Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 , I kind of doubt that there was much your mother could have done that would have really changed the outcome of your progression. From time to time I read a little about current bracing...and it doesn't seem to me that I have read much that indicates it will do much even with todays techniques except stabilize the milder curves...and then the best results are with VERY compliant patients who wear them 23 hours a day. I don't know what kind of teen you were....but I am pretty sure I would not have been that kind of patient! So maybe the blessing in disguise was that you were spared all the angst of that much mother-daughter nagging and bickering when you very likely still would have had to have surgery? It may have been neglect, but it may have worked in your favor. I am so sorry that you (and many of us) have had to endure the pain & humiliation, indignity, and psychological trauma that was a part of the early HR surgery. Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 That's true, Cam. I wore my Milwaukee brace faithfully for 2 years and still had surgery in 1975. When my daughter was diagnosed at the age of 9 her curve was 44 degrees. She faithfully wore her Boston Brace and still have surgery at the age of 12 when it went over 55 degrees. I really don't think bracing helps the more advanced curves no matter how faithful you are. Peggy [ ] Re: Bracing - ,I kind of doubt that there was much your mother could have done that would have really changed the outcome of your progression. From time to time I read a little about current bracing...and it doesn't seem to me that I have read much that indicates it will do much even with todays techniques except stabilize the milder curves...and then the best results are with VERY compliant patients who wear them 23 hours a day. I don't know what kind of teen you were....but I am pretty sure I would not have been that kind of patient!So maybe the blessing in disguise was that you were spared all the angst of that much mother-daughter nagging and bickering when you very likely still would have had to have surgery? It may have been neglect, but it may have worked in your favor.I am so sorry that you (and many of us) have had to endure the pain & humiliation, indignity, and psychological trauma that was a part of the early HR surgery.Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Cam and Peggy, I know in my mind finding it earlier probably would not have made much difference but emotionally, I still sometime suffer, the what if's and therefores. Anyway, your right it was a very traumatic time. I lost a whole year on body rest in that awful riser cast. The second surgery though a world of difference in some respects but yet, the same in other respects. I like walking tall, mostly straight and a whole lot stronger. It was worth it. > > That's true, Cam. I wore my Milwaukee brace faithfully for 2 years and still had surgery in 1975. When my daughter was diagnosed at the age of 9 her curve was 44 degrees. She faithfully wore her Boston Brace and still have surgery at the age of 12 when it went over 55 degrees. I really don't think bracing helps the more advanced curves no matter how faithful you are. > > Peggy > > [ ] Re: Bracing - > > > , > > I kind of doubt that there was much your mother could have done that > would have really changed the outcome of your progression. From time > to time I read a little about current bracing...and it doesn't seem > to me that I have read much that indicates it will do much even with > todays techniques except stabilize the milder curves...and then the > best results are with VERY compliant patients who wear them 23 hours > a day. I don't know what kind of teen you were....but I am pretty > sure I would not have been that kind of patient! > > So maybe the blessing in disguise was that you were spared all the > angst of that much mother-daughter nagging and bickering when you > very likely still would have had to have surgery? It may have been > neglect, but it may have worked in your favor. > > I am so sorry that you (and many of us) have had to endure the pain & > humiliation, indignity, and psychological trauma that was a part of > the early HR surgery. > > Take Care, Cam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Dear Peggy, My daughter that has scoliosis had early onset too. Was your daughter's onset early too? Best guess is that mine was too. So for those coming after us, be mindful that it can and does show up sometimes in our children. I was very lucky we caught Ceili's scoliosis while it was very early in the progression. She did get to the point where she needed to be braced, but never got surgical, thank goodness, thankyou Dr. Kumar for his dedicated work with her, and for our excellent bracemaker Darrell that got us through. I also give Ceili a ton of credit, very hard to wear a brace, with strapping on the inside, very uncomfortable, for 18 hours a day for a year. Her dedication paid off, her progression was halted till she was no longer growing, so bracing can and does work for some. Her curve has been maintained at 28 degrees for over two years now. So after five years of care, she's been released from care and will see Kumar in five years for a check-up. So my advice to all of you, is watch your kids like a hawk, for subtle signs of scoliosis, make your PCP aware that scoliosis is in your family, and make sure they take it seriously. Was Ceili helped by early detection, probably, but there is a chance even with the bracing, her curve may have progressed anyway. I will always wonder what if mine was caught earlier, would have it gotten so bad, maybe, probably, but who knows. All I know is that Ceili had parents that got the " Beast", got her to an excellent doc, and got her the best care possible, all we can do for our kids, and the rest is in our higher beings hands. Kumar said to me, something that will always stay with me" , her curve is her curve, not yours, so don't read more into it, let me take care of this". I was lucky, she's lucky, both of us have had excellent care, and afterall if you have to have something, and most people will in their lifetimes, at least scoliosis is something they can do something about. [ ] Re: Bracing -> > > ,> > I kind of doubt that there was much your mother could have done that > would have really changed the outcome of your progression. From time > to time I read a little about current bracing...and it doesn't seem > to me that I have read much that indicates it will do much even with > todays techniques except stabilize the milder curves...and then the > best results are with VERY compliant patients who wear them 23 hours > a day. I don't know what kind of teen you were....but I am pretty > sure I would not have been that kind of patient!> > So maybe the blessing in disguise was that you were spared all the > angst of that much mother-daughter nagging and bickering when you > very likely still would have had to have surgery? It may have been > neglect, but it may have worked in your favor.> > I am so sorry that you (and many of us) have had to endure the pain & > humiliation, indignity, and psychological trauma that was a part of > the early HR surgery.> > Take Care, Cam> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Even if the school nurse checks your child, it doesn't mean that they know what they are seeing/doing. I believe here in CA it's like 6th grade or something that they do the scoliosis thing. Mostly, it's just a " bend over and let me see if your spine is crooked " check. My youngest daughter said she had that checkup, too, and the nurse did not catch her scoliosis. Luckily, hers is very minor. No need for surgery. If you look at her, you wouldn't even notice it. Carol V. > > > > That's true, Cam. I wore my Milwaukee brace faithfully for 2 years > and still had surgery in 1975. When my daughter was diagnosed at the > age of 9 her curve was 44 degrees. She faithfully wore her Boston > Brace and still have surgery at the age of 12 when it went over 55 > degrees. I really don't think bracing helps the more advanced curves > no matter how faithful you are. > > > > Peggy > > > > [ ] Re: Bracing - > > > > > > , > > > > I kind of doubt that there was much your mother could have done > that > > would have really changed the outcome of your progression. From > time > > to time I read a little about current bracing...and it doesn't > seem > > to me that I have read much that indicates it will do much even > with > > todays techniques except stabilize the milder curves...and then > the > > best results are with VERY compliant patients who wear them 23 > hours > > a day. I don't know what kind of teen you were....but I am pretty > > sure I would not have been that kind of patient! > > > > So maybe the blessing in disguise was that you were spared all > the > > angst of that much mother-daughter nagging and bickering when you > > very likely still would have had to have surgery? It may have > been > > neglect, but it may have worked in your favor. > > > > I am so sorry that you (and many of us) have had to endure the > pain & > > humiliation, indignity, and psychological trauma that was a part > of > > the early HR surgery. > > > > Take Care, Cam > > > Quote Link to comment Share on other sites More sharing options...
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