Brainstem Implant

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Cejow

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I was wondering if anyone knew where I could get some more information on the Auditory Brain Stem Implant. I found a couple of site but they are just explaining the procedure not the risks or anything about the qualifications for it. My son had an infection that destroyed the ear canal, middle ear, inner ear and some of his skull. We were hoping for the coghlear implant to make his life a little easier but that is no longer an option from the sounds of the doctor. I was looking for another option. He has so many problems as it is, we were hoping something would help him hear.
He is mentally and physically disabled, visually impaired, deaf, and has various other problems. But the good news is he knows about 15 different signs now. :D
Thanks
:fingersx:
 
I have some article collected somewhere. I'll try to find them and pass them on to you. Might take a while.
I got the from the WWW, so maybe you allready have them. We'll see.

Keep on signing. Like speech, understanding goes quick. It takes a lot of signs before it is repeated.

Cloggy
 
Just wanted to wish you the best as well and hope that the brainstem implant is a more viable option for your son in helping him to hear.
 
Thanks for all the information. :D I appreciate it. I will print it out and take it to the surgeon. I am hoping something can be done just to make his life a little easier. He can understand sign but has a hard time signing do to his physical disabilities. His fine motor skills are that of about a 3 month old. Here's a pic of him incase y'all wanted to see him. :D He's my little angel. :angel:
 

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Cejow said:
Thanks for all the information. :D I appreciate it. I will print it out and take it to the surgeon. I am hoping something can be done just to make his life a little easier. He can understand sign but has a hard time signing do to his physical disabilities. His fine motor skills are that of about a 3 month old. Here's a pic of him incase y'all wanted to see him. :D He's my little angel. :angel:
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Beautiful.
Regarding "taking info to the surgeon" it should be the other way around. He/she should be able to inform you. If he cannot he probably is no good.
He/she should be able to explain to you how it all works. If you don't understand, ask again.
The info found on the WWW should help you to orient beforehand and prepare for questions....

Good luck.
 
Silas see ENT at Nemours Children's Clinic and for the ear infection that destroyed his ears we had to go to Mayo Clinic. I am hoping either his surgeon or the Mayo will be able to do this even if it means when he gets older.
 
He is mentally and physically disabled, visually impaired, deaf, and has various other problems.
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I don't know much about your son and how mentally disabled he is but no offense, I fail to see how the implant would benefit him. It just upsets me that you would even think about it considering that brainstem implant is more dangerous than a cochlear implant and the odds of him making a use out of it is nil - may detect sounds but that's about it and that is NOT a good reason for it. And that he has a history of infection in various places indicates that he should NOT get an implant.

I have a CI myself and I love it but if I have a child who's both *mentally and physically* disabled with a history of infection, I would rather just let him be that way than to implant with a brainstem implant. Why not JUST ACCEPT the way he is?
 
netrox said:
I don't know much about your son and how mentally disabled he is but no offense, I fail to see how the implant would benefit him. It just upsets me that you would even think about it considering that brainstem implant is more dangerous than a cochlear implant and the odds of him making a use out of it is nil - may detect sounds but that's about it and that is NOT a good reason for it. And that he has a history of infection in various places indicates that he should NOT get an implant.

I have a CI myself and I love it but if I have a child who's both *mentally and physically* disabled with a history of infection, I would rather just let him be that way than to implant with a brainstem implant. Why not JUST ACCEPT the way he is?
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:gpost:
It is very important to get an idea of the benefits... Don't be afraid to ask!
Have you met any other children like your son?
 
netrox said:
I don't know much about your son and how mentally disabled he is but no offense, I fail to see how the implant would benefit him. It just upsets me that you would even think about it considering that brainstem implant is more dangerous than a cochlear implant and the odds of him making a use out of it is nil - may detect sounds but that's about it and that is NOT a good reason for it. And that he has a history of infection in various places indicates that he should NOT get an implant.

I have a CI myself and I love it but if I have a child who's both *mentally and physically* disabled with a history of infection, I would rather just let him be that way than to implant with a brainstem implant. Why not JUST ACCEPT the way he is?
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I'm a CI recipent myself and I think netrox brings up a very valid point...

As I understand it, the ABI is typically only considered for people with these neuralogical tumors growing on the cochlear nerve itself. I'm not sure about other types of situations (like a missing cochlear nerve). It is also more of a crapshoot in terms of positive results as the area where to put the endings of the device is very small is often a hit or miss affair. They had an article in Reader's Digest about a woman who did have a CI but these tumors essentially destroyed her cochlear nerve and they then tried the ABI. She seemed to be doing well with it. Still somewhat experimental to say the least...
 
Silas had an infection so bad in his ears it destroyed everything, even part of his skull. He has no ear canals, no middle ear, inner ears, and they had to the nerve is damaged beyond repair.
As for his disabilities my husband and I are looking to make his life a little easier. When he had his bone conductor aids, he learned to speak a little. He still surprises me by saying mama and dada. He had them for about 6 months before he wouldn't wear it anymore and ENT in Milwaukee said quit using them they weren't working. IT took 3 years but when we finally got back here to Florida, I talked to his original ENT and he immediately ran a CT scan and then an MRI a week later to get a better look and then about 4 days later we were told to go to the doctor's office and there was a surgical team waiting on us. They told us what they found and they had the specialist from the Mayo clinic come over to talk with us also.
I love my son more than anything and am trying to do the best for him. I DON'T have a problem accepting him how he is and how dare you Netrox assume that!!!!!!!! If you knew everything he has had to go though and we have had to go through with him you would understand. If Milwaukee would have checked they would have saved what he had but they didn't the infection went on for almost 4 years!!!!!!!!!!! They told us that after they sent everything to the lab and got results. We were told by neurology we are lucky he isn't dead!!!!!!!!!
 
Good info,

Netrox was just giving input based on your previous info, so as allways assumptions are made... There's nothing wrong with that and in fact it caused you to give additional info.

Good to read that he responded with the bone conductor aids. That does give hope for this procedure.

Cloggy
 
Cloggy said:
:gpost:
It is very important to get an idea of the benefits... Don't be afraid to ask!
Have you met any other children like your son?
Click to expand...


No I haven't met anyother children like my son. At last count according to the geneticist there are only about 13 kids in the US and about 200 worldwide woth my son's exact disorder. It's 18 Ring Chromosome. All I was wanting was more information before I go talking to the doctors and surgical teams about it. I found some good information on it thanks to you. :D Just trying to help my son.
 
Cejow said:
No I haven't met anyother children like my son. At last count according to the geneticist there are only about 13 kids in the US and about 200 worldwide woth my son's exact disorder. It's 18 Ring Chromosome. All I was wanting was more information before I go talking to the doctors and surgical teams about it. I found some good information on it thanks to you. :D Just trying to help my son.
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You're doing great...
 
Cejow.......is there a Ear and Eye Hoispital near you? As you know with Chromosome 18, the medical problems tend to be REALLY rare. We tend to have to see doctors who are hyperspecialized. There is a really good doc up here in Boston, named Dr. Eavey who is THE Dr. Spock of the pediatric ENT would!
Actually Cloggy and netrox, I have a related syndrome (speaking of which, Cejow....your son looks EXACTLY like a little boy w/ Ring 18 I've met at the conferences) and I think that in cases where the child is very affected that it's worth it. Who knows? Maybe he'd get enough benifit from the ABI that he might not be as MR as the experts think! Remember, until recently a LOT of hoh kids were thought to be MR.
 
deafdyke said:
......Actually Cloggy and netrox......Maybe he'd get enough benifit from the ABI that he might not be as MR as the experts think! Remember, until recently a LOT of hoh kids were thought to be MR.
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He responded to the bone conductor aids so, like I wrote above, that does give hope for this procedure.

I'm not familiar with this. Glad you can shed some more light on it deafdike.
 
deafdyke said:
Cejow.......is there a Ear and Eye Hoispital near you? As you know with Chromosome 18, the medical problems tend to be REALLY rare. We tend to have to see doctors who are hyperspecialized. There is a really good doc up here in Boston, named Dr. Eavey who is THE Dr. Spock of the pediatric ENT would!
Actually Cloggy and netrox, I have a related syndrome (speaking of which, Cejow....your son looks EXACTLY like a little boy w/ Ring 18 I've met at the conferences) and I think that in cases where the child is very affected that it's worth it. Who knows? Maybe he'd get enough benifit from the ABI that he might not be as MR as the experts think! Remember, until recently a LOT of hoh kids were thought to be MR.
Click to expand...


He tends to know alot about things. I don't think he is as handicapped mentally as they think. He loves taking things apart and putting them together again. Not to mention he knows where things are and how to get himself his own things at times. I am trying to get him to come get me. lol. But I guess pudding and yogurt is better if you get it yourself. :whistle:
As for an eye and ear hospital near here the only thing we have is the children's hospital downtown. I know he sees only the doctors downtown not any here on the Naval Base. They say he is too complicated to deal with. I know Dr. Lundy, from the Mayo, is the best in this region for ENT. He sees genetics, cardiology once a year, opthalmology, pulmonology (did I spell that right), OT,PT, Speech, urology, and every other ology's down town.
We haven't been to any of the comfrences yet. Hopefully next year. We are saving up for it. We were going to go one year but found out I was pregnant with my twins. So we didn't make it and until recently with them so little we haven't had a chance to go. So hopefully next year. :)
 
We haven't been to any of the comfrences yet. Hopefully next year.
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Well I AM definitly gonna be there since my mom's hosting it! REALLY looking forward to this one, since it's at Disneyland!
Do you think you could get a referal to a ENT doc or hospital? B/c I think that you would probaly need to go that route. An ABI is pretty unusual (ie not as common as hearing aids or CI.....and I mean it's probaly rarer then rare in the pediatric ENT world) I mean I remember when I went to see Dr. Eavy for the canalplasty, he was so fascinated by my ears.
That's a good sign that he understands sign and speaks a little!
 
deafdyke said:
Do you think you could get a referal to a ENT doc or hospital? B/c I think that you would probaly need to go that route. An ABI is pretty unusual (ie not as common as hearing aids or CI.....and I mean it's probaly rarer then rare in the pediatric ENT world) I mean I remember when I went to see Dr. Eavy for the canalplasty, he was so fascinated by my ears.
That's a good sign that he understands sign and speaks a little!
Click to expand...

I am waiting for the new referral to go through.
It's funny you say that about the ears :laugh2: Silas has been a wonder since he was born also. ENT's were so fascinated by his ears. Couldn't see the ear drum and on the scan it showed he didnt' have any. They couldn't believe it. I think we saw about 5 ENT's here until we finally found one then we had to move to IL and that's where he was sent to Milwaukee. Then I could go on about his geneticist, that was hilarious. It wasn't until like 4th time the blood work came back he believed the reports about the 18 Ring. I think the funniest thing (now not then) was when I ask him what can we expect with this? He said ummmmmmm I dunno. Never seen this before. The 4 words you never want to hear from a doctor. :Ohno: But both he and I got on the internet and started looking. There was nothing in his genetics book either.
I was glad when we found the research group though. Finally had some information.
 
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