Guest guest Posted May 19, 1999 Report Share Posted May 19, 1999 In a message dated 5/19/99 7:59:38 PM Eastern Daylight Time, listenup@... writes: << You may want to join ci-circle and post the question on that group. I know there are a number of parents there whose kids have mondini's and have been implanted. Not sure if it was that group or ci-forum, but recently there was a post from someone whose child only had 1 (as I recall) turn to the cochlea, and they posted because their surgeon somehow managed to get a full insertion of the electrodes. >> The surgeon at UNC that specializes in malformed ear parts has never missed full insertion on a Mondini's child! VERY impressive. Some on the CICIRCLE parents have Mondini's kids that were recently implanted. Try that list. Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 1999 Report Share Posted May 19, 1999 >Hello everyone, I need some help.My son has started the evaluation for >the cochlear implant.He has a mondini malformation, and I was told by te >center that his prognosis would not be as good as someone that has a >full cochlea.I was wondering if there are any kids off this list that >have mondini and the implant.How are they doing? From the British Journal of audiology: Cochlear implants and Mondini dysplasia http://www.ent-news.com/vol6_3.dir/cur_lit.dir/article19.html From the archives of Otolaryngology – Head & Neck Surgery : Histopathological Features of a Cochlear Implant and Otogenic Meningitis in Mondini Dysplasia http://www.ama-assn.org/sci-pubs/journals/archive/otol/vol_124/no_4/ocn7084a ..htm (If the above line splits, you will have to cut and paste the 2 lines together) Our son has mild Mondini's, and he's doing very well. He's 3 weeks post hook-up now, and if he's not thinking about it, he can discriminate all the Ling sounds. When he knows he's doing it though, he tries to hard and misses about half of them. He's hearing so many things I never thought he'd be able to hear, like the turn signal blinkers in the car. >Is the benefit they get >enough for speech and hearing? Within 1 week of turn-on, my son's voice was at a normal level (no longer shouting most of the time), his articulation was clearer, he was using his " S " sound more of the time, and I can understand him when he reads to me. Since his hearing mostly slipped out of the range of his hearing aids, he's had to concentrate so hard to make his speech understandable that when he reads out loud and wasn't concentrating on his speech, you couldn't understand him. His pronunciation of many words is better too. For the last year or so he's been pronouncing things as they are spelled. We were told to expect it to take a year or more for our son to reach the level he was at prior to implantation because he did have some residual hearing (but not much). He's already doing better with one hearing aid and the implant than he did with 2 hearing aids. With only the implant he still has a bit of a way to go to get to where he was pre-implant, but not all that far. With hearing aid and implant, I only have to repeat myself a few times a day, and only have to repeat it 1-2 times. Pre-implant, I usually had to repeat myself 3-6 times (not repeating was an exception, not the rule). With implant only, I usually have to repeat myself 5-8 times - but he's only been hooked up 3 weeks. I expect this to get much better. At 2 weeks post hook-up he was tested in the sound booth. With a closed set of words (numbers) his word discrimination was at 90% at 50dB. Since my son is 12 we were told before the implant not to expect too much because older kids often have a difficult time, especially if they were born with the hearing loss. Our son's school helped us talk the implant center into doing the implant. >My son is in an AV program, I need to >know if this will be enough for him to communicate effectively. Each child is different and how your child will respond to the implant depends on a number of different things. >Also, how >clear is these kids speech? My son is extremely intelligible, but then it was before the implant. If you are curious as to how intelligible he is, feel free to call me in the evening (when he'll be home) before Saturday. >Please, any input would be appreciated, I >walked out of the center feeling as there was no hope for my son.His >speech therapist told me not to worry.She said that the implant center >is excellent but they are not very compassionate or caring.She said they >are kind of gloom and doom.My son also has hand deformities which would >limit his use of sign language.So I'm very nervous about him being able >to communicate effectively.Thankyou for any help!!! Because there are so many variables, there are no promises with the cochlear implants. But Mondini's shouldn't rule out an implant. You may want to join ci-circle and post the question on that group. I know there are a number of parents there whose kids have mondini's and have been implanted. Not sure if it was that group or ci-forum, but recently there was a post from someone whose child only had 1 (as I recall) turn to the cochlea, and they posted because their surgeon somehow managed to get a full insertion of the electrodes. They are now waiting for hook-up. Is there maybe another center you could check out? Feel free to contact me if you have further questions. Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 1999 Report Share Posted May 19, 1999 Thankyou Kay! Sherri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 1999 Report Share Posted May 19, 1999 At 07:15 PM 5/19/99 -0400, Sherri Porter wrote: >From: Sherri02@... (Sherri Porter) > >Hello everyone, I need some help.My son has started the evaluation for >the cochlear implant.He has a mondini malformation, and I was told by te >center that his prognosis would not be as good as someone that has a >full cochlea.I was wondering if there are any kids off this list that >have mondini and the implant.How are they doing? Is the benefit they get >enough for speech and hearing? My son is in an AV program, I need to >know if this will be enough for him to communicate effectively.Also, how >clear is these kids speech? Please, any input would be appreciated, I >walked out of the center feeling as there was no hope for my son.His >speech therapist told me not to worry.She said that the implant center >is excellent but they are not very compassionate or caring.She said they >are kind of gloom and doom.My son also has hand deformities which would >limit his use of sign language.So I'm very nervous about him being able >to communicate effectively.Thankyou for any help!!! > Sherri Porter I know a few kids with Mondini's that have CIs. All of them had hearing aids, and all of them had significant shifts in hearing that made their previously effective hearing aids inaffective. Shifts in hearing are common in Mondini's, and CIs are often the only alternative after a major shift. I can't see any distinct trend amongst them. One does very well, mainly because he lost his hearing postlingually. The others are doing about as well, maybe a bit better, then they were doing when they had enough hearing to use their hearing aids. Hope this helps, Chris << Christofer deHahn.................Manager, EDA Systems and Test >> << Quantum Corporation...........Shrewsbury, Massachusetts, USA >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 1999 Report Share Posted May 20, 1999 My niece has a mondini malformation - has had the implant for 5 years and is doing great! She has been mainstreamed since the first grade - her language is fabulous - she is the kind of success we would all like to see happen with the implant. She had her surgery done by Dr. Madox here in Houston - he is now retired - but that was one of his specialties - you might want to find a surgeon who has worked with the mondini malformation.... Amy At 07:15 PM 5/19/99 -0400, you wrote: >From: Sherri02@... (Sherri Porter) > >Hello everyone, I need some help.My son has started the evaluation for >the cochlear implant.He has a mondini malformation, and I was told by te >center that his prognosis would not be as good as someone that has a >full cochlea.I was wondering if there are any kids off this list that >have mondini and the implant.How are they doing? Is the benefit they get >enough for speech and hearing? My son is in an AV program, I need to >know if this will be enough for him to communicate effectively.Also, how >clear is these kids speech? Please, any input would be appreciated, I >walked out of the center feeling as there was no hope for my son.His >speech therapist told me not to worry.She said that the implant center >is excellent but they are not very compassionate or caring.She said they >are kind of gloom and doom.My son also has hand deformities which would >limit his use of sign language.So I'm very nervous about him being able >to communicate effectively.Thankyou for any help!!! > Sherri Porter > > >------------------------------------------------------------------------ >Looking for a new hobby? Want to make a new friend? >http://www.onelist.com >Come join one of the nearly 150,000 e-mail communities at ONElist! >------------------------------------------------------------------------ >All messages posted to this list are private and confidential. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 1999 Report Share Posted May 23, 1999 Sherri, I know of kids who have Mondini's and have done well with the implant, despite partial insertion. Perhaps Cochlear (or Clarion, etc) could give you some stats? The kids I know of were in AV also so that's a similarity, for what it's worth. Cheryl Help > From: Sherri02@... (Sherri Porter) > > Hello everyone, I need some help.My son has started the evaluation for > the cochlear implant.He has a mondini malformation, and I was told by te > center that his prognosis would not be as good as someone that has a > full cochlea.I was wondering if there are any kids off this list that > have mondini and the implant.How are they doing? Is the benefit they get > enough for speech and hearing? My son is in an AV program, I need to > know if this will be enough for him to communicate effectively.Also, how > clear is these kids speech? Please, any input would be appreciated, I > walked out of the center feeling as there was no hope for my son.His > speech therapist told me not to worry.She said that the implant center > is excellent but they are not very compassionate or caring.She said they > are kind of gloom and doom.My son also has hand deformities which would > limit his use of sign language.So I'm very nervous about him being able > to communicate effectively.Thankyou for any help!!! > Sherri Porter > > > ------------------------------------------------------------------------ > Looking for a new hobby? Want to make a new friend? > http://www.onelist.com > Come join one of the nearly 150,000 e-mail communities at ONElist! > ------------------------------------------------------------------------ > All messages posted to this list are private and confidential. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 1999 Report Share Posted May 23, 1999 Thankyou Cheryl, Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 > Hello everyone, I need some help again.My son Robby Porter is 13 months > old and has a CI.We are having alot of trouble keeping it on him.He is > not yet sitting , so it keeps falling off.We hooked an earmold up to the > micraphone, that helps a little, but he still pulls it out.And the > transmitter just keeps falling off.They said they can't give us a > stronger magnet because of risk of infection.If anyone has any > suggestions I would really appreciate it!!!!! Thanks, Just a thought but a simple sweat band would help keep both in place. It needn't be fancy or anything. A strip of fabric should do the trick, but try to figure out a way to fix this so it won't be able to fall down around his neck and choke him. Maybe one way to do this would be to use a bandana instead of a strip, and tie it so it covers the top of his head also. Keep us posted. Hugs, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 Help, worried!! My son(15) has been on 70mcg(35mcg 2x/day) compounded t3 for 2-3 months. He was up to 3 grains which didn't seem to do a thing. Cytomel didn't work out. He hasn't had any problems and has improved. I was going to increase it soon but last night he seemed to go hypert. He woke me up in the middle of the night and was hot, shakey, temp. was over 99, and his pulse was 96. BP was fine. He's still in bed this morning. Not sure what to do? Quote Link to comment Share on other sites More sharing options...
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