerisms, do not listen to music associated with black people and so on. The term "acting white" is often thrown about in those instances, as if to be truly black you have to act, speak, dress in a certain way and listen to particular music.

At college I had a friend from Jamaica who was criticised by his friends for going to university because it wasn't a black thing to do in their eyes.

NOw I'm wondering how you are going to describe a black deaf person from jamaica.....

 

[Cloggy]

You don't understand what I'm saying but never mind, I don't feel like repeating, Take a good look at the picture in my post that's what I'm speaking of that it looks like it is connected to the brain or skull. Don't get upset when people questioned about it. There is no reason to get offensive when people ask questions regarding about CI, hearing aids or deafness, because people ask me questions too and I don't mind answering them. So you should too not get too uptight when peoiple have questions or think differently.

Cheri, Questions are welcomed. Corrections as well. From both sides. He informed you about the correct way to describe CI.
He's not offensive, he's not getting upset, he's not getting uptight. When people correct you, why don't you just thank them for this?
He's right 100% in his post, and then instead of acknoledging it, you call him "upset"and "uptight".

You would correct me if I would say that deaf people can't hear, wouldn't you? And I would acknoledge it. Realising that I learned something.

 

[Cheri]

Cheri, Questions are welcomed. Corrections as well. From both sides. He informed you about the correct way to describe CI.
He's not offensive, he's not getting upset, he's not getting uptight. When people correct you, why don't you just thank them for this?
He's right 100% in his post, and then instead of acknoledging it, you call him "upset"and "uptight"..

What do you call it then when someone says this: " I got sick of hearing them use the wrong terminolog" Well, excuse us, if we use the wrong terminology. Not everyone knows the name of each tool for gawd sake, have some patience with people, including me, that doesn't mean I'm spreading false information, I didn't know the word "spool" was what it called on the outside. Again, I think I am better off getting out of this thread because when I read your posts and some other CI'ers posts I get the sense of being offensive by my respond, So I'll just shut up then.

(Peace out!)

 

[Angel]

Deaf for me is not being able to hear anything when the hearing aid or CI is off. It doesn't matter how you communicate or what mannerisms you have, you are deaf. Just like a black person is still black whether they like classical music or rap, live in North Dakota or Harlem.

For me a hard of hearing person can hear a bit with the hearing aid off but may struggle somewhat. I've never felt I was HOH since I can't hear anything softer than the loud slam of a door with my hearing aids off.

good definition there