Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 We did Eva, We saw the top team at Boston, and they had a long list of things they could do. I opted not to do anything. Although was strong and healthy, I was very averse to more surgery, fearing the risks. I kept thinking, we'll see when she's older. But, the older she was, it became even more difficult to take on any of those surgeries, mostly because she would have been acutely aware of the recovery pain and such. The biggest for her would have been nose reconstruction. Then they could have implanted something, I believe, to augment the appearance of her chin, rather than move the jaw. And clip the outer eye tissue to enlarge the one that is smaller, and mess with the ears. I think that's it. She had only one choanal atresia repair, so doesn't have full nostril breathing. That is bothersome to her but a big part of the real problem is a large deviated septum. Her ENT was not on the bandwagon for doing anything about it, but I don't know why. So, I can't suggest what might be the right age, but can say it did NOT get more approachable for us as she got older. Nor could I suggest when might have been a good time, or if I have regrets. It just is what it is, you know? ;-) in Ma. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 OMG Casey, That you did not strangle that doctor is amazing! I find that so insulting that he would dare address the child directly, trying to go over your head, I could spit nails! URGHHHH! But sure was cool dealing with him! Yay ! in Ma. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 good morning crystal, I have thin jaw on the right side and i never had a sugery for my jaw. the doctor tell me no need to have sugury on jaw because if they put the medal around the jaw to straighten in and it really hurt more. so my jaw sometime get sore and not that often. i wouldn't count on jaw sugery and i don't know why the doctor wants to straighten the ear also. hope i got the right answer from you. michele s. -------------- Original message -------------- Does anyone else see a crainal facial doctor? We have one because when Eva was born her lower jaw was small and he thought she might need distractors. Well she never needed them because her jaw grew but we still see him once a year. We saw him yesterday and he was talking about her ear again and how he can fix it to stand straight and look like a normal ear when she is 6 or 7. He brings this up everytime we see him, has anyone else had a doctor say anything like this? Of course our insureance most likely will not pay for any of this and I dont know if I want to get it fixed, it part of who she is as a child with CHARGE. He was also telling me there is a new doctor coming in who works with facial nerves and paralysis and she might be able to fix her paralysis depending on what she sees. I have seen other kids with facial paralysis have surgery and I am again unsure. I know I have years to think about it but I was just wondering all your oppions. Thanks, Crystal and Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 Evan's craniofacial doctor is the specialist who coordinates all his care with other specialties and who our dietician is through. I actually find the particular doctor who follows Evan the least helpful of all the drs he sees, but I just haven't put in a request to see a different doctor on the craniofacial team. Ours has never suggested plastic surgery for the ear (but then, I haven't found that she suggests much of anything...). I asked our pediatrician at home if we really needed to keep seeing craniofacial, and he felt that it would be more of a hassle to switch Evan's primary specialty to a different one than it was worth. So Evan still sees them, although he is down to a 1 yr recall now. (mom to Evan, 23 months) supermama95 supermama95@...> wrote: Does anyone else see a crainal facial doctor? We have one because when Eva was born her lower jaw was small and he thought she might need distractors. Well she never needed them because her jaw grew but we still see him once a year. We saw him yesterday and he was talking about her ear again and how he can fix it to stand straight and look like a normal ear when she is 6 or 7. He brings this up everytime we see him, has anyone else had a doctor say anything like this? Of course our insureance most likely will not pay for any of this and I dont know if I want to get it fixed, it part of who she is as a child with CHARGE. He was also telling me there is a new doctor coming in who works with facial nerves and paralysis and she might be able to fix her paralysis depending on what she sees. I have seen other kids with facial paralysis have surgery and I am again unsure. I know I have years to think about it but I was just wondering all your oppions. Thanks, Crystal and Eva --------------------------------- Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 Crystal, Our crainial facial guy says that he wouldn't fix 's ear until he was through growing, said it wouldn't work as well otherwise. You want a list of things they " want " to do try going to our Crainial/Facial clinic.. Last time we went they sent me a page and a half of " recomendations " . The last time we were in the clinic an ENT resident kept hounding us about 'fixing' his ear.. I told him no and then he started in on (he was 9 or 10 at the time) asking him if he wanted it done and didn't he want to look like all the other kids... looked him right in the eye and said " I doesn't bother me why does it bother you ? " I have heard of so many 'ear' fixes that were done early and didn'[t hold... a few that did but I guess it all has to do with the complexity of the surgery. at 15 1/2 still doesn't want it done. Casey ________________________________________________________________________________\ ____ Get the free Yahoo! toolbar and rest assured with the added security of spyware protection. http://new.toolbar.yahoo.com/toolbar/features/norton/index.php Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 Go AARON! That's pretty much what my son, told his docs regarding his ears. We 'fixed' 's ear only enought to be able to hold the one hearing aid he wears. As for the facial palsy (full bi-lateral), his plastics-guy said that it really was a horrendous surgery and he did not recommend it; the results were not guaranteed either at the time ... maybe 10 years ago. -- & (CHARGE, 25 yo) --- Casey Fisher aarididdle@...> wrote: > Crystal, > > Our crainial facial guy says that he wouldn't fix 's ear until > he was through growing, said it wouldn't work as well otherwise. You > want a list of things they " want " to do try going to our > Crainial/Facial clinic.. Last time we went they sent me a page and a > half of " recomendations " . The last time we were in the clinic an ENT > resident kept hounding us about 'fixing' his ear.. I told him no and > then he started in on (he was 9 or 10 at the time) asking him > if he wanted it done and didn't he want to look like all the other > kids... looked him right in the eye and said " I doesn't bother > me why does it bother you ? " > > I have heard of so many 'ear' fixes that were done early and didn'[t > hold... a few that did but I guess it all has to do with the > complexity of the surgery. at 15 1/2 still doesn't want it > done. > > Casey > > > > ________________________________________________________________________________\ ____ > Get the free Yahoo! toolbar and rest assured with the added security > of spyware protection. > http://new.toolbar.yahoo.com/toolbar/features/norton/index.php > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 , I know a kiddo with Moebius who also had the surgery done.. it was awful.. took forever to heal.. didn't work and he ended up with some nasty scar tissue. Casey ________________________________________________________________________________\ ____ Need a vacation? Get great deals to amazing places on Yahoo! Travel. http://travel.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 Casey, Moebius is what Bran's plastic-guy referenced and am I ever glad we didn't do it. The palsy is pretty much a non-issue at this point in time. does have gold weights in his eyelids that allow him to have somewhat of a blink and can sleep with his eyes completely closed. They were inserted when he was 5 yo. I remember you and from a CHARGE list years ago when we lived in California. We've been transplanted to Arizona and is 25 and now looking at surgery for Scoliosis. He's at a 52 degree curve and the doc wants to insert a rod and other hardware to stop the curve from impacting his internal organs in the future. Sigh. -- & (CHARGE, 25 yo) --- Casey Fisher aarididdle@...> wrote: > , > > I know a kiddo with Moebius who also had the surgery done.. it was > awful.. took forever to heal.. didn't work and he ended up with some > nasty scar tissue. > > Casey > > > > ________________________________________________________________________________\ ____ > Need a vacation? Get great deals > to amazing places on Yahoo! Travel. > http://travel.yahoo.com/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 I had my ears pinned back and up mostly to keep my hearing aids in. My mom wanted me to get my nose done. To be perfectly honest, I like my nose I dont mind if its a tad wide at the top. I think I like my shape of all the nose shapes and noone will ever be doing any work on my nose. I dunno if others think my nose is big but for whatever reason i really like how my nose looks. I did have jaw surgery but that was so i could chew and eat without cracking my teeth because of bad bite. My dad asked me if there was surgery to repair my vision or make the pupils center. I dont think surgery can fix my vision but I like where my pupils are. They are a part of what makes me who I am. Kudos to for telling the doctor what he thought! Chantelle > > Casey, > > Moebius is what Bran's plastic-guy referenced and am I ever glad we > didn't do it. The palsy is pretty much a non-issue at this point in > time. > > > -- > I have 4 eyes, 4 ears, a guide cat and a cat that speaks mouse! - me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 I had my ears pinned back and up mostly to keep my hearing aids in. My mom wanted me to get my nose done. To be perfectly honest, I like my nose I dont mind if its a tad wide at the top. I think I like my shape of all the nose shapes and noone will ever be doing any work on my nose. I dunno if others think my nose is big but for whatever reason i really like how my nose looks. I did have jaw surgery but that was so i could chew and eat without cracking my teeth because of bad bite. My dad asked me if there was surgery to repair my vision or make the pupils center. I dont think surgery can fix my vision but I like where my pupils are. They are a part of what makes me who I am. Kudos to for telling the doctor what he thought! Chantelle > > Casey, > > Moebius is what Bran's plastic-guy referenced and am I ever glad we > didn't do it. The palsy is pretty much a non-issue at this point in > time. > > > -- > I have 4 eyes, 4 ears, a guide cat and a cat that speaks mouse! - me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 Crystal, We see a craniofacial doctor since was born with cleft lip and palate. He commented on her ears the very first time we saw him, and had us taping them down and putting a headband over them her first few weeks of life because he thought that would help them. Of course, we knew nothing of CHARGE at that time, and so didn't realize that the shape of her ears was something that went along with her other medical issues. He mentioned to us back then about possibly doing surgery on them when she got a little older, but now that her hair is longer and covers them, he never brings it up anymore. I don't think we'd bother getting them corrected, anyway. Her hair covers them, for the most part, and we figure she has enough to contend with surgery-wise (she still has a few coming up related to her lip and palate) that we really don't want to put her through another one that's elective. , mom to (5) http://kauffmanlak.blogspot.com/ --------------------------------- Be a better Heartthrob. Get better relationship answers from someone who knows. Yahoo! Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 had his ears " repaired " when he was young...around 4. It was purely cosmetic and purely involved pinning the ears. We too struggled with doing a non-medically necessary surgery but dont regret the decision at all. We too always just accepted 's ears and never even thought we noticed it...until we saw what it was like different. We found an amazing surgeon in New York (THomas Romo) who has done a ton of work with kids with prosthetic ears (and BAHA implants) and was the only one who offered a possible ear repair that did not involve major invasie surgery and rib cartlidge/grafts (at that time). He said pinning them was a very quick fix and might end up being all we'd ever need or want to do. RYan's ears still look " different " on close examination, but it is not the first thing people see. As I said, for us, it was well worth it...though a very personal decision. For us, no insurance coverage for the procedure. Barbara (mom to 6 1/2 CHARGE, Zach 3 1/2) > > Does anyone else see a crainal facial doctor? We have one because when > Eva was born her lower jaw was small and he thought she might need > distractors. Well she never needed them because her jaw grew but we > still see him once a year. We saw him yesterday and he was talking > about her ear again and how he can fix it to stand straight and look > like a normal ear when she is 6 or 7. He brings this up everytime we > see him, has anyone else had a doctor say anything like this? Of > course our insureance most likely will not pay for any of this and I > dont know if I want to get it fixed, it part of who she is as a child > with CHARGE. He was also telling me there is a new doctor coming in > who works with facial nerves and paralysis and she might be able to > fix her paralysis depending on what she sees. I have seen other kids > with facial paralysis have surgery and I am again unsure. I know I > have years to think about it but I was just wondering all your oppions. > Thanks, > Crystal and Eva > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 One more thing...having his ears pinned made wearing his cochlear implant so much easier...it just sat so much better! > > > > Does anyone else see a crainal facial doctor? We have one because when > > Eva was born her lower jaw was small and he thought she might need > > distractors. Well she never needed them because her jaw grew but we > > still see him once a year. We saw him yesterday and he was talking > > about her ear again and how he can fix it to stand straight and look > > like a normal ear when she is 6 or 7. He brings this up everytime we > > see him, has anyone else had a doctor say anything like this? Of > > course our insureance most likely will not pay for any of this and I > > dont know if I want to get it fixed, it part of who she is as a child > > with CHARGE. He was also telling me there is a new doctor coming in > > who works with facial nerves and paralysis and she might be able to > > fix her paralysis depending on what she sees. I have seen other kids > > with facial paralysis have surgery and I am again unsure. I know I > > have years to think about it but I was just wondering all your oppions. > > Thanks, > > Crystal and Eva > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 Thank you all for your replies. Like I said I have years to think about his and of course insurance will not pay for any of it. But thats besides the point. Of course that is the one ear that needs an aid that NEVER stays on. Well thanks again to you all!! Crystal > > > > > > Does anyone else see a crainal facial doctor? We have one because > when > > > Eva was born her lower jaw was small and he thought she might need > > > distractors. Well she never needed them because her jaw grew but we > > > still see him once a year. We saw him yesterday and he was talking > > > about her ear again and how he can fix it to stand straight and look > > > like a normal ear when she is 6 or 7. He brings this up everytime we > > > see him, has anyone else had a doctor say anything like this? Of > > > course our insureance most likely will not pay for any of this and I > > > dont know if I want to get it fixed, it part of who she is as a child > > > with CHARGE. He was also telling me there is a new doctor coming in > > > who works with facial nerves and paralysis and she might be able to > > > fix her paralysis depending on what she sees. I have seen other kids > > > with facial paralysis have surgery and I am again unsure. I know I > > > have years to think about it but I was just wondering all your > oppions. > > > Thanks, > > > Crystal and Eva > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2007 Report Share Posted June 13, 2007 i have an opinion with facial parelisys and ears after reading casyes and a couple of tohers who said the drs wanted it it should b up to the parents and the child the dr can make the suggestion where r we with out the suggestions but then leave it up to thefam hugs ellen > > Thank you all for your replies. Like I said I have years to think > about his and of course insurance will not pay for any of it. But > thats besides the point. Of course that is the one ear that needs an > aid that NEVER stays on. Well thanks again to you all!! > Crystal > > > > > > > > > > Does anyone else see a crainal facial doctor? We have one > because > > when > > > > Eva was born her lower jaw was small and he thought she might > need > > > > distractors. Well she never needed them because her jaw grew > but we > > > > still see him once a year. We saw him yesterday and he was > talking > > > > about her ear again and how he can fix it to stand straight > and look > > > > like a normal ear when she is 6 or 7. He brings this up > everytime we > > > > see him, has anyone else had a doctor say anything like this? > Of > > > > course our insureance most likely will not pay for any of this > and I > > > > dont know if I want to get it fixed, it part of who she is as > a child > > > > with CHARGE. He was also telling me there is a new doctor > coming in > > > > who works with facial nerves and paralysis and she might be > able to > > > > fix her paralysis depending on what she sees. I have seen > other kids > > > > with facial paralysis have surgery and I am again unsure. I > know I > > > > have years to think about it but I was just wondering all your > > oppions. > > > > Thanks, > > > > Crystal and Eva > > > > > > > > > > > > -- stand up and speak up!!!!!!! and dont let the world hold you back just go for it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2007 Report Share Posted June 13, 2007 we saw the crainel facial team years ago b/c we were referred by the ENT (Dr. Cotton!) as a jaw distrcation was the only way he thought 's trach could come out. As it turns out the team did not agree, as her jaw was perfectly in proportion. So we waited and the trach did come out a couple years later w/out the jaw distraction. I never thought of seeing the craniel facial team again. Had never occurred to me. Is this a doctor i should add to our list? I dont think i would fix her ear, i love her elf ear. Her facial pasly has gotten better over time, however, I notice other children stare a lot at first. I have gotten used to it. Can they actaull do something w/the nerve??? Cathie, mom to almost 12 yr!!!!! ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Crystal, First of all I am WAY behind on posts but I saw this one and wanted to respond. Almost every doctor we have seen and even people on the street have made comments about how we can have Jack's ear " fixed " . I am of the belief that if it isn't broken don't fix it. I strongly feel that Jack's ear is a part of who he is. I have always responded by saying that we are perfectly fine with the way his ear looks, that it is a part of who he is, and that if someday Jack wants to get it fixed that we would fully support him. With that said, we are not sure if we are going to avoid fixing it. As Jack is growing his ear seems to be getting more floppy and is starting to fold over on itself. We fear that it is starting to affect his quality of hearing. Also, Jack may be getting glasses in September and we have found that his ear is not strong enough to hold up his sunglasses. It just folds over, occluding his ear canal. We've tried glasses with straps but he will not tolerate it because he has my nose and where the glasses sit it actually pushes on his eyes. We are not sure what we are going to do. We also see a craniofacial specialist. It's actually a team of 7 specialists. We see them once a year because Jack also has a small lower jaw. We saw them for the first time in May and just got a " let's wait and see " . I'm a very proactive person and want to see progress and results so it kills me when the doctors tell me to wait and see. I'm working on it...... ~ Mom of Jack (9mo. CHARGEr) Crainal facial Does anyone else see a crainal facial doctor? We have one because when Eva was born her lower jaw was small and he thought she might need distractors. Well she never needed them because her jaw grew but we still see him once a year. We saw him yesterday and he was talking about her ear again and how he can fix it to stand straight and look like a normal ear when she is 6 or 7. He brings this up everytime we see him, has anyone else had a doctor say anything like this? Of course our insureance most likely will not pay for any of this and I dont know if I want to get it fixed, it part of who she is as a child with CHARGE. He was also telling me there is a new doctor coming in who works with facial nerves and paralysis and she might be able to fix her paralysis depending on what she sees. I have seen other kids with facial paralysis have surgery and I am again unsure. I know I have years to think about it but I was just wondering all your oppions. Thanks, Crystal and Eva ________________________________________________________________________________\ ____ 8:00? 8:25? 8:40? Find a flick in no time with the Yahoo! Search movie showtime shortcut. http://tools.search.yahoo.com/shortcuts/#news Quote Link to comment Share on other sites More sharing options...
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