Missing or Malformed Cochlea's

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kjvitek

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Does anyone have deafness due to missing or malformed cochleas? My 5 month old daughter is missing her cochlea in the left side and just the start of one on the left. I havent read very much on this in any of my searches and I am curious to meet someone who also has this condition or knows about it. Thanks! :wave:
 
I don't have that problem but I do know someone who has small cochlea. He is not on AD at all. Sorry. I hope you do find someone.
 
kjvitek said:
Does anyone have deafness due to missing or malformed cochleas? My 5 month old daughter is missing her cochlea in the left side and just the start of one on the left. I havent read very much on this in any of my searches and I am curious to meet someone who also has this condition or knows about it. Thanks! :wave:
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You might consider joining a Yahoo group for parents of children with a hearing loss. It is called Listen Up

Yahoo! Groups
 
My son has a malformed cochlea in one ear. It was the cause of a CSF leak that turned into spinal menengitis which caused deafness in his other ear. The ear with the malformed cochlea was packed to prevent further CSF leaks. He is now profoundly deaf.
 
oh wow, you may ask CI center if shes candidate for ABI (auditory brainstem implant) its fairly sucessful but not as great as other hearing assistance device. or you can just let her learn sign language, dont listen to professional if they advised against sign language this girl have no cochleas! anyways I dont know anyone with that condition but my fiance jason met one man with that condition he uses sign language, no ABI or anything just uses vibration like dog barking, music, etc
 
Rockdrummer, does you son have hearing aids or does he use sign language? How old is if I can ask you that. And also, is he eligible to do cochlear implants? Thank you everyone.
 
kjvitek said:
Rockdrummer, does you son have hearing aids or does he use sign language? How old is if I can ask you that. And also, is he eligible to do cochlear implants? Thank you everyone.
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No hearing aids. The ear with the malformed cochlea is packed. Even prior to that they don't believe he had any useful hearing from it and certainly not after the bout with meningitis and then packing it. The other ear was hearing prior to meningitis but afterwords the hearing loss was profound and aids would be of no benefit. Based on many factors we did decide to opt for a CI but the surgeon did not perform the procedure correctly the first time and there was no benefit. Ossification set in and a second dual array CI was attempted but with no benefit either. He was 18 months old when this happened. He is 13 now. All along we have been signing with ASL and SEE and whatever works.
 
Im sure it was rough to go through all of that. I am glad things have seemed to work out now with sign language. I hope there is a possibility of a ci for my daughter but that seems doubtful. Thank you for sharing your story with me.
 
kjvitek said:
Im sure it was rough to go through all of that. I am glad things have seemed to work out now with sign language. I hope there is a possibility of a ci for my daughter but that seems doubtful. Thank you for sharing your story with me.
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You are welcome. If I were you I would start with sign language now regardless of any decisions for HA's or CI. Start signing now!
 
I hope there is a possibility of a ci for my daughter but that seems doubtful.
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Maybe in the malformed cochlea that might be an option.....but I think your daughter will prolly get an ABI (auditory brainstem implant) You may have to go to a speciality (ENT) hoisptial, since most docs won't be familiar with them.
 
Missing cochleas

I know a child with no cochlears who is profoundly Deaf. His first language is British Sign Language, and he's also responding very well to Cued Speech in order to help with English (mainly literacy, but speech too as far as he's able). He has a Bone Anchored Hearing Aid, which seems to give him a little bit of sound, though he hasn't had it for long enough for us really to be able to tell how much yet.
 
We found out this week that my 10 month old grandson has no cochlea in hos right ear. He also has profound hearing loss in his left ear. Decisions will be made in December as to whether he will need an implant. On observation he does seem to make quite varied vocal sounds, more so than a few months ago.
 
I find that interesting too, because for my daughter I have been told that she will stop making oohs and so on after 4-6 months. She is 6 months now and everyday she continues to make new noises and sounds. The infant hearing program says that a deaf baby stops because she hasnt heard the noise to repeat it. And up until this point it is just natural for babies to make a few noises. Please let me know how it goes for your Grandson. Does he have a hearing aid right now? I have our first implant meeting this month, so far her other doctors believe she is a candidate for a straight implant opposed to curved since she has no cochlea. She does have a open cavity where the cochlea should be.
 
kjvitek said:
I find that interesting too, because for my daughter I have been told that she will stop making oohs and so on after 4-6 months. She is 6 months now and everyday she continues to make new noises and sounds. The infant hearing program says that a deaf baby stops because she hasnt heard the noise to repeat it. And up until this point it is just natural for babies to make a few noises. Please let me know how it goes for your Grandson. Does he have a hearing aid right now? I have our first implant meeting this month, so far her other doctors believe she is a candidate for a straight implant opposed to curved since she has no cochlea. She does have a open cavity where the cochlea should be.
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Have you started signing? You should do so regardless of any decisions for using technology.
 
My daughter is almost 2 now, and she was able to get the CI in October of 2010. She is making progress and at each mapping her ranges are expanding. She has even starting making a few new sounds! We are signing with her also, she does well with it. Thank you everyone!
 
kjvitek said:
My daughter is almost 2 now, and she was able to get the CI in October of 2010. She is making progress and at each mapping her ranges are expanding. She has even starting making a few new sounds! We are signing with her also, she does well with it. Thank you everyone!
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So wonderful! What an exciting time this must be, I'm sure you'll see her bloom with access to two lovely languages.
 
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