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Thread: Daughter just diagnosed! Help!

  1. #1
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    Daughter just diagnosed! Help!

    Hi, my 14 yr old daughter was just diagnosed with scoliosis.I have so many questions about this awful disease. I think it's very misunderstood, at least I misunderstood it. My pediatrition told us she had "mild" scoliosis 3 years ago. We went for our scoli check every 6 months. We were always told "mild", don't worry about it-so we didn't!Last summer 2009 we noticed our daughter standing crooked. We kept telling her to stand up straight. She really couldn't. That was Aug. At her 13 year checkup in Sept. I asked the pediatrition about the scoliosis. She had her bend over, took a look , and told us, "Mild again-see you in 6 months." In April 2010 the pediatrition finally decided to check her scoli with an x-ray. The x-ray tech had my daughter stand with her feet together, head straight, shoulders and hips as even as she could get them, told my daughter to not move, and took the x-ray. The reason I'm telling you this is because I have a question pertaining to the way a child stands for these x-rays. We were then sent to an orthopedic doctor at my local doctor's office. He said my daughter had "significant" scoliosis- an S curve of 31 and 33.He was sending her to a large, well-known hospital to have her seen by an orthpdic specialist/surgeon to get fitted for a brace that she would need to wear for the next year or two. When we got to the hopital three weeks later, this new orthopedic specialist wanted his own x-rays done.The x-ray tech at this hospital never touched my daughter or put her in any position for the x-ray. I said,"Shouldn't she be standing up straight?" and he then said to my daughter,"Stand up straight".He was pre-occupied with teaching a new tech how to run the machines, as this is a teaching hospital.Now at the time I didn't think much about this. But I've given it alot of thought recently. Back to that day at the hospital...after the x-ray we went back to see the doctor. He said my daughter didn't need a brace, she needed surgery.He said she had an S curve 41 and 48 (Risser 1 No period yet).My daughter and I just burst into tears. Within three weeks we went from "mild" to "significant" to "severe" and in need of surgery!Why was there such a large difference in the reading of the x-rays?Was it the way my daughter was standing for each x-ray?I asked if we could try the brace for a while and see what would happen. He said "I won't torture her in the brace for 2 years only to end up performing the surgery anyway". But he did say he would try the Boston brace for three months and then take another x-ray and talk to us again about whether or not to proceed with bracing at that point.He also looked right at her and said," There is a possible chance this will work,but not a probable chance."He also said she only has a 20 percent chance of avoiding the surgery.I was all for the 20 percent chance. We both cried the whole 2 hour drive home from the hospital that day!I felt like I was hit with a ton of bricks!She is now wearing the Boston brace 22 hours a day. It's been about 1 month now and she's very good about wearing it. She does not want the surgery and neither do I! Is there anyone out there with a curve in the 40's who opted not to have the surgery?Is there anyone out there who recommends the Schroth program? We were also told Pilates, Yoga, Dance, and Swimming would be good for her by the physical therapist. When I called a certified Schroth doctor to ask about his program, he said NOT to do Pilates or Yoga because it could make her curve worse. I don't know what to do now! HELP!I'm trying to do all the right things for her, but there seems to be so many conflicting theories as to what works and what doesn't. I'd love to just get some perspective from other parents.How do you make that decision to have that surgery when your child looks ok(a little crooked), feels fine(no back pain), and doesn't complain about it? I really don't want that little crooked to turn into a huge crooked that will affect her internal organs as she gets older, but that surgery seems SO SEVERE! I've read some of the posts on this forum and they make me cry when I read about a parent in the hospital a day or two after sugery and they are talking about the muscle spasms and the pain their child is in. I just don't know what the right choice is right now.
    We are getting another opinion from another hospital though. I hope this doctor doesn't want another set of x-rays. That's another thing I
    worry about-all these x-rays. I'm sorry to go on and on, but I really need to talk to someone who is going through the same thing as my family! Any response would be greatly appreciated!Thanks!
    Chris

  2. #2
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    Hi Chris,

    Welcome! You sound so frustrated and confused. I'm sorry for that.

    I understand what you're going through. For several months, my husband would walk up behind our daughter and pull her shoulders back and tell her "chest out, shoulders back" and her reply would always be "I can't". We didn't think anything about it, just thought it was a pre-teen slouching. I took her for her 12 y.o. check up at the family doctor and like always, he checked her back. What we saw shocked us. It was obvious to my untrained eye that she had scoliosis. Doctor agreed, but said she had a "mild" case and that he would monitor her condition, but just to be safe, he wanted us to get x -rays.

    We left he office and went directly for the x-rays. We were told to wait until someone read the x-rays to make sure they didn't need to repeat any of them (which is what they told everyone having x -rays). We waited and waited and waited until I finally asked to speak to someone and made it clear I knew something was wrong and I wanted answers. They told me they had a call into the family doctor and they were waiting for his call before discussing anything with me. I know the technicians aren't allowed to tell you anything, but I made it clear I needed to know. The answer I got was 36 degrees and a sad, sympathic look. When the doctor called back, he wanted to speak to me personally. I told him, "I know, it's bad".

    So we went from "a mild case of scoli which the family doctor will monitor to a case of scoli that is very close to the surgery point' in less than an hour.

    Hang in there and know that you are not alone.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  3. #3
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    I could have written your post, about one year ago.

    My daughter was diagnosed with "moderate" scoli at her annual physical, by her pediatrician. We made an appointment with a pediatric orthopaedic/spine specialist right away because I had a very bad feeling -- I was convinced that her curve was aggressive because it had come up in a year without anyone noticing . . . anyway, we tried bracing during the last school year but learned in March that despite the bracing her T curve had increased into the low 50s.

    She had her surgery June 21 (just a little over two weeks ago) and is doing great. Yes, it is a drastic and serious surgery and I know it is REALLY HARD to come to terms with any of this. But she was facing significant deformity and, possibly, serious pain later in life, so we felt we had no other options.

    Good luck! PM me a phone number or your e-mail if you want to talk more.
    Jill, mom to 14-year-old daughter who had spinal fusion surgery (T3 to L1) June 21, 2010. (Pre-op curves 52T and 30L.)

  4. #4
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    Chris - your post took me back to 2007 - you were me. Remember to breathe. The one thing that I can give you from this side is to be careful how you relate to surgery around your daughter. I was in constant prevent that mode so that when it was no longer an option my daughter was terrified.

    The surgery is no picnic, but the kids seem to rebound so fast. My youngest had surgery Feb' 10. She was not the first to be diagnosed - her older sister was, but her curves were under surgical standards. Her recovery was fast, but she missed 6 weeks of school. Pain meds took care of the spasms and she was off those in her second week home. Back to doing thing by herself little by little to completely by the 6th week. In August she goes in for her 6 month check up.

    My oldest did not believe she had scoliosis even while looking at the x ray. She had no pain or problems, but I was the one who noticed her deformity. She now is still under the surgical numbers in her curves, but is plagued with muscle spasms and back pain. We find out this month if she is going to have surgery - she wants it so badly to relieve her issues. I'm back and the please no no no , but this time I'm keeping it to myself and asking the big questions about outcomes and quality of life issues.

    I guess what I'm trying to say is your not a lone in this or your feelings about it. Please look through the forum - there is so much strenght and knowledge here. I'm glad your going for a second option - I was also concerned about the x rays and boy they have sure had a lot of them (no ones glowing yet), but Dr's always say not to worry about them because there such low dose.

    Best to you and your daughter as you go through this.

    Dee
    Dee - Mother of two daughters, both with scoliosis KateScoliKid (16yo) 52* Lumbar curve
    Fusion Surgery 2/9/10 T-11->L-3 @CHKD Norfolk VA
    Jes (20yo) T 3 -> L 3 w/ Kyphosis

  5. #5
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    Chris43: My 14 yo daughter was diagnosed this past Nov. We are scheduled for surgery the last week of August. Our first indication that there was a problem was severe back pain. We never noticed any posture issues.

    From what I've read from other members on this forum and various other medical websites, it seems like the time for your daughter to have been fitted for a brace was when she was first diagnosed. At this point, considering her curvatures and age, I don't believe it's going to do much good. It may hold the curve or it may not but it definitely will not correct it.

    Physical Therapy, yoga, pilates will not do anything other than to strengthen her back muscles. It will have no effect on the curves.

    Did your daughter recently go through a growth spurt? If so, this might explain why her curves are progressing at a more rapid pace.

    I would definitely seek out a 2nd and 3rd opinion in regards to the surgery. But, if her curves are progressing at a rapid pace, you may have no other option.

  6. #6
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    Hi Chris

    You're absolutely right about being misunderstood. Most people sort of know what scoliosis is but have no idea how severe it can be, that's what happened to us and then it was too late. I've shed many, many tears but it doesn't change what's already happened.

    As others have said, exercise won't help. Unless your daughter just likes to do them, I would not waste her time. We've been there and done that. Bracing is really your only hope. My dd didn't tolerate the hard brace so we tried the Spinecor, she was too far advanced for it to do any good.

    I would definitely get another opinion, especially since you don't sound comfortable with what you've been told. We went to 4 doctors and they each wanted their own xrays, maybe for the very reason you're talking about. Xray exposure is an unfortunate part of this but I don't think it will be detrimental in the long run. The best thing you can do now is to find a really good scoliosis surgeon. That doesn't mean she needs surgery right away, but he will be able to track her progression and you'll have someone ready if and when the time comes. A good place to start would be the SRS list of surgeons. Once you pick one or two, research them and see how many scoliosis surgeries they do and see what others have said about them. This is a surgery you want someone with plenty of experience.

    Depending on how fast your dd is progressing, you may be able to hold off until she's finished growing. I was told girls generally stop growing about 18 mths after they start their period. That would be the ideal situation. The good thing is that your dd isn't having any pain and she's compliant with the brace. Hopefully, time is on your side. I don't really think 41/48 is an emergency, I think most doctors will start talking surgery at this point but won't pressure you to do anything immediately. My dd was at 56/62 and still had a great surgical outcome.

    Take care and hang in there.
    Last edited by Sherie; 07-06-2010 at 11:11 PM.

  7. #7
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    Quote Originally Posted by Sherie View Post
    Hi Chris

    You're absolutely right about being misunderstood. Most people sort of know what scoliosis is but have no idea how severe it can be....

    We all remember having our backs checked in school and/or at the doctor's office....but as parents, no one ever tells us what to look for. I knew what Scoliosis was but had never heard the word Kyphosis before my daughter's diagnosis. We need to figure out how to change that and educate parents before they are in our situation.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  8. #8
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    Bracing/exercise

    I do not think it is fair to assume that exercise or bracing will not help at this point. While beginning bracing with a 48 degree curve may not be ideal, I know of four kids, females between the ages of 10-15, who have either reduced or stabilized their curves bracing/exercise late in the game. One stabilized for three years at 48 degrees, one ready for surgery at 48 degrees-now in low 30's and no longer a surgery candidate as she is done growing, one reduced from 50 to high 30's, and the other reduced from 68 to 60. It may not work for everyone or be a cure all, but it can be done. If you would like to be put in contact with any of them, please PM me.

  9. #9
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    Quote Originally Posted by bas2101 View Post
    I do not think it is fair to assume that exercise or bracing will not help at this point. While beginning bracing with a 48 degree curve may not be ideal, I know of four kids, females between the ages of 10-15, who have either reduced or stabilized their curves bracing/exercise late in the game. One stabilized for three years at 48 degrees, one ready for surgery at 48 degrees-now in low 30's and no longer a surgery candidate as she is done growing, one reduced from 50 to high 30's, and the other reduced from 68 to 60. It may not work for everyone or be a cure all, but it can be done. If you would like to be put in contact with any of them, please PM me.
    This is very misleading, mainly from the standpoint that these apparent successes (not proven by a mile) are four out of how many? Hundreds? Thousands? What are the odds?

    I could challenge each one of these anecdotes just on the basis of the little that is written (some/all of which will prove to be mistaken). There are real issues of how long the brace has been off and if they have to continue PT the rest of their life and if any of these apparent reductions will hold. I do not believe these four are likely what they are claimed. I think bas2101 is mistaken and doesn't have all the facts. And the bottom line is that you can never show it was due to the brace or PT.

    It is not rational to brace a 48* curve with the totality of what is known. Bracing is not a benign treatment. The odds are so stacked against it working that it is impossible to justify.

    BAS2101 deals with many alternative treatment purveyors. She has argued that others besides surgeons are qualified to treat scoliosis, an absurd notion. You will likely not find anyone with appropriate training (i.e., surgeons) agreeing to brace a 48*. You will find fringe folks taking your money to do so.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  10. #10
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    Quote Originally Posted by bas2101 View Post
    I do not think it is fair to assume that exercise or bracing will not help at this point. While beginning bracing with a 48 degree curve may not be ideal, I know of four kids, females between the ages of 10-15, who have either reduced or stabilized their curves bracing/exercise late in the game. One stabilized for three years at 48 degrees, one ready for surgery at 48 degrees-now in low 30's and no longer a surgery candidate as she is done growing, one reduced from 50 to high 30's, and the other reduced from 68 to 60. It may not work for everyone or be a cure all, but it can be done. If you would like to be put in contact with any of them, please PM me.
    Worse than unhelpful. Absolutely stunning. I really can't get over it... had to respond again.

    And you will type this even as against YOUR OWN experience with these conservative and alternative treatments failing to hold you daughter's curve below surgery territory. Not honest in the least.

    I invite you to step out of fantasy land and back into reality. If an invitation will help.

    I think you have been battered and beaten by dealing with this condition with your daughter over several years and can't recognize that you are giving out highly misleading and in fact BAD advice. That's a reason but it isn't an excuse.

    Simply outrageous.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  11. #11
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    I concur with Sheri on possibly getting another opinion. I think the surgeons vary somewhat -- my daughter's doctor said a curve in the 50s was definitely in "his" surgery zone. Also, it went from the low 30s to low 50s in nine months, despite fairly compliant night bracing.

    With her t curve in the low 50s, she was exhibiting a pretty significant rib hump (which resolved with the surgery), and she was starting to look "crooked" walking or running.

    I also wanted to tell you that 16 days out of surgery my daughter is doing very well. We are starting to wean her from the pain meds (since she is not needing them as frequently) and she is getting around, sleeping, etc., great. She is going to be in really good shape for the start of school (which is Aug. 11, where we live).

    Next week she can immerse her incision in bathtubs and swimming pools, so we are really looking forward to doing a little water therapy. She's an athlete and although she won't be able to play club soccer this fall, she should be good to go next spring and if she wants to, she can run cross country this fall (her doctor is okay with the running, just not the contact sports so soon).

    Hang in there!
    Jill, mom to 14-year-old daughter who had spinal fusion surgery (T3 to L1) June 21, 2010. (Pre-op curves 52T and 30L.)

  12. #12
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    Pooka1:

    I am not mistaken regarding any of the four cases I previously mentioned (and I know there are more from reading this forum). I keep in close contact with all three scoliosis patients' parents, and one of the patients is my daughter. I understand there is no way to "prove" it was bracing or exercise that halted/reduced these curves, but then I suppose you suggest that 4 rapidly progressing curves, all 48 degrees or higher in growing children/adolescents, just spontaneously halted/reduced once they began bracing/exercise?

    Perhaps these curves will hold. Perhaps they will not. Maybe they will have to exercise for the rest of their lives. Maybe they won't. Maybe they will choose exercising for the rest of their lives over fusion. Maybe they will choose surgery after they have tried other options. My point was that curves can still be halted/reduced with bracing beyond the ideal bracing period. Does that mean they will? Who knows. Do I know what the future will hold in any of these cases? No. But, then neither does anyone else––braced, not braced, surgery––including you.

    While my daughter has tried many alternative treatments, most I would not advocate for scoliosis. However, I have seen several successes with the Cheneau brace, even in kids with higher curves. Are they all documented? No. Does that mean they don't exist? No. If we all waited around for those studies, we'd be waiting a long time. And, you are correct, I do not believe surgeons are the only qualified doctors to treat scoliosis. But, we have already gone down that road in a thread way back and clearly we disagree. My daughter's medical doctor, Dr. Manuel Rigo, has been specializing in scoliosis for about 25 years in Spain, Israel, Russia, Germany, U.S., and is the former president and a founder of SOSORT. I assume you believe he has no idea what he is doing? That he is unqualified to treat scoliosis patients? He is not a surgeon, but he also is not against surgery, and advocates it when he feels it is necessary. But, he doesn't just jump when the numbers cross a specific line. He considers the patient's needs/wants, their quality of life, their lung capacity, pain, age, Riser sign, flexibility, rotation, deformity etc. He treats patients conservatively, and some patients prefer a conservative route. They deserve that choice.

    I am not battered, beaten or in a fantasy land. I am taking my daughter's condition day by day, as are most of us dealing with scoliosis. I reassess my decisions constantly, and realize that surgery may be our choice down the road. While my choices may not appeal to everyone, and some folks like yourself may find my decisions irresponsible, I will never regret allowing my daughter to carry out her full growth, which has been over 6 inches since surgery was recommended, and she is still growing with a stable, albeit high curve.

    I will continue to relay my own experiences, along with the experiences of others whom I am close to who have chosen the same/similar route as us, people whose x-rays I have seen and that have all been read by orthopedic surgeons specializing in scoliosis. I am not making up information. I am simply relaying what I know. You are discounting methods that you have no experience with whatsoever. Were either of your daughter's braced with a Cheneau brace? Did either of them ever try Schroth? Have you ever even been to a Schroth clinic? Spoken to a Schroth PT? Spoken with a Cheneau orthotist? I would certainly never come here and discount your daughters' surgical successes.

    Nothing outrageous about it. What's outrageous is dismissing options, choices, and others' experiences as outrageous. I am sorry you are so overwhelmed by my response.

  13. #13
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    As a mother witch daughter was diagnosed 5 years ago, I agree with others: to take a second, third .... opinion. Until you find a doctor you trust in.
    You are going to try bracing, and someone is going to tell you that you are loosing your time, but perhaps it is worth a try. You are not in an emergency situation; you don’t need to decide today about surgery.
    In my Country, a lot of doctors, if no most of them, try bracing with those angles and that Risser. We know bracing doesn’t always work, and it is not easy.
    Technicians ask my dd to stand straight, with her feet together when she is going to have the X-Rays

    I wish you luck.


    PS ( Your post make me return to those days…, I found here a lot of information and a lot of very wonderful people)
    2004: Daughter diagnosed at 13 L38º. Risser 0.
    Treatment: Cheneau brace
    2009: Brace free, 18 years old, Risser 5, L25º

  14. #14
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    Quote Originally Posted by bas2101 View Post
    Pooka1:

    I am not mistaken regarding any of the four cases I previously mentioned (and I know there are more from reading this forum). I keep in close contact with all three scoliosis patients' parents, and one of the patients is my daughter. I understand there is no way to "prove" it was bracing or exercise that halted/reduced these curves, but then I suppose you suggest that 4 rapidly progressing curves, all 48 degrees or higher in growing children/adolescents, just spontaneously halted/reduced once they began bracing/exercise?
    I don't believe these claims can be substantiated. And how many cases have you been following that FAILED and reached surgery territory? What's the success ratio? Isn't it 4 questionable cases out of MANY MANY MANY failures? Don't you think it's important to state that?

    Perhaps these curves will hold. Perhaps they will not. Maybe they will have to exercise for the rest of their lives. Maybe they won't. Maybe they will choose exercising for the rest of their lives over fusion. Maybe they will choose surgery after they have tried other options. My point was that curves can still be halted/reduced with bracing beyond the ideal bracing period. Does that mean they will? Who knows. Do I know what the future will hold in any of these cases? No. But, then neither does anyone else––braced, not braced, surgery––including you.
    Some things are known. And they are diametrically OPPOSITE from what you write and imply. Your post is extremely misleading even given the apparent "success" percentage and you know it. It is simply unconscionable to suggest a child with a 48* try a brace with what is known.

    While my daughter has tried many alternative treatments, most I would not advocate for scoliosis. However, I have seen several successes with the Cheneau brace, even in kids with higher curves. Are they all documented? No.
    Why not? I have a guess.

    Does that mean they don't exist? No. If we all waited around for those studies, we'd be waiting a long time. And, you are correct, I do not believe surgeons are the only qualified doctors to treat scoliosis. But, we have already gone down that road in a thread way back and clearly we disagree. My daughter's medical doctor, Dr. Manuel Rigo, has been specializing in scoliosis for about 25 years in Spain, Israel, Russia, Germany, U.S., and is the former president and a founder of SOSORT. I assume you believe he has no idea what he is doing? That he is unqualified to treat scoliosis patients? He is not a surgeon, but he also is not against surgery, and advocates it when he feels it is necessary. But, he doesn't just jump when the numbers cross a specific line. He considers the patient's needs/wants, their quality of life, their lung capacity, pain, age, Riser sign, flexibility, rotation, deformity etc. He treats patients conservatively, and some patients prefer a conservative route. They deserve that choice.
    Why doesn't Rigo claim is Nobel for the RCS? Are surgeons in the US too dumb to realize that Rigo has solved scoliosis?

    I am not battered, beaten or in a fantasy land. I am taking my daughter's condition day by day, as are most of us dealing with scoliosis. I reassess my decisions constantly, and realize that surgery may be our choice down the road. While my choices may not appeal to everyone, and some folks like yourself may find my decisions irresponsible, I will never regret allowing my daughter to carry out her full growth, which has been over 6 inches since surgery was recommended, and she is still growing with a stable, albeit high curve.
    I just find it passing strange that you admit you would not recommend many treatments you tried and yet you are recommending something that has been entirely discredited (bracing a 48* curve).

    I will continue to relay my own experiences, along with the experiences of others whom I am close to who have chosen the same/similar route as us, people whose x-rays I have seen and that have all been read by orthopedic surgeons specializing in scoliosis. I am not making up information. I am simply relaying what I know. You are discounting methods that you have no experience with whatsoever. Were either of your daughter's braced with a Cheneau brace? Did either of them ever try Schroth? Have you ever even been to a Schroth clinic? Spoken to a Schroth PT? Spoken with a Cheneau orthotist? I would certainly never come here and discount your daughters' surgical successes.
    I would bet you do NOT have the whole story on any of those four cases nor will you have going into the future.

    You can't discredit things for which there is evidence in hand. Everyone is able to discredit claims for which NO evidence is in hand. A world of difference there which you can't elide.

    Nothing outrageous about it. What's outrageous is dismissing options, choices, and others' experiences as outrageous. I am sorry you are so overwhelmed by my response.
    What's outrageous is claiming there are options when there is no evidence to support it. For you to mention these four (questionable cases) WITHOUT mentioning all the failures when it means putting a kid in a brace (with a 48*!!) is outrageous FULL STOP. But you were brave to type it, I'll give you that.

    You are knowledgeable and have made good contributions to this forum in my opinon but I don't think you have come to grips with reality of the situation here. In fact I think it's obvious you haven't when you think there are viable options in the face of your own daughter's case if nothing else.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  15. #15
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    "It is simply unconscionable to suggest a child with a 48* try a brace with what is known"


    I would have to agree.

    The only positive it provides is a "feel good" measure for the parents so they can say they "tried everything" and it allows time for the likely reality of surgery to sink in.

    In such a case, I would consider achieving the "feel good" level by substituting some type of exercise therapy in the hope that it can temporarily stave -off further progression and allow skeletal growth. In the mean time, the parents should talk with others who have had surgery and try to lower the anxiety level in the child (and themselves). But the likelihood of surgery in the future seems to be VERY high for a skeletally immature 48 degree curve (see attached).
    Attachment 673

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