Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Hi Debbie, Yikes! Do they know why lost some hearing? regards, Anne, mom of Penina (CHARGE, 6) Bill Matasker wrote: > Does anyone have the BAHA? It is fairly new - it's a bone conduction > implant. They are recommending it for my son . According to all the > research and people who have it, he should hear almost everything with it. > He has a mixed loss with 80db in the better ear - 120 in the other. He was > hearing in the moderate range unaided until recently and he has lost more > hearing. It was confirmed the other day. He presently has the E3 > programmable, and they have it turned up as high as it could possibly go. > > Debbie Matasker mom to w/CHARGE 5.5, 8, andra 3 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Debbie, We are making the decision on April 1st for Kennedy to have the BAHA surgery, she's lost 50 db in the past month and it's much better w/ bone conduction. She has numerous ear infections this past year where she's had to have her aids out for a considerable amount of time also, which makes her a prime candidate. ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 RE: BAHA System Does anyone have the BAHA? It is fairly new - it's a bone conduction implant. They are recommending it for my son . According to all the research and people who have it, he should hear almost everything with it. He has a mixed loss with 80db in the better ear - 120 in the other. He was hearing in the moderate range unaided until recently and he has lost more hearing. It was confirmed the other day. He presently has the E3 programmable, and they have it turned up as high as it could possibly go. Debbie Matasker mom to w/CHARGE 5.5, 8, andra 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Debbie, I have wondered about this aid, too. Kendra has a mixed loss as well. They now have one that can be trialed before implanting the BAHA. Have you heard of that type? Has ever tried the regular bone conduction aid? Kendra can hear well with it, but it is cumbersome to wear. Hers has an FM on it and that helps her. I also was wondering about the BAHA. Do you know what is causing the change in hearing?? My concern about implanted devices, no matter what they are, is that the body can be affected in some negative ways. I don't like reading about autoimmune diseases that result from breast implants for example 10 - 20 years after the fact. It makes sense to me that there could be immune system responses that we may not know about for a long time once foreign bodies are implanted in the body. One example that illustrates my concern is the appearance of some meningitis associated with cochlear implants. For many years all the reports said there were no problems. Then, all of a sudden there is evidence of a meningitis connection. While there's only a small number of people potentially affected, it's not a risk I would want to take. I think there are unanswered questions about the immune systems of children with CHARGE. People say they can just get a vaccine to prevent the meningitis. That may be true for some people. But some of the vaccines do not cover all eventualities and some vaccines have the potential for other serious side effects such as diabetes. While I know that is not a popular opinion, I feel it is necessary to bring it up. RE: BAHA System Does anyone have the BAHA? It is fairly new - it's a bone conduction implant. They are recommending it for my son . According to all the research and people who have it, he should hear almost everything with it. He has a mixed loss with 80db in the better ear - 120 in the other. He was hearing in the moderate range unaided until recently and he has lost more hearing. It was confirmed the other day. He presently has the E3 programmable, and they have it turned up as high as it could possibly go. Debbie Matasker mom to w/CHARGE 5.5, 8, andra 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 debbie, its cathie, erikas mom, the are recommending this for erika as well, we have another appt 2/6 to discuss further, i willl be anxious to hear what you find out. cathie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2003 Report Share Posted January 25, 2003 , Remember that the implant is a Titanium screw like implant. They have been using Titanium screws in mending bones for years without any issues. The company has a web page - www.entific.com Bill Dad to Mike RE: BAHA System Does anyone have the BAHA? It is fairly new - it's a bone conduction implant. They are recommending it for my son . According to all the research and people who have it, he should hear almost everything with it. He has a mixed loss with 80db in the better ear - 120 in the other. He was hearing in the moderate range unaided until recently and he has lost more hearing. It was confirmed the other day. He presently has the E3 programmable, and they have it turned up as high as it could possibly go. Debbie Matasker mom to w/CHARGE 5.5, 8, andra 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2003 Report Share Posted January 25, 2003 Here is the link to the BAHA site. http://www.entific.com RE: BAHA System Does anyone have the BAHA? It is fairly new - it's a bone conduction implant. They are recommending it for my son . According to all the research and people who have it, he should hear almost everything with it. He has a mixed loss with 80db in the better ear - 120 in the other. He was hearing in the moderate range unaided until recently and he has lost more hearing. It was confirmed the other day. He presently has the E3 programmable, and they have it turned up as high as it could possibly go. Debbie Matasker mom to w/CHARGE 5.5, 8, andra 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2003 Report Share Posted January 27, 2003 Thanks for all your replies. No one can answer why 's hearing got worse. It is a known factor with CHARGE but right now is unexplainable. The BAHA has been in trials since 1977 and is proven safe. This is a Titanium screw that the body wants to naturally accept. speaks, and fairly well I might say for all he has. Between the facial palsy and the hearing loss and weak swallow, he speaks in full sentences and he is now dependent on his hearing... it is everything to him. He also has lots of fluid even with functional tubes. He does hear better with bone conduction but I am being told that the BAHA surpasses regular bone conduction aides. Two other kids at his school have them with similar hearing loss to 's and are doing extremely well. They can both now hear running water. Both of the other kids were wearing bone conduction headbands. is wearing air - presently E3 programmable. So, we are going for it... we'll let you know how it goes. Debbie Matasker. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2003 Report Share Posted January 27, 2003 My husband had to have his face rebuilt many years ago and has had no problem with the titanium screws. He did reject a different prosthesis. Kim > Thanks for all your replies. No one can answer why 's hearing got > worse. It is a known factor with CHARGE but right now is unexplainable. > The BAHA has been in trials since 1977 and is proven safe. This is a > Titanium screw that the body wants to naturally accept. > > speaks, and fairly well I might say for all he has. Between the > facial palsy and the hearing loss and weak swallow, he speaks in full > sentences and he is now dependent on his hearing... it is everything to him. > He also has lots of fluid even with functional tubes. He does hear better > with bone conduction but I am being told that the BAHA surpasses regular > bone conduction aides. Two other kids at his school have them with similar > hearing loss to 's and are doing extremely well. They can both now > hear running water. Both of the other kids were wearing bone conduction > headbands. is wearing air - presently E3 programmable. > > So, we are going for it... we'll let you know how it goes. > > Debbie Matasker. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 Debbie, Thank you for sharing your story about BAHA, I will be awaiting your results after the surgery, we are deciding on April 1st about whether or not to go for BAHA surgery for Kennedy. ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 RE: RE: BAHA System Thanks for all your replies. No one can answer why 's hearing got worse. It is a known factor with CHARGE but right now is unexplainable. The BAHA has been in trials since 1977 and is proven safe. This is a Titanium screw that the body wants to naturally accept. speaks, and fairly well I might say for all he has. Between the facial palsy and the hearing loss and weak swallow, he speaks in full sentences and he is now dependent on his hearing... it is everything to him. He also has lots of fluid even with functional tubes. He does hear better with bone conduction but I am being told that the BAHA surpasses regular bone conduction aides. Two other kids at his school have them with similar hearing loss to 's and are doing extremely well. They can both now hear running water. Both of the other kids were wearing bone conduction headbands. is wearing air - presently E3 programmable. So, we are going for it... we'll let you know how it goes. Debbie Matasker. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 Hi- Here are two websites I found about BAHA systems (and others) that helped me understand a bit better- maybe they would be helpful to someone! =) http://www.hearingresearch.org/Dr.Ross/implantable_hearing_aids.htm http://www.anarchive.org/hearing_aids.htm best always, Yuka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 I have a titanium screw and plate in my nose where I fell down in 1999 and broke my nose in 3 places. Kay Re: RE: BAHA System > My husband had to have his face rebuilt many years ago and has had no > problem with the titanium screws. He did reject a different prosthesis. > > Kim > > > > > Thanks for all your replies. No one can answer why 's hearing got > > worse. It is a known factor with CHARGE but right now is unexplainable. > > The BAHA has been in trials since 1977 and is proven safe. This is a > > Titanium screw that the body wants to naturally accept. > > > > speaks, and fairly well I might say for all he has. Between the > > facial palsy and the hearing loss and weak swallow, he speaks in full > > sentences and he is now dependent on his hearing... it is everything to him. > > He also has lots of fluid even with functional tubes. He does hear better > > with bone conduction but I am being told that the BAHA surpasses regular > > bone conduction aides. Two other kids at his school have them with similar > > hearing loss to 's and are doing extremely well. They can both now > > hear running water. Both of the other kids were wearing bone conduction > > headbands. is wearing air - presently E3 programmable. > > > > So, we are going for it... we'll let you know how it goes. > > > > Debbie Matasker. > > > > > > Quote Link to comment Share on other sites More sharing options...
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