"Ears Off Please"

ContessaC

ContessaC

New Member
Joined
Sep 12, 2012
Messages
93
Reaction score
0
Hey there guys/gals

I know its been a while since last I checked in...so "hello"...

Anyway, jumping right into the "issue" - as previously mentioned in other posts. My son Conner has a CI - the first surgery was botched thus creating scar tissue and interfering with the 2nd one functioning properly. We've done the mapping, the therapy and can only conclude that it does not work.

Does this bother me? Yes! It bothers the hell out of me that the 1st surgeon cut into my kids head and didn't know what the heck she was doing apparently! It bothers me that he had to go through the pain of being implanted with a hunk of metal that did nothing but cause him pain. It bothers me most of all that I left my husband talk me into allowing him to get it done AGAIN!

Now here is the decision...according to his ENT he is "hearing" sounds (per her computers and such) but from what I can see and observe (as well as his school and teachers) he isn't benefiting from the implant at this time. So, here's the rub...Conner doesn't want to wear the processor. He tells me "no, please" every time I go to put it on him. Lately he's been removing his processor, putting it back in the cradle and signing "ears off please" and then all done and walking away. I am not 100% sure if he is hearing and doesn't like it, or he just doesn't want to wear the processor. Should I let him choose his way in this? Or should I assert my parental authority and force him to wear the processors?

Conner's signs have grown like CRAZY! He is doing super well!!!! I am very proud of his progress and my own. I'm currently taking private ASL lessons with a tutor at home and taking an online ASL college class and LOVING it. Though by no means even close to being proficient I love being able to communicate with Conner. And he loves to help me :) We do our flash cards every day - its our thing. <3

I would love some input from the group. My husband and I are kinda split down the middle. Me? I frankly don't care if he never chooses to use the processor again...if he's happy and healthy. The hubby feels that we should force him to hear, and in the long run it will benefit him.

Thanks in advance...
 
And because I'm so proud....here he is <3
Conner-Iloveyou_zps463d3fc2.jpg
 
ContessaC said:
Hey there guys/gals

I know its been a while since last I checked in...so "hello"...

Anyway, jumping right into the "issue" - as previously mentioned in other posts. My son Conner has a CI - the first surgery was botched thus creating scar tissue and interfering with the 2nd one functioning properly. We've done the mapping, the therapy and can only conclude that it does not work.

Does this bother me? Yes! It bothers the hell out of me that the 1st surgeon cut into my kids head and didn't know what the heck she was doing apparently! It bothers me that he had to go through the pain of being implanted with a hunk of metal that did nothing but cause him pain. It bothers me most of all that I left my husband talk me into allowing him to get it done AGAIN!

Now here is the decision...according to his ENT he is "hearing" sounds (per her computers and such) but from what I can see and observe (as well as his school and teachers) he isn't benefiting from the implant at this time. So, here's the rub...Conner doesn't want to wear the processor. He tells me "no, please" every time I go to put it on him. Lately he's been removing his processor, putting it back in the cradle and signing "ears off please" and then all done and walking away. I am not 100% sure if he is hearing and doesn't like it, or he just doesn't want to wear the processor. Should I let him choose his way in this? Or should I assert my parental authority and force him to wear the processors?

Conner's signs have grown like CRAZY! He is doing super well!!!! I am very proud of his progress and my own. I'm currently taking private ASL lessons with a tutor at home and taking an online ASL college class and LOVING it. Though by no means even close to being proficient I love being able to communicate with Conner. And he loves to help me :) We do our flash cards every day - its our thing. <3

I would love some input from the group. My husband and I are kinda split down the middle. Me? I frankly don't care if he never chooses to use the processor again...if he's happy and healthy. The hubby feels that we should force him to hear, and in the long run it will benefit him.

Thanks in advance...
Click to expand...

How much have you asked him about these issues?
 
Him? As in Conner? - Conner is 5 1/2 and that's pretty much all he says on the matter at the moment as he is just learning ASL - and I'd say in the past...3 months is the first time I've been able to say I am communicating with him.
 
Really cute pic! :)

I wish I could help. I don't know what to post here given that he is 5 1/2 years old. Is he able to tell you if he is hearing anything? The "no, please" makes me sad -- he really must not like wearing it. Was he bilaterally implanted? If not, will a HA work in his other ear?

Love that you guys are coming along with the ASL !!! :D
 
No, he is not bilaterally implanted. Only on his right ear - twice. From what information we've gathered the 1st implant was actually implanted in the WRONG place! Instead of curling around his cochlea it was dangling in his balance well. Causing all sorts of ruckus! And causing him pain. From what the specialist told us - it would be like having a terrible migraine for over a year, non-stop. :(

We know, that NOW it isn't hurting him, and are thinking that the memory of the pain from the first implantation is what is coloring his perception.

Personally? I am 80% sure I want them to take that crap out of my kids head! But refrain from doing so in order not to cause him to have yet ANOTHER surgery.
 
I know 5 1/2 is really young to know what he really wants. If he wears it, does it seem to cause him distress? Will he leave it on for any length of time at school and do they notice any distress? There is that possibility of the "ghost" pain in remembering what he had before. There is also that small small chance that maybe they left something behind with the surgery. Not really wanting to scare, but it is a possibility. Not sure how to check that. I have never had to deal with implants and neither one of my kids ever got one. I'm just trying to think of things to help.
 
He is a cute kid! My brother always fought with wearing hearing aids at the time and finally my mom stopped making him wear them. Now, at 37 years old, he wears them sometimes after 15 years of not wearing them.
 
ContessaC said:
Hey there guys/gals

I know its been a while since last I checked in...so "hello"...

Anyway, jumping right into the "issue" - as previously mentioned in other posts. My son Conner has a CI - the first surgery was botched thus creating scar tissue and interfering with the 2nd one functioning properly. We've done the mapping, the therapy and can only conclude that it does not work.

Does this bother me? Yes! It bothers the hell out of me that the 1st surgeon cut into my kids head and didn't know what the heck she was doing apparently! It bothers me that he had to go through the pain of being implanted with a hunk of metal that did nothing but cause him pain. It bothers me most of all that I left my husband talk me into allowing him to get it done AGAIN!

Now here is the decision...according to his ENT he is "hearing" sounds (per her computers and such) but from what I can see and observe (as well as his school and teachers) he isn't benefiting from the implant at this time. So, here's the rub...Conner doesn't want to wear the processor. He tells me "no, please" every time I go to put it on him. Lately he's been removing his processor, putting it back in the cradle and signing "ears off please" and then all done and walking away. I am not 100% sure if he is hearing and doesn't like it, or he just doesn't want to wear the processor. Should I let him choose his way in this? Or should I assert my parental authority and force him to wear the processors?

Conner's signs have grown like CRAZY! He is doing super well!!!! I am very proud of his progress and my own. I'm currently taking private ASL lessons with a tutor at home and taking an online ASL college class and LOVING it. Though by no means even close to being proficient I love being able to communicate with Conner. And he loves to help me :) We do our flash cards every day - its our thing. <3

I would love some input from the group. My husband and I are kinda split down the middle. Me? I frankly don't care if he never chooses to use the processor again...if he's happy and healthy. The hubby feels that we should force him to hear, and in the long run it will benefit him.

Thanks in advance...
Click to expand...

If he's uncomfortable I would say no. He has to have some say in the matter since it's his body. If he feels better without, there's no reason why he won't live a happy and full life as he is. It sounds like he's already decided too so now his decision needs to be acknowleged.

Laura
 
I hope you share name of hospital where he had first CI so that we would know where to not go for CI.
 
The surgery was at All Children's Hospital in St. Petersburg, FL

I can't give y'all the doctor's name on public forum without first speaking with my attorney...but if you drop me a note (if personally concerned I will share privately)
 
Personally I would refrain from even mentioning that the surgery was 'botched' on a public forum like this until any legal issues are resolved.

It is sad that Conner had to go through all that. Cute little boy you have there. All I can say is that you, as the parent, will have to decide what is best for your boy. Forget what all the medical 'experts' say, forget what everyone outside of your family thinks....do what you think is best. As a parent of a special needs child, I can understand the frustration.
 
I personally would listen to your little boy. There is no way for you to know or hear what he is actually hearing and it could be crazy noise. I wish someone could hear what I hear with and without my CI. Everyone is different and he may be extra sensitive to sound as I am. A normal, regular setting for me on my CI is extremely painful. I know this is me but one never knows. He seems like a smart little boy and I think he will do very well with or without a CI. Best of luck!!!
 
this stories i been told and seen botched up jobs..i would not have one but i adult...he not of an age be objective...so many people say life began when got CI for as many get botch job...i go by your son...your husband maybe see talk to other parents and children without ci...your husband means well but it attitude like that which cause resentment and fear...
little finger and fore finger slap it down on other hand it sign for newyork in south of england and shopping in north of england..one sign two words bsl
 
YOU may be 80% sure but I know I would be 100%. Take that crap out of his head! RIGHT AWAY! Enough! Nice work on the ASL. Keep at it as you need to get some language in him.

He's a beautiful boy for sure.
 
ContessaC said:
No, he is not bilaterally implanted. Only on his right ear - twice. From what information we've gathered the 1st implant was actually implanted in the WRONG place! Instead of curling around his cochlea it was dangling in his balance well. Causing all sorts of ruckus! And causing him pain. From what the specialist told us - it would be like having a terrible migraine for over a year, non-stop. :(

We know, that NOW it isn't hurting him, and are thinking that the memory of the pain from the first implantation is what is coloring his perception.

Personally? I am 80% sure I want them to take that crap out of my kids head! But refrain from doing so in order not to cause him to have yet ANOTHER surgery.
Click to expand...

Yeah, that's what I'm thinking. I think he IS old enough to have a say......and he IS in an enviroment where everyone Signs, and there are quite a few kids who are unaided/unimplanted and exclusively Sign expressively.
 
Angel1989 said:
I personally would listen to your little boy. There is no way for you to know or hear what he is actually hearing and it could be crazy noise. I wish someone could hear what I hear with and without my CI. Everyone is different and he may be extra sensitive to sound as I am. A normal, regular setting for me on my CI is extremely painful. I know this is me but one never knows. He seems like a smart little boy and I think he will do very well with or without a CI. Best of luck!!!
Click to expand...

Based on what Angel says, I wonder if he can turn the volume up and down himself? It may be that what someone else has decided is the right setting for him is not what would work for him if he could choose himself. Just having at least some control may make a real difference in how he feels about wearing it.
 
My friend had the same situation as yours twice on the same place. She told me that when the processor turns on, and it hurt her insdie real bad. i dont know if it were something string to the cochlea. SO she suffered for a year until she fed up with doctor, and asked doctor to fix it. SO they opened her head and took a look at , and found the problem that the string went in the wrong postion that where the string pinched her nerves. PAINFULLY. so they fixed her inner ear, and its fixed. She can able to hear with CI processor turns on. She first got CI when she was teenager.
 
By the way, your son is adorable.

RIght, can't force him to put processor on. BUT ask him if he is in pain about the CI turns on? If he says no, then try to talk to him to see why he does not want it. Needless to say, if you want to continue to take him to a speech therapy. But continue with ASL, of course. Until he can decide to wear his CI eventually or not.

I still wear my HA but I am an ASL user.
 
Back
Top