Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 I have some questions for those whose children are using Cochlear Implants especially helpful for those whose children are older and were aided first then recieved Cochlear later. My concern is that the cochlear won't be any better than the hearing aids and we put through an unnecessary surgery. He has both sensorineural and conductive loss (profound in right ear and severe in left. He has had to endure 14 surgeries and procedures so far in 7 years and we are about to go through trach reconstruction the end of the month and another growing rod lengthening in Oct. I know that they could do the CI when they do one of the other surgeries but my concern is the success of it. We have had so many people tell us that it is better and so many say that it is nothing more than a glorified hearing aid. When you read the literature it is the same, it depends on who is writing the article. That is why I am looking to the experts those who are using them, not just the doctors, ST, and audi (all who are hearing and have not had to rely on the use of aids or CI). My expectations are not that he will learn to talk. We are almost past the window of acquiring speech (successfully), I am not trying to make him a hearing child (he is Deaf), I want him to have clearer sound not just louder sounds. If only to help him keep safe. Such as: he hears the car coming up behind him when he is walking down the road (He is never outside by himself but he will be some day)or he hears the fire/smoke detector going off. I know that we can have flashing lights for all the alarms and bells at home but not every building has that. That he hears peoples voices not everyone knows he is deaf. I know a couple of children at our school (I work in the D/HOH class grades 1-6)who have CI but they got their implants very early on. Neither is a talker both use ASL. One of the children I know the parents don't follow up on the auditory training so he doesn't respond to his name being called, etc. He does hear the fire alarm and responds to that, but doesn't respond to speech. The other child responds to speech and understands probably 90% of what is said but uses sign because her speech never developed (there are other issue other than just deafness). so please all information, thoughts, ideas that you have would greatly be appreciated. You can email privately so not to tie up the listserv if you wish. Thanks. This is a great place for parents from what I have read so far. Kim in FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 Hi Kim - We have a somewhat different story in that our sons (both are deaf) started out with hearing aids. Tom, my older son who will be 14 on Monday!, wasn't aided until he was 3-1/2 years old - very late. He had a drop in hearing maybe 1-1/2 years ago so we decided to go with an implant which he had in Nov. 2005. For Tom - and I think his results are unusual for a kid his age - it's been fabulous. Stunning... He went from a 4% word recognition score to 96% at his three month mapping (programming) appointment. Tom has always been an oral/ auditory kid and did well with his hearing aids so the expectation was that he would do well with his implant but you just never know. I found the " irreversibility " of the implant to be very scary. Yes, he was struggling with his hearing aids where he'd done well previously, but still... We knew what we had - with the implant, it was such a gamble! So it's been SO gratifying to see him doing as well as he's doing. Even his last IEP reflected how much better he's hearing and the impact that's made in the classroom. My younger son had his implant surgery May 24. Sam's still learning to use it but is enjoying it and doing well. We figure we're Hanover's most wired family now! If you have questions, just ask. Take care Barbara klechien2000 wrote: > I have some questions for those whose children are using Cochlear > Implants especially helpful for those whose children are older and > were aided first then recieved Cochlear later. > > My concern is that the cochlear won't be any better than the hearing > aids and we put through an unnecessary surgery. He has both > sensorineural and conductive loss (profound in right ear and severe > in left. He has had to endure 14 surgeries and procedures so far in > 7 years and we are about to go through trach reconstruction the end > of the month and another growing rod lengthening in Oct. I know > that they could do the CI when they do one of the other surgeries > but my concern is the success of it. > > We have had so many people tell us that it is better and so many say > that it is nothing more than a glorified hearing aid. When you read > the literature it is the same, it depends on who is writing the > article. That is why I am looking to the experts those who are > using them, not just the doctors, ST, and audi (all who are hearing > and have not had to rely on the use of aids or CI). > > My expectations are not that he will learn to talk. We are almost > past the window of acquiring speech (successfully), I am not trying > to make him a hearing child (he is Deaf), I want him to have clearer > sound not just louder sounds. If only to help him keep safe. Such > as: he hears the car coming up behind him when he is walking down > the road (He is never outside by himself but he will be some day)or > he hears the fire/smoke detector going off. I know that we can have > flashing lights for all the alarms and bells at home but not every > building has that. That he hears peoples voices not everyone knows > he is deaf. > > I know a couple of children at our school (I work in the D/HOH class > grades 1-6)who have CI but they got their implants very early on. > Neither is a talker both use ASL. One of the children I know the > parents don't follow up on the auditory training so he doesn't > respond to his name being called, etc. He does hear the fire alarm > and responds to that, but doesn't respond to speech. The other > child responds to speech and understands probably 90% of what is > said but uses sign because her speech never developed (there are > other issue other than just deafness). so please all information, > thoughts, ideas that you have would greatly be appreciated. You can > email privately so not to tie up the listserv if you wish. > Thanks. > This is a great place for parents from what I have read so far. > Kim in FL > > > > > > > > > > All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 I can only speak for my daughters when I say it has been like a miracle. But, for only one of them. We have two deaf daughters and one doesn't mind being deaf, and the other only wants to hear. The one who wants to hear LOVES her implant, and can literally hear a pin drop. Now, since she was implanted at 12 years old (and adopted from an orphanage at 5 y.o. with no language), her speech isn't the best, but she will be able to get along OK is she tries very hard to make people understand her speech. She needs to be corrected quite often to " speak clearly " , and then she will. Her implant surgery is the best thing we could have done for her once we brought her home. Tish Questions >I have some questions for those whose children are using Cochlear > Implants especially helpful for those whose children are older and > were aided first then recieved Cochlear later. > > My concern is that the cochlear won't be any better than the hearing > aids and we put through an unnecessary surgery. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 > I have some questions for those whose children are using Cochlear > Implants especially helpful for those whose children are older and > were aided first then recieved Cochlear later. JD's hearing loss was/is progressive. He's worn hearing aids since his loss was diagnosed at 18 months. At 12 his loss progressed to the point where he qualified for an implant. He now uses the CI on one ear and a hearing aid on the other. He doesn't get much from the hearing aid alone, but he does when he uses it with his implant. >> My concern is that the cochlear won't be any better than the hearing aids and we put through an unnecessary surgery.<< With JD, it made a tremendous difference. With hearing aids, my son was never able to understand my husband's voice - I always had to repeat what he said in order for JD to understand him. Shortly after the CI was activated, he was able to carry on a conversation with his dad, on the phone! I'd make the decision again in a heartbeat. > He has both > sensorineural and conductive loss Ditto also for JD. >> I know that they could do the CI when they do one of the other surgeries but my concern is the success of it.<< Nobody can guarantee success - unfortunately, but you've made a good start. Feel free to ask me any questions you want. I'm always open about our experiences. And for those who worry about such things, I often ask JD about how he feels about my sharing his life with so many other people. He's proud of the fact that his life has helped others. In fact, he often walks by when I'm reading the email or typing messages and tells me, " Tell them I said hello. " ;-) >>That is why I am looking to the experts those who are using them, not just the doctors, ST, and audi (all who are hearing and have not had to rely on the use of aids or CI).<< I'll tell you exactly how JD feels about his. He calls his implant surgeon " My Miracle Man " . I've never heard him refer to an audiologist that way. He's off for work and says Hi! -Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 Hi!!! Tawnya Re: Questions > I have some questions for those whose children are using Cochlear > Implants especially helpful for those whose children are older and > were aided first then recieved Cochlear later. JD's hearing loss was/is progressive. He's worn hearing aids since his loss was diagnosed at 18 months. At 12 his loss progressed to the point where he qualified for an implant. He now uses the CI on one ear and a hearing aid on the other. He doesn't get much from the hearing aid alone, but he does when he uses it with his implant. >> My concern is that the cochlear won't be any better than the hearing aids and we put through an unnecessary surgery.<< With JD, it made a tremendous difference. With hearing aids, my son was never able to understand my husband's voice - I always had to repeat what he said in order for JD to understand him. Shortly after the CI was activated, he was able to carry on a conversation with his dad, on the phone! I'd make the decision again in a heartbeat. > He has both > sensorineural and conductive loss Ditto also for JD. >> I know that they could do the CI when they do one of the other surgeries but my concern is the success of it.<< Nobody can guarantee success - unfortunately, but you've made a good start. Feel free to ask me any questions you want. I'm always open about our experiences. And for those who worry about such things, I often ask JD about how he feels about my sharing his life with so many other people. He's proud of the fact that his life has helped others. In fact, he often walks by when I'm reading the email or typing messages and tells me, " Tell them I said hello. " ;-) >>That is why I am looking to the experts those who are using them, not just the doctors, ST, and audi (all who are hearing and have not had to rely on the use of aids or CI).<< I'll tell you exactly how JD feels about his. He calls his implant surgeon " My Miracle Man " . I've never heard him refer to an audiologist that way. He's off for work and says Hi! -Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 Kim the implant has made a difference in Hayley's life. She was implanted at age 10 ... prior to that she wore one hearing aid, a widex, in her right ear. I would have to say that she did develop more oral speech POST implant, but that could have been due to me being directly involved in her speech therapy post implant...actually we called it aural rehab more so; she had to learn to listen before she could discern the sounds. Initially got the implant for environmental/safety reasons, similar to what you say here. I think you may not know if the cochlear is better than the hearing aids until you use them. Does your son wear digital aids? I wanted to point out again that Hayley was 10 when she was implanted. It sounds like your son has been thru a lot in his life and along with the CI often comes more therapy as you know. If you already have so much going on, could you consider putting it off another year or so? Good luck -- In Listen-Up , " klechien2000 " wrote: > > I have some questions for those whose children are using Cochlear > Implants especially helpful for those whose children are older and > were aided first then recieved Cochlear later. > > My concern is that the cochlear won't be any better than the hearing > aids and we put through an unnecessary surgery. He has both > sensorineural and conductive loss (profound in right ear and severe > in left. He has had to endure 14 surgeries and procedures so far in > 7 years and we are about to go through trach reconstruction the end > of the month and another growing rod lengthening in Oct. I know > that they could do the CI when they do one of the other surgeries > but my concern is the success of it. > > We have had so many people tell us that it is better and so many say > that it is nothing more than a glorified hearing aid. When you read > the literature it is the same, it depends on who is writing the > article. That is why I am looking to the experts those who are > using them, not just the doctors, ST, and audi (all who are hearing > and have not had to rely on the use of aids or CI). > > My expectations are not that he will learn to talk. We are almost > past the window of acquiring speech (successfully), I am not trying > to make him a hearing child (he is Deaf), I want him to have clearer > sound not just louder sounds. If only to help him keep safe. Such > as: he hears the car coming up behind him when he is walking down > the road (He is never outside by himself but he will be some day) or > he hears the fire/smoke detector going off. I know that we can have > flashing lights for all the alarms and bells at home but not every > building has that. That he hears peoples voices not everyone knows > he is deaf. > > I know a couple of children at our school (I work in the D/HOH class > grades 1-6)who have CI but they got their implants very early on. > Neither is a talker both use ASL. One of the children I know the > parents don't follow up on the auditory training so he doesn't > respond to his name being called, etc. He does hear the fire alarm > and responds to that, but doesn't respond to speech. The other > child responds to speech and understands probably 90% of what is > said but uses sign because her speech never developed (there are > other issue other than just deafness). so please all information, > thoughts, ideas that you have would greatly be appreciated. You can > email privately so not to tie up the listserv if you wish. > Thanks. > This is a great place for parents from what I have read so far. > Kim in FL > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 Dear Kim, In my experience a cochlear implant is a 1000 times better than a hearing aid. My daughter Sierra received her cochlear implant a couple months before her fourth birthday, she will be six in November. The difference before and after are night and day. The hearing aids didn't help Sierra, she was very frustrated just trying to get us to understand what she wanted. Sierra also has a trach like your son and has had multiple surgeries 19 so far. Sierra is so much happier (she was a happy little girl before). She is able to hear and understand us, follow directions. She loves to listen to music. To me her cochlear implant has been a miracle for us. She loves to hear and doesn't want to take her processor off at night or bedtime. Sierra has been doing AV therapy since she was activated as well as speech. Before she had her implant she wanted nothing to do with her passimur valve. Now that she can hear herself she wears it most of the day and talks (you can't always understand her, but her speech is getting better). I feel that the cochlear implant helps give Sierra a better chance at living a more normal life. She can sign, but it doesn't help unless everyone else knows how to as well. How long has your son had his trach and who is doing his trach reconstruction and when? Sierra sees Dr. Cotton for airway issues and Dr. Choo for ear issues, both of them are at Cincinnati Children's Hospital. If there is anything else that I can help answer feel free. Take care and God Bless.Natasha~Mom to~ (8/25/97) Asthma Sierra (11/28/00) Multiple Craniosynostosis, Crouzon's Syndrome, Syndrome, Asthma, Trach, Tracheamalacia, Bronchomalacia, Subglottic Stenosis, Chonal Stenosis, FTT,GERD, G-tube & Nissan, Strabismus, Profound hearing loss, CI implanted 8/19/04. Activated 9/7/04 Sierra's story: www.cappskids.org/CAPPSCranioKidSierra.htm www.tracheostomy.com/trachkids/kids18/sierra.htm www.Caringbridge.org/oh/sierra Questions I have some questions for those whose children are using Cochlear Implants especially helpful for those whose children are older and were aided first then recieved Cochlear later. My concern is that the cochlear won't be any better than the hearing aids and we put through an unnecessary surgery. He has both sensorineural and conductive loss (profound in right ear and severe in left. He has had to endure 14 surgeries and procedures so far in 7 years and we are about to go through trach reconstruction the end of the month and another growing rod lengthening in Oct. I know that they could do the CI when they do one of the other surgeries but my concern is the success of it. We have had so many people tell us that it is better and so many say that it is nothing more than a glorified hearing aid. When you read the literature it is the same, it depends on who is writing the article. That is why I am looking to the experts those who are using them, not just the doctors, ST, and audi (all who are hearing and have not had to rely on the use of aids or CI). My expectations are not that he will learn to talk. We are almost past the window of acquiring speech (successfully), I am not trying to make him a hearing child (he is Deaf), I want him to have clearer sound not just louder sounds. If only to help him keep safe. Such as: he hears the car coming up behind him when he is walking down the road (He is never outside by himself but he will be some day)or he hears the fire/smoke detector going off. I know that we can have flashing lights for all the alarms and bells at home but not every building has that. That he hears peoples voices not everyone knows he is deaf. I know a couple of children at our school (I work in the D/HOH class grades 1-6)who have CI but they got their implants very early on. Neither is a talker both use ASL. One of the children I know the parents don't follow up on the auditory training so he doesn't respond to his name being called, etc. He does hear the fire alarm and responds to that, but doesn't respond to speech. The other child responds to speech and understands probably 90% of what is said but uses sign because her speech never developed (there are other issue other than just deafness). so please all information, thoughts, ideas that you have would greatly be appreciated. You can email privately so not to tie up the listserv if you wish. Thanks. This is a great place for parents from what I have read so far. Kim in FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Kim, My daughter was aided with Widex digitals at 3 years old and did very well with them. Her hearing loss began to progress to the severe/profound range and she was having trouble in school, but would never admit it. Finally at 7.5 years old, she reached the 85/90 db area, allowing her to get an implant. She wanted the implant, but took a while to warm up to it. She still prefers the hearing aid (in the unimplanted ear), although all tests show that she hears SOOOO much better with the implant. It has been 9 months since she was implanted, and we are thankful that we went through with the surgery, because we know that it will just get better and better for her, especially later in life. She probably could have gone the rest of her life with hearing aids, but she also would have been missing alot along the way. I don't know where you are in Florida, but there are 3 good CI surgeons that I know of. Dr. Lundy & Dr. Greene in ville Florida; and Dr. Balkiny (sp?) in Miami, F lorida. Good luck in your decision. Robin -------------- Original message -------------- I have some questions for those whose children are using Cochlear Implants especially helpful for those whose children are older and were aided first then recieved Cochlear later. My concern is that the cochlear won't be any better than the hearing aids and we put through an unnecessary surgery. He has both sensorineural and conductive loss (profound in right ear and severe in left. He has had to endure 14 surgeries and procedures so far in 7 years and we are about to go through trach reconstruction the end of the month and another growing rod lengthening in Oct. I know that they could do the CI when they do one of the other surgeries but my concern is the success of it. We have had so many people tell us that it is better and so many say that it is nothing more than a glorified hearing aid. When you read the literature it is the same, it depends on who is writing the article. That is why I am looking to the experts those who are using them, not just the doctors, ST, and audi (all who are hearing and have not had to rely on the use of aids or CI). My expectations are not that he will learn to talk. We are almost past the window of acquiring speech (successfully), I am not trying to make him a hearing child (he is Deaf), I want him to have clearer sound not just louder sounds. If only to help him keep safe. Such as: he hears the car coming up behind him when he is walking down the road (He is never outside by himself but he will be some day)or he hears the fire/smoke detector going off. I know that we can have flashing lights for all the alarms and bells at home but not every building has that. That he hears peoples voices not everyone knows he is deaf. I know a couple of children at our school (I work in the D/HOH class grades 1-6)who have CI but they got their implants very early on. Neither is a talker both use ASL. One of the children I know the parents don't follow up on the auditory training so he doesn't respond to his name being called, etc. He does hear the fire alarm and responds to that, but doesn't respond to speech. The other child responds to speech and understands probably 90% of what is said but uses sign because her speech never developed (there are other issue other than just deafness). so please all information, thoughts, ideas that you have would greatly be appreciated. You can email privately so not to tie up the listserv if you wish. Thanks. This is a great place for parents from what I have read so far. Kim in FL Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.