Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Hi lynn May had a transpalatal repair when she was 5 months, and had stents placed three times, in aug they made one big opening instead of the two small passages and a bone like mass grew back in less then 2 months its so frustrating they don't yet know how they are going to approach it in feb. i hope they do something that will work Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 its great that 's surgery was such a success. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 's success 16 years ago (3 1/2 years old) came when the ENT went up through her soft palate and through bones in the roof of her mouth to enlarge the nasal passages. It was a very nasty surgery and was miserable for a while. She had soda straw size nasal stents for two months afterwards. It was worth it. It worked and an exam last summer 16 years later show the passages are still fine. The other three surgeries and weeks of stents each time through the nostrils themselves had failed. Can't help with the pherinal flap info. This many years later there may be better surgeries but this worked for . Lynn Ohio Mom to Tom 24, 19 cHARGE, wife to Doug choanal atresia Hello everyone, i was wondering if anyone would be able to help us May has had 6 chanal atresia repairs and none have worked so far has anyone had success and w/ what type of procedure? needs a pheringal flap any info on that would be greatly appriciated. Thanks, Cris Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 my daughter erika had the repair 6 times also, she is now 8. the first several were not very successful, they stented for 6 weeks, then took them out and 1 yr later is was closed. dr. cotton did it through the palate and removed more bone. we then went to NYU and they had to do it another time. she now does not have naymore bone left to remove in that area. but it finally stayed open on one side and is very narrow on the other. the good news is that it is enough for her to breath through and they removed the trach this summer! she is doing o.k. she breaths through her mouth and her one nostril. it takes time b/c as they grow so does the bone and bones natural tendancies are to close together. think of it as a broken bone, whenit heals it comes together, i also was feeling very frustrated and thought it would never stay open. i found through this list that a lot of us have dealt with this and it does eventually work. i also feel through the palate and extendeded stenting makes adifference. good luck cathie, mom to erika 8 CHARgEr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 My son had 4 surgeries, the first 3 were done incorrectly, lack of experience from the doctor, live and learn. The last one was done by transpalate and he had huge stents in that were kept in for 8 months. The last surgery was done at 10 weeks old. He has never had a problem since, except for the occasional mystery pain which I am sure is from all the surgery. My son is now 6. choanal atresia Hello everyone, i was wondering if anyone would be able to help us May has had 6 chanal atresia repairs and none have worked so far has anyone had success and w/ what type of procedure? needs a pheringal flap any info on that would be greatly appriciated. Thanks, Cris Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! ---------------------------------------------------------------------------- ---- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Wow, I sure hope they find a way. You will be in my prayers. Lynn Re: choanal atresia Hi lynn May had a transpalatal repair when she was 5 months, and had stents placed three times, in aug they made one big opening instead of the two small passages and a bone like mass grew back in less then 2 months its so frustrating they don't yet know how they are going to approach it in feb. i hope they do something that will work Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Kennedy is up to six as well Cris, so I know how you feel. I spoke to a doctor in Toronto at Sick Kids Hospital, his way of doing it is gradual dilatations, every few months. Tough for me living fourteen hours away though. Weir Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to Graeme. New Brunswick, Canada Weir homepage: http://personal.nbnet.nb.ca/gweir CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca choanal atresia Many kids with CHARGE need multiple surgeries ot keep the choanae open, but six is indeed extreme. One suggestion I have is for you or your doctors to contact the Aerodigestive and Sleep Center at Cincinnati Children's Hospital. Dr. Robin Cotton is a world-renowned expert - I know they have seen (and done surgery) on lots of kids with CHARGE. At the 2001 Indianapolis CHARGE Conference, Dr. Rutter from that clinic talked about trachs and choanal atresia - they clearly have worked out some slightly different protocols for children with CHARGE. Start by checking out the website for the clinic: http://www.cincinnatichildrens.org/svc/prog/aerodigestive/default.htm Good luck. Meg Meg Hefner MS Genetic Counselor St. Louis MO meg@... Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! 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.