Reimplantation and Malformed Cochlea...

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MomToDeafChild

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Anyone or anyone's child have a malformed cochlea and get reimplanted? Did you (or your child) get back to the level you were at with the first one, and how long did it take?

My daughter is 7 and was implanted in 2001 with the CII and did well with it. She has a malformed cochlea (less than one turn in her implanted ear). 5.5 yrs later she contracted her 2nd ever ear infection, which turned out to be strep pneumo and hard to kill, and her CI hearing disappeared right along with it. The doctors believed it to be auditory nerve damage caused by a toxic strain of bacteria, and she was only the 3rd case of this ever happening that they could find. We waited for the auditory nerve to bounce back on it's own, but it didn't. We decided to reimplant to see if that would change anything. We were hoping for an implant failure, because there's no coming back from auditory nerve death. The doctors were not optimistic, but it was the only way to know for sure.

She had her surgery on 6/25, and reactivation was today. Amazingly she heard! Talk about the unexpected! I wouldn't let myself go into this appointment thinking it would work because I knew that was setting myself up for disappointment. So this was a shock! In the sound booth, she responded to the following: Buh sound at 30 db, Ahh and Ooo sounds at 35db, and Mmm and Sss at 40db. A normal audiogram for her would have been around 35db across the board, so that is acutally pretty good!

Discrimination is extremely poor, however, though this can be from several factors: newer technology, no audiotory input for almost 6 months, and the new electrode array being in a different spot with different areas being stimulated than before. I've been told it will take time for the brain to adjust to the new implant and am prepared to work for it, but was wondering what people's experiences with reimplantation were and how long they took to adapt, and if it was better or worse than before. I hadn't investigated this before because everyone was so sure it wouldn't work...
 
OH WOW! That is great news that she heard!! I can only imagine you are just beside yourself. I wish you guys the best of luck this time around.


MomToDeafChild said:
Anyone or anyone's child have a malformed cochlea and get reimplanted? Did you (or your child) get back to the level you were at with the first one, and how long did it take?

My daughter is 7 and was implanted in 2001 with the CII and did well with it. She has a malformed cochlea (less than one turn in her implanted ear). 5.5 yrs later she contracted her 2nd ever ear infection, which turned out to be strep pneumo and hard to kill, and her CI hearing disappeared right along with it. The doctors believed it to be auditory nerve damage caused by a toxic strain of bacteria, and she was only the 3rd case of this ever happening that they could find. We waited for the auditory nerve to bounce back on it's own, but it didn't. We decided to reimplant to see if that would change anything. We were hoping for an implant failure, because there's no coming back from auditory nerve death. The doctors were not optimistic, but it was the only way to know for sure.

She had her surgery on 6/25, and reactivation was today. Amazingly she heard! Talk about the unexpected! I wouldn't let myself go into this appointment thinking it would work because I knew that was setting myself up for disappointment. So this was a shock! In the sound booth, she responded to the following: Buh sound at 30 db, Ahh and Ooo sounds at 35db, and Mmm and Sss at 40db. A normal audiogram for her would have been around 35db across the board, so that is acutally pretty good!

Discrimination is extremely poor, however, though this can be from several factors: newer technology, no audiotory input for almost 6 months, and the new electrode array being in a different spot with different areas being stimulated than before. I've been told it will take time for the brain to adjust to the new implant and am prepared to work for it, but was wondering what people's experiences with reimplantation were and how long they took to adapt, and if it was better or worse than before. I hadn't investigated this before because everyone was so sure it wouldn't work...
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yay! i'm glad she heard!!!!! Are you still continuing with the ASL intervention that you spoke about a few months back? I really really think that it's helpful for almst ANYONE with any type of hearing loss (including unilateral loss) to have Sign in their toolbox.
 
There are several papers on PubMed regarding reimplantation. The general consensus is that the majority of reimplantation cases regain pre-implant levels of hearing within 12 months.

Cochlear Reimplantation: Causes of Failure, Outcom...[Laryngoscope. 2007] - PubMed Result

(a brand new paper coming out this month, hadn't even seen this one before)

Cochlear implant failures and revision. [Otol Neurotol. 2005] - PubMed Result

Revision cochlear implant surgery: causes and outc...[Otolaryngol Head Neck Surg. 2004] - PubMed Result

Sheri
 
Oh I almost forgot..........another good reason to continue with the Sign, even thou reimplantation outcomes are good, is that she might need a 'terp in higher grades as the work gets harder. I know that many oral sucesses start out doing awesome in elementary, but then plautuo (sp?) as the work gets harder. That could be a reason why orally trained kids don't have as high acheivement rates as some may be prejudicated to think.
 
We are absolutely keeping with sign. For all the bad that happened this year, moving her into a TC program was the best thing for her. I actually wish she had started out kindergarten there instead of the mainstream. It sucks that she has to go to school an hour away, but it's worth it.

Our school district really has no services for deaf children (she was the only one), and while she did well enough in the mainstream and was nowhere near the bottom of the class, I felt she could have been doing better. She has some auditory processing issues in addition to the deafness (possibly from a stroke that was the result of bacterial meningitis in 2004) and I never felt they really addressed those.

After she lost her hearing in February, I was able to see just how little our school knew how to deal with deafness. I really feel that they just let her sit in the corner by herself and didn't interact with her because 'she couldn't hear them anyway'. They just made NO effort at all to include her. They would send home papers that they did during the day, and there would just be a note scribbled on the top 'She couldn't hear', which to the teacher meant she couldn't do! And the entire time she was there and not hearing I BEGGED them to please send home info on what they did during the day (they should have been doing this anyway; it's in the IEP) so I could do it with her at home, and not ONCE did they do that!

I couldn't get her out of there fast enough! The new school has an amazing support staff and I can't say enough good things about them. The communication is phenomenal. She only started in there for the last marking period, and when we had her IEP meeting for next year, I wasn't even sure they were going to say she could move on to 1st grade (I knew she was doing well there, but you never know HOW well until something like this).

Not only is she ready for 1st grade, she is already at an advanced 1st grade reading level and doing well in math too. And she only really started reading when she switched schools! She has lots of friends (socially she has always been very shy). She is going to be in the mainstream again (we didn't think she would ever get back there), with an interpreter, and is only in the resource room for 7% of her time for speech and to see the TOD. We made the IEP based on her NOT hearing again, so I don't know how they will want to change things, but from everything I've heard so far it is going to be a while for her to get back to the level of hearing she had with the first CI, maybe a year or more (and that's if she can get back there at all). Regardless, I am happy where she is.
 
My school district was the same way. I was the only deaf girl. My parents wanted me to learn how to sign but when I got mainstreamed the school felt I could do better without learning how to sign. It was not until late high school that I got any help, such as note taking and etc. To this day, I still have not met anyone else that is deaf.
 
Too many teachers out there in the public schools really do not have a clue how to work with deaf children which is why we are still seeing problems like these. Even teachers with a degree in special ed do not have the knowledge of deaf ed. I have a BA in special ed and only deaf ed was covered in 1 lecture while with my MA in Deaf Ed...all lectures in ALL my classes in the 2 years of the program were about deaf education, deaf children, audiograms, and anything else that is related to deafness. I realized how little I knew with just my special ed degree so if the teachers are basing their degrees in special ed only as the experts of knowing what's best for deaf/hoh children, I will laugh at their faces.

It is apparent that those teachers at those schools that u all mentioned do not know anything about teaching deaf/hoh children.

I would suggest to the parents that if u are going to mainstream your children, find or demand teachers who have creditals or degrees in deaf education if possible to work with your children.
 
Momtodeafchild,

I'm glad for you that the re-implantation has had initial success, despite your low expectations. It does seem from the papers that Sheri has cited that the overwhelming majority of re-implantations have good results. It was also interesting to note that there are fewer failures with the later generation of implants, which is an encouraging trend.

I think your daughter's case is a good illustration of the benefit of being able to sign with the child. And your daughter seems to have done well at the new school :)
 
For all the bad that happened this year, moving her into a TC program was the best thing for her. I actually wish she had started out kindergarten there instead of the mainstream. It sucks that she has to go to school an hour away, but it's worth it.

Our school district really has no services for deaf children (she was the only one), and while she did well enough in the mainstream and was nowhere near the bottom of the class, I felt she could have been doing better.
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Well then, wasn't that really fortituous that she lost her hearing and you guys found out how good a school with a TC program can be?
Is there any way you could do a split placement? I know that the TC program is an hour away, but maybe she could split the week between attending the TC program and getting mainstreamed? Is the TC program one of those self contained dealies? Is there any way she could go to school in that district?
You could argue that your daughter was really slipping throuh the cracks at her orgional school. That's one issue that a lot of pro-mainstreamers don't tell you, that most mainstream schools really aren't set up to educate dhh kids. Most of the time, all you get are teachers who are experts on LD with very little experiance with kids with more classic disablities.
Let your daughter lead the way education wise.
 
deafdyke said:
Is there any way you could do a split placement? I know that the TC program is an hour away, but maybe she could split the week between attending the TC program and getting mainstreamed? Is the TC program one of those self contained dealies? Is there any way she could go to school in that district?
You could argue that your daughter was really slipping throuh the cracks at her orgional school. That's one issue that a lot of pro-mainstreamers don't tell you, that most mainstream schools really aren't set up to educate dhh kids. Most of the time, all you get are teachers who are experts on LD with very little experiance with kids with more classic disablities.
Let your daughter lead the way education wise.
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I guess I didn't write about her placement correctly. Maybe I am calling the program by the wrong name. Around here, Kindergarten is half day. In our district she was in a regular, mainstream Kindergarten and was only pulled out for speech and the TOD. The teacher knew nothing about deaf children.

When she lost her ability to hear with her CI in February it became apparent that the mainstream was not going to work. She had done well, and most parents would have been thrilled with that, but I had concerns already what would happen as she got older. And because the teacher refused to make any accommodations (she insisted Abby could 'hear' her), it was imperative that we move her out.

We moved her to a neighboring IU with a great support staff. She spent half the day in their mainstream K program, but with an intrepeter this time, and then the other half of the day in the resource room with the TOD. She also had her speech services in there. There were only 4 students in the resource room when she was in there from K-2nd grade.

I wondered how they would want to do 1st grade, since 1st grade is all day. I thought maybe they would pull her into the mainstream class for core subjects and the rest of the time would be spent in the resource room. Instead, they feel she should be in the mainstream 1st grade class (with an intrepeter) all day! She will be pulled out several times a week for speech and TOD services. The great thing about THIS school is that all of the support staff are IN The school (the TOD in our SD is itinerant), so they are available any time she needs them.

With this placement, she will continue to learn sign, but will still be in the mainstream.
 
MomToDeafChild said:
We are absolutely keeping with sign. For all the bad that happened this year, moving her into a TC program was the best thing for her. I actually wish she had started out kindergarten there instead of the mainstream. It sucks that she has to go to school an hour away, but it's worth it.

Our school district really has no services for deaf children (she was the only one), and while she did well enough in the mainstream and was nowhere near the bottom of the class, I felt she could have been doing better. She has some auditory processing issues in addition to the deafness (possibly from a stroke that was the result of bacterial meningitis in 2004) and I never felt they really addressed those.

After she lost her hearing in February, I was able to see just how little our school knew how to deal with deafness. I really feel that they just let her sit in the corner by herself and didn't interact with her because 'she couldn't hear them anyway'. They just made NO effort at all to include her. They would send home papers that they did during the day, and there would just be a note scribbled on the top 'She couldn't hear', which to the teacher meant she couldn't do! And the entire time she was there and not hearing I BEGGED them to please send home info on what they did during the day (they should have been doing this anyway; it's in the IEP) so I could do it with her at home, and not ONCE did they do that!

I couldn't get her out of there fast enough! The new school has an amazing support staff and I can't say enough good things about them. The communication is phenomenal. She only started in there for the last marking period, and when we had her IEP meeting for next year, I wasn't even sure they were going to say she could move on to 1st grade (I knew she was doing well there, but you never know HOW well until something like this).

Not only is she ready for 1st grade, she is already at an advanced 1st grade reading level and doing well in math too. And she only really started reading when she switched schools! She has lots of friends (socially she has always been very shy). She is going to be in the mainstream again (we didn't think she would ever get back there), with an interpreter, and is only in the resource room for 7% of her time for speech and to see the TOD. We made the IEP based on her NOT hearing again, so I don't know how they will want to change things, but from everything I've heard so far it is going to be a while for her to get back to the level of hearing she had with the first CI, maybe a year or more (and that's if she can get back there at all). Regardless, I am happy where she is.
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I wish you all the luck with the reimplantation. And I want to commend you on the decision to move to a TC program. It is essential in helping to prevent any furher delays occuring while she is readjusting to the new CI. You have unfortunatley gotten the bitter taste of what the mainstream is like for too many kids. You can see why so many of us here feel it is usually not the best placement for a deaf child. Keep us informed on your daughter's progress.
 
contradica said:
My school district was the same way. I was the only deaf girl. My parents wanted me to learn how to sign but when I got mainstreamed the school felt I could do better without learning how to sign. It was not until late high school that I got any help, such as note taking and etc. To this day, I still have not met anyone else that is deaf.
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Wow! That is too sad!
 
She will be pulled out several times a week for speech and TOD services. The great thing about THIS school is that all of the support staff are IN The school (the TOD in our SD is itinerant), so they are available any time she needs them.
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Oh so the TC program is more of a "magnet" school for dhh kids? That sounds awesome! It's too bad someone hasn't designed a program where kids with disabilities don't need to be pulled out. I had a full plate of theraputic services (like speech, OT and PT) and it was so hard to juggle everything........I always wished I could attend a school or a program where things like speech therapy were automaticly built into the day.
Oh, and I definitly think that ASL and Deaf Culture exposure can happen outside of school. Have you contacted the School for the Deaf? What about your state's branch of NAD? You should ALSO join the American Society for Deaf Children. It's a great organization for parents of kids who Sign and speak as well.
Oh, and I think my best advice to you is to be openminded and flexiable about school placement. The magnet school sounds awesome! Keep her there for a few more years, so she's got the foundation, and then maybe explore other options. It's good that you found out that the TC program was better then regular classes with minimal accomondations early on. Especially since a lot of girls tend to have social and school issues around jr high age.
 
Here's a link for American Society for Deaf Children: American Society for Deaf Children
It's FAR FAR better then AG Bell. I know that AG Bell is supposdely more open to Sign and non mainstreaming then it used to be, but it does seem to be mostly made up of VERY high acheiving oral onliers.
 
Oh I see you're in PA. How far are you from Pittsburgh? Western PA School for the Deaf is supposed to be one of the BEST schools for the Deaf in the nation!
Western Pennsylvania School for the Deaf
I know off the top of my head that PA tends to be one of the states where specialized schools tend to be a lot better then mainstream schools.
(have friends from PA who are currently experiancing and who have experianced the mainstream sped thicket)
There's also: The Pennsylvania School for the Deaf
There is another school for the Deaf in Scranton, but their site seems to be down now grrrrrrrrrrrrr...........
I know you're very happy with your daughter's current program, and that's AWESOME! However the schools for the Deaf can really really help you with resources and supplemental stuff (like maybe they would allow your daughter to do after school stuff, and summer camps) Also, the time may come when your girl wants to go away to school. Please check them out.........and yes, I know the stereotype of poor acadmics at deaf schools, but their early education programs tend to be really top notch, and something you generally can't find in the mainstream. Also WPSD is very very good academicly (it's NOT like Western PA School for the Blind, which is mostly for severely multihandicapped kids)
 
jillio said:
Wow! That is too sad!
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Personally, I do not view it as sad. I played the hand that I was dealt. I was just forced to focus and concentrate on the language that I showed a preference to. My options were limited but it was not necessary distressing. I turned out fine.
 
contradica said:
Personally, I do not view it as sad. I played the hand that I was dealt. I was just forced to focus and concentrate on the language that I showed a preference to. My options were limited but it was not necessary distressing. I turned out fine.
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I'm glad that you don't have a problem with it. But, not neccesarily directed at you, I do find it sad that any deaf child's options would be limited, and that "force" has anything to do with language acquisition. Just a question, though--and this isn't intended as rude, but I am curious--if you were not exposed to any sign, how is it that you know that your prefrence was for oral. In order to have a preference, one has to ahve an option to compare it to.
 
jillio said:
I'm glad that you don't have a problem with it. But, not neccesarily directed at you, I do find it sad that any deaf child's options would be limited, and that "force" has anything to do with language acquisition. Just a question, though--and this isn't intended as rude, but I am curious--if you were not exposed to any sign, how is it that you know that your prefrence was for oral. In order to have a preference, one has to ahve an option to compare it to.
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Not that this was directed at me, lol, but I don't think there are too many people who get to experience sign and speech in absolutely equal amounts right from the very beginnning to ever be able to have an unbiased comparison.

If oral is what you started out with, I think it's natural that your preference would be for the familiar. Same thing goes with sign. If you started out with sign, it would be natural to gravitate towards what you know. So by the time you DO have exposure to both, you would most likely be biased towards what you are used to over the new.
 
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