Guest guest Posted November 16, 2001 Report Share Posted November 16, 2001 What do you have? LIFE IS UNCERTAIN....EAT DESSERT FIRST " Harrington Rod people and other post-op multiple spine surgery people may be interested in the following website dedicated to flatback syndrome and multiple spine surgery cases: " Salvaged Sisters of Scoliosis " website http://forums.delphi.com/adultscoliosis/messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2001 Report Share Posted November 18, 2001 Um...kyphosis. not sure what you are looking for here. > What do you have? > > LIFE IS UNCERTAIN....EAT DESSERT FIRST > " Harrington Rod people and other post-op multiple spine surgery people may > be interested in the following website dedicated to flatback syndrome and > multiple spine surgery cases: " Salvaged Sisters of Scoliosis " website > http://forums.delphi.com/adultscoliosis/messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2008 Report Share Posted August 30, 2008 Hi , My kids are checked over and over for scoliosis. Our CMT surgeon is also a Scoli specialist. Are you in California by any chance? Dr. Saul Bernstein at SCOI in Van Nuys. His son Dr. Bernstein would also be a good person to talk to he is on the CMT board. Maybe takes email questions since he is on the CMT board? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Hi . My grandfather had Kyphoses, although we didn't know it, he looked like how I imagine the hunchback of Notre Dame to look. I myself have only learnt about kyphoses in the past couple of years. I have it myself. At 12 years old mum threatened me with a brace if I didn't improve my posture. The threat worked but once I got to adulthood my posture worsened and now I have very round shoulders although I don't think they are at a degree where they would require surgery and even if they were I wouldn't have that surgery. My 12 yr old daughter with CMT does not have kyphoses, yet my 6 year old son has it mildly. He is seeing a chiropractor at the moment, I hope that can do something to help his round shoulders. I also mention it each year when we go for check ups with the orthopeadic surgeon. I do not want him having surgery if it gets to that stage. I would rather start out with my son having a brace if he does need anything. Sorry this isn't much help for you and your son. I hope you find the answers. Megs from New Zealand Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Hi , I sympathize with your son's situation. I have scoliosis and I wore a brace full-time for about 3 years from 13 to 16 yrs old, then part-time for about a year after that. Wearing the brace wasn't fun, but it wasn't terrible. The most challenging part was the social aspect, but it was definitely worth it. I have a side to side " S " curve, where the spine goes one direction in the middle back and then the other way in the lower back. I also have kyphosis type curve in my neck. The purpose of the brace is to push things into a correct position as much as possible and then just hold them there until the bones harden. Once the bones are fixed, the hope is they won't change much. Without the brace, however, the curvature can become much worse during his growing years. The brace did stop my progression at the time and improved the curves. Last year my spine was x-rayed and showed no worsening of the curves after nearly 30 years. It's been a long time since I went through it, so I don't know what current medicine is like now, and I didn't know I had CMT at the time, but for what it's worth...the most important advice I could give at the time...based on my experience was... - wear it for the 23 hours, like the doctors say - do the daily exercises the doctors recommend - go into a modified PE program or just be excused from PE class altogether In my attempts to try to be " normal " with the brace, I stayed in regular PE classes and severely injured my knee playing soccer. The brace caused my balance to be even worse than I normally experienced with my bad feet/legs. The knee reconstruction set me back more than anything else has ever and will continue to have an impact for the rest of my life. So, just be careful. Avoid running with it on. Hope that helps and I hope things go well with him! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 , Thanks so much for that information. I am in CA and i will try to get in touch Dr. Saul Bernstein or his son Tuesday. I appreciate your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Hi , Your story helps more than you know. It give me the extra knowledge and support that this back brace is as essential as the physicians purport, although these days, many hesitate to prescribe the brace due to teen compliancy issues. My son, Yohan, grew 7 inches over the past year, and it was during this time he developed such prominent kyphosis. After he wears the brace, even for several hours, i see a difference in the degree of curvature. Luckily, at 15 he is still malleable. Thanks again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Dear , I am glad to hear that the brace worked. More and more, I think it is the thing to do, and at 15, with all the other issues, we are not having fun and the social part, especially entering a new school, with different kids, none of whom he knows, is and will be challenging. I just have to keep in mind that it will all be worth it in the end. The advice you have given rings true today. Your words are the exact words of the physicians. The only difference is that they said it was okay to remove it while doing PE activities, which I will make sure happens, especially due to your testimony. Thanks again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Hello , I hear alot of discussion about the scoliosis and I thought I might chime in about the pidgeon breast. I have pidgeon breast as well as my brother. My father had it also, but neither my bothers, nor my fathers was as previlent as mine. It's not easy growing up with both a neurological disease and a cosmetic deformity. I've checked into surgery in my adult life and it would be quite involved. They would literaly crack my chest open like they were doing heart surgey and then re-set it. Too old and don't care THAT much anymore. As for your son...........big shirts. If he is able to do chest excersises, then this will not do anything about the sternum but it will increase the mass around it. Don't slouch. Especially if he has scoliosis. I had a tendacy to slouch, because thowing my shoulders forward increased the amount of shirt in the front. I did not like my shirts tight. Summers are also difficult with everybody running around the pool with their shirts off. Please tell him that I may not understand the scoliosis, but there is at least one out here that understands the pidgeon chest and know it ain't easy being a teenage boy with that to deal with. defman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 I don't post often, but I just want to mention that my 12 year old daughter was just told she has scoliosis after a major growth spurt. She also was just dx with CMT (inherited from my husband). This discussion has been helpful as I did not know it could be related to CMT esp. since scoliosis runs on my side of the family, (I have a mild curvature). Her pediatrician said that it wouldn't require surgery since she won't grow much more, but a brace may be helpful. Is that true? Also, she will be in adaptive P.E. this year for fatique and balance issues. Tomorrow we are going to pick up her orthotics which hopefully will help her in these early stages. Sorry I'm going off on a tangent. Thanks everyone! ~M.Green Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 Hi M., Thanks for your input. What strikes me about your reply is that at 12, the pediatrician does not think your daughter will grow much more. Has she had a hip x-ray to measure bone age? I would think she still has quite a bit of growing to do. Just a thought. As for bracing, I think physicians are up in the air as to what works and what does not. No one has guaranteed improvement for Yohan's kyphosis, but if compliance is not an issue, they will usually prescribe a brace. Maybe the statistics are different for scoliosis, but I would definitely have your daughter checked out every 6 months. Whenever I hear about fatigue in those with CMT, I think about sleep apnea and how prevelent it is in the CMT population. My son was so tired all the time, he could barely stay awake during the day and lost all energy to do the activities most important to him. Thankfully we had a sleep study done, which showed moderate sleep apnea (he wakes 14 times per hour). He is trying to get used to a CPAP - not an easy task. However, sleep is so important for the body and health, I am glad we found a root cause explaining his continual lethargy. Talk about tangents!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 Hi M.Green, You asked the question: " Her pediatrician said that it wouldn't require surgery since she won't grow much more, but a brace may be helpful. Is that true? " Yes, a brace may be helpful. A brace may be able to correct some of the curvature she already has and prevent additional curving. As for surgery, this is only required when the curvature is severe. If it's not severe already and she goes into a brace now, it's not likely she would ever need the surgery. If you are asking if it's ok to not use the brace and hope that she won't need surgery because the doctor said she won't grow that much more, it's probably true, but even if she doesn't need surgery, the curvature still might get worse than it is now without bracing. I would recommend a visit to an orthopedic specialist. She still has 2-4 growing years left. " In my day " , they did x-rays of the hip bone to determine when I was done growing. They looked at the development of the growth plates over the hip bone. After a certain point (when I was about 15-1/2 yrs old), they said it was safe for me to be out of the brace, then they had me wear it just at night for about a year. I believe they still use this x-ray technique. Maybe they have other ways now that are even better to determine how much growth she has left. I would suggest a second opinion from an orthopedic surgeon who specializes in the spine, if you can. He/she may be able to run tests and provide info that would make your decision easier. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 Hi again. I am taking my daughter for Xrays so the next step will be to see an orthopedic doctor. The reason the pediatrician said she will not grow much more is because she started menstruation last year, and she is already 5'3. Apparently, growth slows after menstruation begins. Another thing I never knew. Last year when I told her school about the CMT dx (I sent in brochures, etc.,), they were very accomodating and gave her an extra set of books to keep at home, let her take the elevator when needed, and gave her breaks during P.E. This year they put her in the adaptive P.E. class which is for kids with mild physical disabilities. They let them go at their own pace and do some weight training, stretching, etc., All this without an IEP! We are fortunate to live in a progressive school district. My 5 year old son has autism and his school is the same way, although he does have an IEP. I do realize that my daughter may need one as well depending on the progression. Thanks for all the input, M. Green Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 I heard you might grow two more inches after menstruation starts.When I was eleven I looked like a big clunk.....I started when I was eleven. I ended up being five one and then suddenly almost everyone was taller then me! Geri 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.