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Chris43
07-05-2010, 09:34 PM
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

Snoopy
07-06-2010, 06:26 AM
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

Fingers Crossed
07-06-2010, 10:03 AM
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.

ddb
07-06-2010, 12:48 PM
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

Gryffindor
07-06-2010, 10:10 PM
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.

Sherie
07-06-2010, 11:09 PM
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.

Snoopy
07-07-2010, 05:34 AM
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

bas2101
07-07-2010, 06:20 AM
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.

Pooka1
07-07-2010, 06:34 AM
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.

Pooka1
07-07-2010, 07:01 AM
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.

Fingers Crossed
07-07-2010, 08:26 AM
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!

bas2101
07-07-2010, 09:06 AM
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.

AILEA
07-07-2010, 10:30 AM
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)

Pooka1
07-07-2010, 11:13 AM
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.

concerned dad
07-07-2010, 12:21 PM
"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).
673

Pooka1
07-07-2010, 12:44 PM
I think bas2101's brain knows the score. I think her heart has yet to accept it for whatever reason. She is clearly struggling and I'm sorry for that. I think her choices to date have not compromised her daughter's case but that would not necessarily be true of the next parent/kid which makes her post truly reckless.

What you do with your own child is one thing. To completely mislead an innocent parent and unnecessarily torture a child with a brace is quite another. The odds are stacked way in favor of failure and bas2101 knew it but didn't type it. Unconscionable. There is a limit and this is over it by a mile.

Outrageous behavior.

mamamax
07-07-2010, 12:54 PM
It may be worth a consult with Beatriz Torres in California. She is a scoliosis patient herself, spinal fusion at age 19, licensed physical therapist, and fully trained in both the old and the new Schroth. http://www.scoliosispt.net/

There is also a Dr. Moramarco who was once recommended to me by Dr. Weiss himself: http://scoliosis3dc.com/

bty - good to see you CD.

bas2101
07-07-2010, 12:59 PM
Just because a claim isn't a published case, does not mean it cannot be substantiated or is untrue. Just because I mention successes does not mean that I am unaware of, or hiding the failures. I am quite aware of the many failures that exist in watching and waiting, bracing, and surgery. I was merely relaying that there do exist kids braced with moderate to severe curves and some (whose x-rays are attested to by orthopedic surgeons, not me) have had success with stabilization or reduction. It is possible that others may also have such success, even if the odds are against them, and I leave it to the parent to do further research and decide if they want to take that option. I certainly don't assume that anyone is going to make a decision based solely on my post. But, at least the option is out there. Every time you discuss the successes of your daughter's surgeries, do you include a disclaimer about all the things that could have gone wrong or that might go wrong in the future? No. And, no one expects you to.

I never claimed Rigo has all of the answers or that he solved scoliosis. Where are you getting this from? He is a conservative scoliosis practitioner who has been treating patients for years, some with bracing success, some who have gone onto surgery. And, he will brace a low Risser, skeletally immature, flexible child with remaining growth, even if they have a moderate or moderate to severe curve. He is certainly not a fraud looking to swindle people's money. He is an expert in scoliosis and is very upfront about the possible outcomes of his patients and promises nothing. I don't think the U.S. surgeons are too dumb regarding Rigo's method of treatment, I just believe they are not all that aware of it. Just because the U.S. surgeons don't know much about a treatment, does not mean that it is not a viable option. There is a big world out there. No one has all of the answers with scoliosis. No one, or we'd all be banging that door down.

In the above mentioned cases, there is evidence in hand, it's just not in your hand. Tell the mother how "unconscionable" she is for bracing her 14 year old daughter with a 48 degree curve, a girl who was told she had to have surgery (not Chris43, another mother) but whose curve is now in the low 30's. She is out of surgery territory and is now skeletally mature. Tell the mother how unconscionable she is for bracing her 8 year old with a mid-50's curve who was told she needed growing rods with later fusion, who is now in the high 30's three years later and under orthopedic care by an orthopedist who advocates for the Cheneau brace. You've already insinuated that my decisions are ridiculous, which to some they may be. But I do not see how having surgery at 12 1/2 when my daughter was Risser 0, pre-menarche, and 6 inches shorter (this was 2 1/2 years ago and she still growing) is more conscionable than trying bracing and keeping the option for surgery open for the future.

Nothing brave or reckless about what I have typed. Just putting it out there. There is no reason for a mother with a 14 year old daughter (Chris43, or anyone else for that matter) NOT to know that this has worked for some kids in a similar situation. Does it mean it will work for her daughter? Who knows. Does it mean she even wants to make this choice? I can't answer that. But, at least she is aware of it and can decide for herself whether or not it is an option for her child. I would have killed to have this information when my daughter was at 48 degrees. Her curve reduced 8-10 degrees after being braced at 68T. I only wonder where her curve would have ended up if she were braced at 48T. Having options is facing reality, even when those options are not ideal. Closing doors is unconscionable.


And, no, I am not "struggling," just taking it day by day.

Pooka1
07-07-2010, 01:16 PM
Just because a claim isn't a published case, does not mean it cannot be substantiated or is untrue.

That's what all the people who only have faith and no evidence say.

And when you say surgeons might be unaware of something IN THEIR FIELD you are accusing them of being incompetent. All of them. That fails on its face.

Next.

Pooka1
07-07-2010, 01:19 PM
And, no, I am not "struggling," just taking it day by day.

You are still obviously struggling with the bitterness over the realization that surgeons are the only game in town and they don't have an answer you personally like. Note that the fact that surgeons may not have all the answers do NOT mean any alternative purveyors do. That doesn't follow logically in the real world.

bas2101
07-07-2010, 01:36 PM
No bitterness, just believe that both surgeons and alternative purveyors in scoliosis treatment do not know all there is no know about this disorder, which is why there are options. Some options work for some, some for few, some for none.

Disagreeing with you does not equal "struggle."

The faith versus science discussion has been beaten to death on this forum. Not going there.

Pooka1
07-07-2010, 02:45 PM
No bitterness, just believe that both surgeons and alternative purveyors in scoliosis treatment do not know all there is no know about this disorder, which is why there are options. Some options work for some, some for few, some for none.

The fact that nobody knows all there is to know about scoliosis is obvious.

It is not a logical stepping off point from there to conclude there are then options. Rather you would be on firmer ground to conclude that there are few options because of a lack of knowledge. You might also conclude there are "apparent" or "perceived" or "hoped for" options which really aren't options at all.

To date, only watching/waiting and surgery have any clearly demonstrated evidence of efficacy. Denying this point is to admit being unfamiliar with the facts. That is not to say bracing or PT can't be shown in the future to be effective. It may be that these things are effective but just too damn hard to study and show it.

Pooka1
07-07-2010, 02:54 PM
Disagreeing with you does not equal "struggle."

You struggle with facts and reality, not me.

Chris43
07-08-2010, 12:10 AM
I'm not only new to the whole scoliosis thing, but I'm also new to computers.I'm not sure how to respond to each one of you individually.I'm going to assume you can all read this, as you responded to my last post. SNOOPY: Your story sounds so similar to mine. Life just changed so quickly with that diagnosis.I wrote that this disease is misunderstood, and you and SHERIE agreed.I was one of those people who knew a girl in Jr. High who wore a brace. I didn't know her well, so I never asked about it. My impression of scoliosis was that the worst case scenario was to wear a brace.I had no idea the brace was painful. I also had no idea that there was even such a surgery for this condition!Why aren't parents told about this and asked about this being in the family(my father had slight scoliosis-nobrace-exercises only-back in the 40s)when they have a baby.They tell us to watch our children for so many things these days they almost make you feel neurotic. For such a serious disease, it's not really out there in the media much.I think that absolutely has to change!!!I have found that nurses who find out my daughter has scoliosis have the best understanding of what your child may have to go through, but the average person just says things like,"So she has to wear a brace for a couple of years-big deal. Why are you so upset?"I really want to scream at those people! I don't know what can be done, but someone needs to take this and make it more public.Parents need to know what to look for. I thought my daughter was just standing in that teenage posture too. But she really didn't know what straight felt like.
Anyway, thank you SHERIE for sharing the pictures of your daughter. She looks great!I hope she has a wonderful recovery.
FINGERS CROSSED:I can't thank you enough for responding to me, especially since your daughter just had her surgery. I absolutely would love to speak with you in the future, after your daughter has recovered.I don't want to bother you now. My E-mail is Laundryfor5@aol.com.When she doesn't need you all of the time and you feel comfortable enough to spend some time writing,I'd love it.I really need to know from a mom how difficult, or how well the surgery went.Thanks!
DDB: I love when you wrote "Remember to breathe"! YOU know me well. That is exactly how I feel. I must be alot like you because I think it's already too late to take your advice. I've been so pre-occupied and determined to find a way not to have surgery, that I think my daughter is now very afraid of that option. I don't know how much to tell her about the surgery. I don't know if I should be preparing her for that possibilty yet. The doctors are bracing her 41 and 48 curve, so I haven't begun to let the other option come into play yet.She knows it could happen, but she keeps saying she doesn't want it.That's probably from me obsessing about trying to exhaust every other option-proven or not proven.I can't believe you may have to go through the surgery a second time with your other daughter. OH MY GOSH-How do you find the strength?I hope your other daughter will not have to have the surgery, and can find a way to ease her pain some other way. Keep me posted.Best of luck!
GRYFFINDOR:Thank you also for responding.It must be a very difficult time for you right now awaiting your daughter's surgery in Aug.There must be alot of pre-op procedures. How does your daughter feel about it? Does she really understand how difficult the recovery is? How do you prepare for it? I can imagine it stops your entire family in it's tracks. Siblings must also be affected. Do the surgeons let you plan these surgeries? I would imagine that most people would want the surgery done over summer vacation, so the child doesn't miss too much school. Is it an option? I ask this because in my own situation I have identical twin boys going into their senior year in high school. I was very busy trying to help them find the right colleges to apply to when this all happened to their little sister. Senior year is a very difficult and busy year especially if you have twins. I am trying to figure out if my daughter ends up needing surgery, would the doctors let us do it next summer? Does the surgery need to be done right away? I can't imagine trying to help my boys with applications and financial aid forms when their sister is recovering from that surgery. This is definitely life-changing for the whole family! I'll keep your daughter in my prayers. Good luck to you!
POOKA1 and BAS2101:I feel like I've entered into a family fued here!I can tell that you are both very passionate about your experiences.POOKA1 the doctors are bracing my daughter with the 41 and 48 curve in a Boston brace for 22 hours a day. I had the feeling the doctor was doing that to appease me and give me and my daughter time to wrap our minds around what was happening.We will see him again in Aug. He said he will take two x-rays-one in the brace and one out of the brace.If he sees any progression at that time he will discuss surgery with us. He gave us a 20 % chance that the brace will work to prevent progression. I'll take it. I don't think exercise and the Schroth program could hurt.As most of you have said-try everything. You are a voice of reality though. Based on everything I've read and heard, my daughter may need that surgery in the end.I understand that. I don't think I'm ready to accept that though. I haven't gotten there yet.
BAS2101: You are the voice of hope for me. I was getting really sad thinking that there was no way to avoid the surgery and then I read your response.I know there may not be alot of documentation advising exercise programs and claiming that bracing will work for everybody. But I do believe there are exceptions and success stories out there. It was nice to hear about them.I am not saying that surgery is out for us. I just wanted to see if anyone out there did have a conservative treatment that worked in their particular case. The one thing I realize now is that scoliosis is really an individual diagnosis, as each child's body is in a different stage of development,and each curve is so specific to that child. Different bodies, different bones, different muscles can each respond to different treatments in different ways.So you gave me hope-Thank you!POOKA1:I know most children with scoli end up with the surgery and the surgery is very successful. You are my reality check. Just dump a bucket of ice cold water on me when I start talking crazy. I do still need a little time to get use to all of this, so be patient with me. I need to know the facts, but I also need a little hope that this brace will do the job for my child. I'm hoping she's an exception to the studies.Thank you for all of the info you gave me. You definitely sound like you know what you're talking about!PS My daughter just started her period. Does that change her Risser? Are we better off now?I don't know if you can answer those,but I thought I'd try!
Thanks again everyone for all of your kinds words and advice! I'll keep checking in.
Chris

Snoopy
07-08-2010, 05:32 AM
Hi Chris,

Jamie was diagnosed with Kyphoscoliosis (both Kyphosis-forward curve-and Scoliosis) when she was 12 y.o. and was placed in a Milwaukee brace.:eek: We did our research on all the options before we saw the first orthopedic surgeon and we decided that being prescribed a Milwaukee brace would be the worst thing the doctor could tell us. Even though that's what the doctor told her, she never asked "why me?" I told her from day one that God chose her to have Kyphoscoliosis because she was a strong young lady and could not only handle it, but she was a person who would share her story and therefore educate people. I feel that is part of our responsibility as a family dealing with Scoliosis. That's one of the many reasons I'm still on this forum even though it's been almost 7 years since Jamie's diagnosis and 6 years since her spinal fusion.

Like you've already discovered on your own, every child and every case of Scoli is different. You'll also learn that every doctor is different as well as every surgery. Trust your instincts. If you feel better trying a brace, go for it, it can't hurt, right? I did the same thing. Jamie tried two different braces and just couldn't adjust to either one and we realized early on that her curves were not going to stop progressing, but at least we knew we tried. With your duaghter's curves being so large already and just starting her period, wearing a brace might actually help hold the curve as it appears she still most likely isn't done growing. Make sure the orthopedic doctor is x-raying her hand to see if she is done growing. Most girls don't reach skeletal maturity until about 2 years after they start their period.

Hang in there and remember to take care of yourself. Keep asking questions so you can make the most informed decision, no matter what that might be. You might want to reccommend SpineKids to your daughter. It is a forum similar to this one, but it is mostly kids and teens on the site.

Mary Lou

bas2101
07-08-2010, 06:14 AM
Chris,

Thank you for your thoughtful reply. I really wish the best for your daughter.

:) Brooke

Pooka1
07-08-2010, 06:26 AM
For such a serious disease, it's not really out there in the media much.

It is serious for the 1 in perhaps 1,000 who need surgery. It is still serious for those who are braced because bracing is a HARD treatment and because some of these curves which are apparently held (or stay by themselves) below the surgical threshold at maturity nevertheless go on to reach surgical territory even as young adults.

Only about 10% of people ever need treatment - the rest of the curves are too small. Many people have such small curves that they never realize they have the condition. Between 2% and 4% of the population has scoliosis but I've seen some say it is possibly 10% if you add in adult onset and degenerative cases. Because most people with scoliosis need no treatment and exceedingly few need surgery, it is actually rather benign I would say considering all cases and is consistent with why it can affect such a large population and yet most people still haven't heard of it.


Anyway, thank you SHERIE for sharing the pictures of your daughter. She looks great!I hope she has a wonderful recovery.

That is the work of an artist. He is one of the top surgeons in the world dealing with scoliosis.


I am trying to figure out if my daughter ends up needing surgery, would the doctors let us do it next summer?

If you have a top guy with several cases (because he is a top guy) and don't schedule it early enough, you might not get an optimal time like beginning of summer or over a holiday. You can plan for this.


Does the surgery need to be done right away?

It doesn't sound like you are in an emergency situation with your daughter. At 41/48, as I said before, unless there is progression, I doubt you will find a surgeon who will want to operate. She could hang there for months or years. That said, there seems to be a few surgeons who will operate earlier than the widely accepted thresholds to try to save levels. Again, I would ask the surgeon about this... it might matter if you can save some lumbar levels in terms of flexibility.

Where is your daughter's curve? You may have mentioned this. If so, I apologize.


POOKA1 the doctors are bracing my daughter with the 41 and 48 curve in a Boston brace for 22 hours a day. I had the feeling the doctor was doing that to appease me and give me and my daughter time to wrap our minds around what was happening.

That would seem to be the correct conclusion if you look at the data that Concerned Dad posted.


We will see him again in Aug. He said he will take two x-rays-one in the brace and one out of the brace.If he sees any progression at that time he will discuss surgery with us. He gave us a 20 % chance that the brace will work to prevent progression. I'll take it. I don't think exercise and the Schroth program could hurt.As most of you have said-try everything. You are a voice of reality though. Based on everything I've read and heard, my daughter may need that surgery in the end.I understand that. I don't think I'm ready to accept that though. I haven't gotten there yet.

If your daughter doesn't mind the brace then no problem (other than cost). One of my daughters wore a brace. I thought that was a kick in the teeth because she went on to have surgery. My other daughter luckily escaped brace treatment. Her curve never moved less than 5* a month and even though she was in bracing range, neither surgeon wanted to brace her. I suspect they realize that fast moving curves are rarely if ever held by brace and they didn't want to torture her.


POOKA1:I know most children with scoli end up with the surgery and the surgery is very successful.

Actually, as typed above, it's the rare case that progresses to surgery. These cases are over-represented here on this forum because people are reaching out for help in dealing with it. Most of the rest don't need support nor even any treatment.

The surgery is very successful and very safe, especially now with the real-time nerve monitoring. During surgery, they know if a nerve is being impinged and immediately back off. This has reduced nerve injuries to truly minuscule levels. And many/most nerve injuries that do occur heal completely as I understand.

Kids bounce back... my kids returned to school after 3 weeks (Willow) and 3.5 weeks (Savannah). They both look and feel normal and scoliosis seems to be behind our family now. They are not expected to ever need any more surgery and are said to be back in the general population for risk all future back issues. I'll take that.


I do still need a little time to get use to all of this, so be patient with me. I need to know the facts, but I also need a little hope that this brace will do the job for my child. I'm hoping she's an exception to the studies.Thank you for all of the info you gave me.

Everyone understands this. I'm sorry for every patient and parent who has to deal with this. It is mind blowing. Your daughter could be an exception. As I mentioned earlier there are 3 cases just on this group about people who got to the low 50s and hung there for a few decades (NOT due to bracing in at least one case). But you have to consider the damage that is done just having a curve due to uneven vertebral loading over time. It seems for even moderate curves, if the progression doesn't get you the ancillary damage and associated pain might. It's hard to know if anyone is ever out of the woods though certainly some people are. Identifying them is the trick.


PS My daughter just started her period. Does that change her Risser? Are we better off now?I don't know if you can answer those,but I thought I'd try!

As Mary Lou said, it's usually 2 years after menarche when the skeleton is mature. But it is variable enough that you should get the hand radiograph like Mary Lou said in order to get a true idea of maturity. Risser is inexact.

Good luck. It's a hard road but still doable. You and your daughter will handle this and be stars. :)

flerc
07-08-2010, 09:51 AM
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?

Chris, I understand what you feel. My 16 years old daughter has a thorax lumbar curve of 56º as it can be seen in the x rays of February 2010, but it was 47º in August 2009 and 57º in February 2009. Nobody knows what happened.
When she was 14 y a surgeon told us she was 43° but in fact she was 54°.
We are also trying non surgery ways. I can talk to you about great therapies during growth (and it seems in adults too) as Fed Method, but I think you have a great option with Beatriz Torres (as Mamamax said to you) who not only knows about Schroth but is also a really good person. Take in mind that surgeons only know about braces and surgery, but other professionals also knows about scoliosis, for instance PT knows about managing connective tissues, ostheopats about structural issues.. but nobody knows enough about scoliosis!.
I think that brace is a good option (specially combined with other alternatives), but chances are greater if it is used under EDF concept http://www.scoliosis.org/forum/showthread.php?t=10607. I don’t want to confuse to you; it’s only an opinion from someone without any medical knowledge.

It's difficult, but try to think and feel by yourself. Anyway you are not alone.

concerned dad
07-08-2010, 10:04 AM
Chris 43
I feel the anguish in your post and it brings back the memories of when my daughter was first diagnosed. I have a few thoughts to offer: take them with a grain of salt because each circumstance is different

Yesterday I posted a chart from a paper written by Sanders in 2008 and I made the comment:
But the likelihood of surgery in the future seems to be VERY high for a skeletally immature 48 degree curve (see attached).

There is an accompanying table that is necessary to reference: it shows the different skeletal maturity stages.

You originally said your daughter was pre-menarche, Riser 1, and 14 years old. You updated that to say that she just started menarche. What is important to note is that Riser sign, Age, and menarchal status are NOT the best predictors of skeletal maturity. A hand xray showing the changes in the joints of the fingers is much more reliable.

Nevertheless, that MAY put her in Stage 6 or so on the attached chart. Although this chart is based on a VERY small sample size (note the large confidence intervals), it suggests the possibility that her curve may not progress (which is in contrast to what I cited yesterday).

This does NOT mean bracing will help hold the curve. I take this to mean that DESPITE bracing, the curve may hold (though I respect the fact that others would disagree).

I just wanted to post this here to correct my miss-statement about the certainty of surgery and give you some more food for thought.

Perhaps you might consider some advice of having a physician assess skeletal maturity based on a hand xray and also address your concerns about the difference in the two most recent x-rays (the one showing 33 degrees and the one showing the more concerning 48 degrees) There is a world of difference between the two readings: if the 33 is accurate then, at 14, she may be “out of the woods”. Make sure you are seeing someone who specializes in scoliosis.

Many months ago I offered a reading list (http://www.scoliosis.org/forum/showpost.php?p=84649&postcount=21)discussing bracing
If you would like copies of any of the technical papers let me know.
There are other opinions offered in the entire thread (http://www.scoliosis.org/forum/showthread.php?t=9486)you may want to read

As you have gathered, it is a HUGELY controversial subject.

For me, I would NOT put my 14 year old daughter w/ a 48* curve through the burden of bracing with the knowledge that it only had a very small chance of helping prevent surgery (and you can read a summary (http://www.scoliosis.org/forum/showthread.php?t=9314)of our experience here)
If she had a 25 degree advancing curve and were 12, I might have a different opinion. Perhaps, in the end, since she is 14 and since evidence suggests compliance w/bracing is important, you might encourage her to participate in making the decisions.

Gryffindor
07-08-2010, 12:50 PM
GRYFFINDOR:Thank you also for responding.It must be a very difficult time for you right now awaiting your daughter's surgery in Aug.There must be alot of pre-op procedures.

There were a few pre-op procedures. So far she's had a CAT scan, an MRI, various X-Rays, 3 visits with 3 different orthopedic specialists (didn't like the first two), and an echocardiogram due to a heart murmer (everyone on my side of the family has it). All of the tests came back fine...except for the scoliosis diagnosis and it's rapid progression.

How does your daughter feel about it? Does she really understand how difficult the recovery is? How do you prepare for it? I can imagine it stops your entire family in it's tracks.

My daughter is actually excited about the surgery. She's done probably more research on this subject than I've been able to. We've viewed together post op photos and discussed what we see in them. She's even gone so far as to watch an actual surgery online. Personally, I can't do that.

We've been discussing recovery a lot due to her surgery running into the upcoming school year. She HATES taking pills and that's going to be a hurdle that we'll have to get over.

Both my daughter and I have been preparing ourselves for this journey. My husband, on the other hand, prefers to stick his head in the sand. We're working on trying to get him more involved so that he doesn't completely lose it when we're at the hospital. He doesn't handle medical situations well.

Siblings must also be affected.

I'm fortunate in that I had my children 7 years apart. My daughter having the surgery is my youngest. My oldest daughter is 21 and has a child of her own. She had her own medical situation as she was born 3 months premature. She spent the first 3 months of her life in a Neonatal ICU. Luckily, she does not have scoliosis (then again, neither does anyone else on either side of our family so this is really out of left field for us).

Our biggest hurdle with her was trying to make her understand that this wasn't a cosmetic surgery and was absolutely necessary to improve her sister's condition. I still don't think she fully grasps what we're about to embark on, but, she has her own apartment and her own family to worry about.

Do the surgeons let you plan these surgeries? I would imagine that most people would want the surgery done over summer vacation, so the child doesn't miss too much school. Is it an option? I ask this because in my own situation I have identical twin boys going into their senior year in high school. I was very busy trying to help them find the right colleges to apply to when this all happened to their little sister. Senior year is a very difficult and busy year especially if you have twins. I am trying to figure out if my daughter ends up needing surgery, would the doctors let us do it next summer?

We're going through the Shriners Hosptial in Salt Lake City, UT and are pretty much at the mercy of their availability. Acceptance into their program was absolutely necessary for us as we do not have any health insurance and our state can't decide if we're poor enough for Medicaid.

If you have private insurance, you are still going to be at the mercy of the surgeon's schedule but you should have some freedom in choosing a surgery date if it comes to that.

As for school, that's a thorn in my side. Last year, after my daughter's diagnosis and having to go to several different medical appointments, her high school decided to sic their truancy officers on us......even though we had provided them with several doctors notes. It took the threat of our suing them for discrimination due to our daughter's disability (yes, it is considered a disability) to get the to ease up. They kept sending us letters threatening to send us to jail!:eek:

This coming school year starts the first week of August. Her guidance counselor, who was our advocate at her school, was laid off at the end of the last school year. He was able to set us up with her schedule for this year and provide us with the teacher's names. He said she did not qualify for homebound instruction due to the number of days she will be missing will be under 60 (even though the district's website clearly states 30). So, she'll be going to school for the first two weeks prior to the surgery.

I'm going to set up a meeting between all of her teachers, school principal, school nurse, guidance counselor, attendance clerk, truancy officers and vice principal to make sure that we have a complete understanding of how the school year is to progress. Her surgeon has provided us with a letter stating she would be out of school for 6-8 weeks. I've already emailed all of the teachers and informed them of the situation and asked that they start providing her with ALL of her homework from late Aug through the end of Oct from day 1 so she can get started on all of her assignments prior to leaving for surgery. I haven't heard a word from any of them.:mad:

My goal is to have her recovery period as just that....time for her to recover. She won't be able to do any school work, much less turn it in, while she's in the hospital. It will likely be at least 2 weeks after we return home from SLC until she'll be up to attempting any assignments.

For the time she's at home we're supposed to go to the school each week and pick up and turn in her assignments. I'm going to try to streamline this into emailing everything back and forth. We have a scanner and can scan her assignments and email them back to the teachers. Hopefully, her teachers will allow us to do this.

In all honesty, I'm starting to second guess myself on the school issue and am beginning to wonder if it might be more advantageous for her to skip this upcoming semester. But, each time I've brought this up with our daughter she's dead set against it. She plans on graduating early and doesn't want to screw up those plans.

At this point, it's going to be one of those wait and see issues. We should know more after I set up that meeting with all of the school officials.

Does the surgery need to be done right away? I can't imagine trying to help my boys with applications and financial aid forms when their sister is recovering from that surgery. This is definitely life-changing for the whole family! I'll keep your daughter in my prayers. Good luck to you!
Chris

The surgery timing is going to be entirely dependent on your daughter's condition. If her curve begins to progress rapidly you may need surgery more quickly to avoid other medical complications.

My sincere recommendation to you is to not let it progress to the point where your daughter is in pain. This is where our journey started.....with a visit to the ER due to severe back pain. She had complained a little over the summer about mild back pain but we didn't think much about it. A few months later she was curled up in a ball on her bed crying due to the pain in her back. The ER visit is when we first found out she had scoliosis.

Chris43
07-08-2010, 10:39 PM
AILEA: WOW! I'm getting so much info. here. So do I understand that your daughter had a 38 curve in 2004 and a 25 curve in 2009 after only bracing her for that time? She has not had the surgery and did not do any exercise program or Schroth program? She wore the brace faithfully, and her curve actually got better?This is what I'm hoping for, but I may have misunderstood what you wrote.I was told by the doctors and by many people that her curve would never improve from what it is now.What do you attribute your daughter's success to?I'm just curious about all of the cases I read here.Yours is a case that gives me hope again!I am finding out that all of you who have responded to me are so kind and so helpful. I really appreciate the kind words and the support. I really needed it.

MAMAMAX AND FLERC: You both mentioned the alternative program that I was thinking of trying after I get a second opinion. I actually spoke to Dr. Moramarco in Woburn, MA. I liked what I heard! I was so happy to see someone who actually knew about this Dr. I don't want to go to a quack! I thought I would get one more opinion to see what these x-rays are actually reading. Is it 31 and 33 or 41 and 48? Then I would decide where to go from there. We are bracing right now and we would like to try this Schroth program with Dr. Moramarco. My daughter would like to try it too. As I have said before, she really does not want the surgery! She is being so good about this brace. I've read alot of posts that mention the children not being able to tolerate the brace. I hope I'm not speaking too soon, but she really is being good about it.Everyday-22 hours a day-tightening it beyoond the markings that they told her to. They suggested that she "try" to get beyond the markings before her next appointment, and within the first 2 weeks she has made sure it is as tight as she can pull it!She never complains about that, but she does always say that she does not want that surgery.I hope I haven't scared her too much,by trying to find an alternative solution. I'm really worried about that!

FIREFLYMD: I'm not really sure about what the VBS stapling is.Could you explain? I know you said you tried everything to avoid surgery too, but ended up with that option. You also mentioned a doctor in Boston. That is the area I am in. Children's Hospital is the place we were sent to first. My second opinion at the end of this month will be at Mass. General Hospital. I'm not sure which hospital to go with either. I have many people tell me Children's is the best, then I have others tell me Mass. General.Do you have an opinion on these two? You seem to have traveled very far to find the right doctor for you. You went to different states. Is that what most people do? I just figured Boston has so many good hospitals I would be fine choosing among them. But it seems that I may be wrong. Should I be going elsewhere?

SNOOPY:Thanks for the info. on Spinekids. I asked my daughter to try it and she said "NO WAY". As I said before she's good about the brace, but not so good about the whole scoliosis thing. I think she 's just not ready to face it yet. I'm still struggling myself as you can all tell. I just hope I haven't scared her too much. I've tried to not give her too much info. about the surgery, because I don't want to scare her. Maybe it would be better for her to learn it all. I think she still needs a little more time though. Treading carefully at the moment!

GRYFFINDOR: I love your screen name. We are big Harry Potter fans!I also loved your comment about your husband sticking his head in the sand.I have no support from mine. He hasn't been to any of these appointments with me. Although, I never expected any of the appointments to be as devastating as they turned out to be. So I'll be fair to him. He does want to be at all of the upcoming appointments.His opinion is "If she needs the surgery, she needs it. You need to deal with that!" He doesn't even know what the surgery entails, because every time I try to tell him about how severe the surgery is and how long the recovery is, he won't listen. He doesn't want to know anything. His feeling is "Why worry about something you can't control?"I'm the complete opposite. I want to know everything about it, so I can make an educated decision! It's driving me crazy! Thank God I was told about this forum, so I can at least bounce things off of you all, learn about your stories, and at least have some input from someone else going through the same things as us. My husband wants nothing to do with this either.Anyway, I'm so sorry to hear about your problems with the school. I can't believe they would do that to you even after you had doctor's notes about the situation. Again, I feel that this is a problem, that most people don't understnd the severity of this disease!Does your school have any idea how upsetting this is emotionally for your family?How painful it is for your daughter?How difficult and long the recovery will be for her?Oh My Gosh! They are a school, and should be educated on this.All schools should be made aware of this!POOKA did say that it is a very low percentage of children that actually end up with the surgery, but still I think the education should be out there as it is for other obscure childhood diseases, especially in a school!I hope this all works out for you. I hope the surgery goes well for your daughter too. I'm glad she wants it. I don't know how or when a child reaches that point of acceptance, but I hope if my daughter has to have it, she can find peace with it too. Good Luck!

CONCERNEDDAD: Thanks so much for the charts and sharing your story.So your daughter had no brace, no exercise program, and no progression. That sounds great to me.You also sound very gutzy and lucky!I am glad your daughter made out so well! Your charts have made it clear to me that the odds are stacked against my daughter.But I still have hope!I have a huge issue with the discrepency between the x-rays(31 and 33 or 41 and48).I also question that Risser of 1. As I said she just started her period. The doctor did take a hand x-ray and told me that all of her joint bones were closed except for the tips of her fingers. That meant she had a "little" growth left. That was my understanding of it. I had no idea what a Risser of 1 meant. Again thanks for that chart! I'm not a doctor, but I would think she would be at a Risser higher than 1. My family is very petite. Do doctors take that into consideration? My daughter is the same size as me(5feet). All the women in my family are about that size. When I was 14 I was about 5 feet tall and 90 pnds. My daughter is 5 feet tall and 85 pnds. I stayed that way all through high school. Does this matter? The doctors never asked me about any of that. They did ask how tall my husband was. He is 6ft. tall. The doctor said my daughter should be about 5-5. I don't know about that! The pediatrition always estimated my boys to be about 5-8 or 5-9. They are 17(twins) and they are done growing and they are 5-5!I doubt their little sister is going to be bigger than them. She is very petite, as I was.What do you think? Does any of this matter? I do appreciate your input.

Again, thank you to all of you for helping me sift through all of the info.

Chris

Pooka1
07-09-2010, 06:03 AM
As you have gathered, it is a HUGELY controversial subject.


Yes and not just among us unwashed masses but also among the experts (the surgeons). That's a sign that evidence is woefully lacking in this field and that claims otherwise are false.

The problem with bracing is that there is no good evidence it works. But that doesn't mean it doesn't work. Some things are just challenging to study and bracing research is plagued by confounders like compliance and inadvertently including connective tissue disorder cases which might be "ringers" bringing the observed efficacy down. Because it is such a hard treatment, all you can do is go with what little is known. The best guesstimate of bracing efficacy I am aware of is the following:

70% are unnecessarily treated (i.e., would not have progressed anyway)
20% bracing failure
10% possibly stabilized (progression halted)

I think this question of odds is very interesting and there will be a wide range of response if you asked at what percentage would you try a particular treatment.

For me, at ~10% wherein you are left with a ~30* curve say that still might become surgical even a few years out (one surgeon recently labeled this situation not unusual if you can believe it), I would do it only if my kid wanted to try. Were I to decide this for my kid, I think it would have to be upwards of a 95% chance to avoid fusion for life to wear a 23-hour per day brace. For night-time braces, 10% might be reasonable.

But I am coming to understand that it is not possible to claim bracing can avoid fusion over a lifetime. I think it is possible that bracing only delays rather than avoids surgery in many if not most of those ~10% of cases where bracing might have worked to hold a curve. But even if all those 10% went on to have fusion, bracing would still appear to be a big win because of the 70% who were braced but really didn't need to be. And progression is one thing... ancillary damage from simply having even a moderate curve over the years is another that I am not so sure pediatric orthopedic surgeons mention much. I think they know it though.

I know during my daughter's brace treatment I was focused on one number... 50*. It was my understanding that If she made it to maturity under 50* then she would never need fusion. I have come to learn how wrong that understanding was for so many reasons.

It's eye opening to read the testimonials from adults who were braced as kids, were told they were out of the woods, and STILL required fusion, sometimes as early as a young adult. There are several on this group though this group is not an accurate cross-section through the population with scoliosis. They may be part of that ~10% who were actually helped by bracing during adolescence or they were part of the ~70% who really didn't need bracing but were braced anyway. Who knows.

Many more questions and hypotheses than answers at this point.

concerned dad
07-09-2010, 03:24 PM
Chris you say:

"Your charts have made it clear to me that the odds are stacked against my daughter.”And

"The doctor did take a hand x-ray and told me that all of her joint bones were closed except for the tips of her fingers.”

I am not sure I read the charts the same way as you do (or even the correct way). Please consider taking those charts (or if you want I can email you the whole paper) to your doctor and ask him in what “stage” your daughter falls. From the sounds of things, he maybe very familiar with that research and may be able to explain its’ strengths and weaknesses. It might even put your mind at ease a bit if you find that her skeletal age is advanced (sure sounds like it if only her distal radial physis is open). Combine that (more advanced skeletal maturity) with a possible error in her xray (maybe the true number is closer to the first reading) and you could be in a different boat.

Pooka, you say:
"I think this question of odds is very interesting and there will be a wide range of response if you asked at what percentage would you try a particular treatment."

This is what Lori Dolan did in her Equipoise Paper (ask a bunch of surgeons what they would do in 12 hypothetical scoliosis situations).

With one exception, there was no consensus of agreement. That established a state of “clinical equipoise” which ethically allows a physician to participate in a random controlled trial (RCT) evaluating bracing (knowing that some of his patients would NOT be braced) even IF he personally believes in the efficacy of bracing.

“Clinical equipoise has been defined as the state of honest, professional disagreement in the community of expert practitioners as to the preferred treatment”

Oh, the one exception? …. bracing post menarchal girls. Most (not all) of the expert respondents whose opinions were elicited in the study felt that bracing post menarchal girls would not affect outcome. (Something else perhaps for Chris to consider.)

Pooka1
07-10-2010, 06:26 AM
This is what Lori Dolan did in her Equipoise Paper (ask a bunch of surgeons what they would do in 12 hypothetical scoliosis situations).

Yes and that was a great nutshell of that paper.

In my comment I was referring more to what the odds of success would have to be for parents to agree to various types of brace treatments.

For me, I would need a very high proven success rate for never needing fusion in the kid's life. Since bracing doesn't appear to have a very high short-term success rate (perhaps ~10%), and since there is no guarantee a kid is ever out of the woods, then the question is a non-starter for me.

But I think there are parents on here who would brace a kid with a much lower chance of success. Documenting the range of opinion on this probably could be a dissertation in some psych department. I would predict the opinions would map at least loosely to the regard for evidence and how they perceive the discomfort level (physical and mental) of braces for kids. For me, evidence is the alpha and omega. For others, it's the possibility of a hope I guess. I am not a psych major so I really have no clue about any of this.

Pooka1
07-10-2010, 06:53 AM
By the way, the bracing question is different for JIS versus AIS. BAS2101 brought in a confounder with one of her putative bracing success stories... a JIS case. Surgeons will not to my knowledge fuse a JIS case so I think you have to do either bracing or VBS or growing rods or VEPTR or something.

But again there is a choice and there are questions of evidence and kid comfort for JIS cases also in going with bracing versus a non-fusion surgical technique. I would probably go with bracing if my JIS kid was not a candidate for the non-fusion surgeries but only because there is no other choice.

flerc
07-10-2010, 07:03 AM
Most (not all) of the expert respondents whose opinions were elicited in the study felt that bracing post menarchal girls would not affect outcome. (Something else perhaps for Chris to consider.)
They were also considering EDF technique combined with exercises?

Pooka1
07-10-2010, 07:06 AM
They were also considering EDF technique combined with exercises?

No they were considering just bracing.

Surgeons will consider EDF and exercise as treatments when there is proof they might work.

flerc
07-10-2010, 07:27 AM
No they were considering just bracing.

Surgeons will consider EDF and exercise as treatments when there is proof they might work.

Maybe the proof exists and they are not noticed.

Pooka1
07-10-2010, 07:33 AM
Maybe the proof exists and they are not noticed.

So you are saying maybe the surgeons can't do the job they are trained to do? If a treatment worked then surgeons would tell their patients to do it.

There is nobody who has more training and knowledge than surgeons in knowing which treatments work and which do not work. They understand the evidence for conservative treatments.

They don't study alternative treatments like EDF as far as I know but a few do study certain exercise.

flerc
07-10-2010, 07:44 AM
So you are saying maybe the surgeons can't do the job they are trained to do? If a treatment worked then surgeons would tell their patients to do it.

There is nobody who has more training and knowledge than surgeons in knowing which treatments work and which do not work. They understand the evidence for conservative treatments.

They don't study alternative treatments like EDF as far as I know but a few do study certain exercise.

I think like you, that nobody knows enough about scoliosis.
I don't believe surgeons are noticed about all non surgical treatments followed in the world, and maybe much of them have worked as it seemed to be happened.

Pooka1
07-10-2010, 07:49 AM
I think like you, that nobody knows enough about scoliosis.
I don't believe surgeons are noticed about all non surgical treatments followed in the world, and maybe much of them have worked as it seemed to be happened.

These people should show this evidence to the surgeons immediately! They should publish in the top medical journals.

If they can help kids then why are they keeping this treatment a secret? They would become very rich if it worked so I don't understand why they don't show their evidence if they have it. It makes no sense to me.

Snoopy
07-10-2010, 08:09 AM
I am NOT trying to start trouble here, but once again a thread has been hijacked! Chris is a new parent looking for help and guidance (not battles about articles). I don't have a problem with your on-going discussion, but could it be moved out of this thread? Maybe to the research section?

Thanks,
Mary Lou

flerc
07-10-2010, 08:11 AM
These people should show this evidence to the surgeons immediately! They should publish in the top medical journals.

If they can help kids then why are they keeping this treatment a secret? They would become very rich if it worked so I don't understand why they don't show their evidence if they have it. It makes no sense to me.

Much cases are not a secret, I saw it in Internet and I posted here, as other members. I don´t know if they are rich ore not. I know they are helping much kids, at least I know parents very happy with the treatment, but surely not all of them.

Pooka1
07-10-2010, 08:18 AM
I am NOT trying to start trouble here, but once again a thread has been hijacked! Chris is a new parent looking for help and guidance (not battles about articles). I don't have a problem with your on-going discussion, but could it be moved out of this thread? Maybe to the research section?

Thanks,
Mary Lou

I understand that point.

But we have a innocent parent and child here new to scoliosis who was being grossly and recklessly mislead. If citing journal articles corrects that situation then it is a good thing. Bad advice should be challenged every time because there are innocent kids involved.

flerc
07-10-2010, 08:45 AM
I understand that point.

But we have a innocent parent and child here new to scoliosis who was being grossly and recklessly mislead. If citing journal articles corrects that situation then it is a good thing. Bad advice should be challenged every time because there are innocent kids involved.
Who knows what advices are goods or bads? Who knows if journal articles are showing all that works?..

I am NOT trying to start trouble here, but once again a thread has been hijacked! Chris is a new parent looking for help and guidance (not battles about articles). I don't have a problem with your on-going discussion, but could it be moved out of this thread? Maybe to the research section?

Thanks,
Mary Lou

but I agree with this point, debates are not what he are needing, so I'll not continues it here.

bbrian35
07-14-2010, 05:36 PM
Chris, Your post and the threads posted in reply show you just what happens on this forum. Don't let yourself get too discouraged by certain posters. If I would have listened to Pooka when I logged on to this site looking for advice and support 7 months ago, I would have failed miserably in helping my daughter. She was not in the upper 40's like yours, only 39 degrees, but a high apex with a tight curve T5-T9. According to posters here and certain studies, her curve was difficult and the type destined for progression. I sit here today after 6 mos. of RSC brace and Schroth therapy and her unbraced curve has most recently been measured at 31 degrees. She is a Risser 2 (1 when we started) and still has time for greater correction. There are those that will tell you "there is no proof" for this or that. Save yourself the trouble of putting up with those who care more about arguing and trying to show how well studied they are and read through the forum. PM those with similar stories or those who have done what you may be considering for treatment. They will respond with their experiences, what's worked for them and what hasn't. We can also offer emotional support instead of the combative, argumentative stuff your post has elicted. I know just how you feel. Feel free to message me and I can give you more specifics of my daughter's case and what we've learned in the process. Don't let the Pookas of this world tell you that things aren't possible and that people only want to take your money. Maybe bracing and PT didn't work for them or they chose a different treatment plan that didn't work and now they have to vent their frustrations by discouraging other people. They will tell you how well studied and scientific they are, refer you to this study or that, and many other things as the basis for considering their opinions. Do yourself a favor, take what you need and leave the rest behind. I can tell you this, I chose the "unproven", "want to take your money for exercises that don't work" route and couldn't be happier. They worked despite all of the wisdom from certain people telling me that they wouldn't. They are working very well! Good Luck to you and yours!

Pooka1
07-14-2010, 08:31 PM
Sounds like a lot of people are getting cheated out of their Nobel. :rolleyes:

If it doesn't make sense it probably isn't true. If people would stick with just that one thing then we wouldn't need the Better Business Bureau to save folks (and shamefully their kids) from themselves.

THINK. It's IBM's motto but it's useful here.

Pooka1
07-14-2010, 08:52 PM
If I would have listened to Pooka when I logged on to this site looking for advice and support 7 months ago, I would have failed miserably in helping my daughter.

JIS versus AIS. Apples and oranges. JIS kids can't be fused... you have to attempt conservative treatments. You are deliberately confusing an innocent parent with an innocent child. You are part the problem, not part of the solution. We are talking about a 48* AIS curve. Your post is not helpful because you are not recognizing these important distinctions. I agree with one thing... take this nonsense to PMs.

Pooka1
07-15-2010, 06:28 AM
Chris, Your post and the threads posted in reply show you just what happens on this forum. Don't let yourself get too discouraged by certain posters. If I would have listened to Pooka when I logged on to this site looking for advice and support 7 months ago, I would have failed miserably in helping my daughter. She was not in the upper 40's like yours, only 39 degrees, but a high apex with a tight curve T5-T9. According to posters here and certain studies, her curve was difficult and the type destined for progression. I sit here today after 6 mos. of RSC brace and Schroth therapy and her unbraced curve has most recently been measured at 31 degrees. She is a Risser 2 (1 when we started) and still has time for greater correction. There are those that will tell you "there is no proof" for this or that. Save yourself the trouble of putting up with those who care more about arguing and trying to show how well studied they are and read through the forum. PM those with similar stories or those who have done what you may be considering for treatment. They will respond with their experiences, what's worked for them and what hasn't. We can also offer emotional support instead of the combative, argumentative stuff your post has elicted. I know just how you feel. Feel free to message me and I can give you more specifics of my daughter's case and what we've learned in the process. Don't let the Pookas of this world tell you that things aren't possible and that people only want to take your money. Maybe bracing and PT didn't work for them or they chose a different treatment plan that didn't work and now they have to vent their frustrations by discouraging other people. They will tell you how well studied and scientific they are, refer you to this study or that, and many other things as the basis for considering their opinions. Do yourself a favor, take what you need and leave the rest behind. I can tell you this, I chose the "unproven", "want to take your money for exercises that don't work" route and couldn't be happier. They worked despite all of the wisdom from certain people telling me that they wouldn't. They are working very well! Good Luck to you and yours!

This post above is an illustration of how facts not only don't change people's minds but can make them more entrenched in nonsense...


Facts don’t necessarily have the power to change our minds. In fact, quite the opposite. In a series of studies in 2005 and 2006, researchers at the University of Michigan found that when misinformed people, particularly political partisans, were exposed to corrected facts in news stories, they rarely changed their minds. In fact, they often became even more strongly set in their beliefs. Facts, they found, were not curing misinformation. Like an underpowered antibiotic, facts could actually make misinformation even stronger*.


“Area Man Passionate Defender Of What He Imagines Constitution To Be,” read a recent Onion headline. Like the best satire, this nasty little gem elicits a laugh, which is then promptly muffled by the queasy feeling of recognition.

http://richarddawkins.net/articles/488642-how-facts-backfire

The context of the article is political but it seems to apply to everything. What makes it worse in the present context is there is an innocent child (with a 48* AIS curve) involved.

jrnyc
07-15-2010, 07:06 AM
hi Chris
some on forum are just trying to save you the time, money and grief of believing in and trusting certain doctors and treatments that are not only unproven, but sometimes actually fraudulent...

Sharon, i thank you for sharing your knowledge...and also for sharing the experience you have had with your daughters' treatments and surgeries! you have repeatedly demonstrated how much about the spine and scoli that you've researched, learned and gone through personally...and i know how good your intentions are...
not everyone will appreciate it...but i certainly do!

jess

Pooka1
07-15-2010, 07:15 AM
Thanks, Jess.

It is so hard to find the middle ground between laying out the facts and exploding the hopes of parents to avoid surgery for their children.

This scoliosis game is so hard. So little is known. But that doesn't mean nothing is known. We have some data on what 48* AIS curves do and pretending otherwise or holding out for long odds or deliberately conflating that with a smaller JIS curve where fusion is not on the table is not helpful to innocent parents and is actually harmful to innocent kids.

Science/medicine is the only game in town whether parents want to acknowledge that or not. Alternative purveyors will always be out there snaring the poor bunnies though.

bbrian35
07-15-2010, 10:50 AM
Wow Sharon, I'm honored-so many posts to waylay your frustration from my little post? Again, you degrade to personal attack mode but it was expected. Where did I suggest any particular treatment? I'm just highlighting what happens to posts in this forum. People come here for support and info, and their post are hijacked and taken off course. As always, Pooka needs the last word in such a way to say " I'm right, you're wrong, I know so much more' blah, blah blah". I remember coming here for the first time feeling hopeful and relieved that such a place existed, only to have the same thing happen to my post as what happened to this one, a degrading exchange of back and forth one-upmanship that served no purpose in addressing the original post. My suggestion to Chris is simple- read, read, read, take what you need from here, exchange messages, seek out other resources and get the help of experienced clinicians and practitioners to help your daughter. Had I listened to what was suggested here, I would have done nothing and supposedly my kid's curve would have been fine with no intervention as "there is no proof bracing works". Anyway Sharon, here's your spot for that last word you seem to covet so dearly. Quote and disparage to your content. Personally, I think you need to find other things to do with you extra time than prowling this part of the forum. Spew your brains out in the research section. If people want that information, they know it's there. More than anything though, I pray that you find the help you need Chris.

bbrian35
07-15-2010, 11:17 AM
[QUOTE=Pooka1;103583]This post above is an illustration of how facts not only don't change people's minds but can make them more entrenched in nonsense...


Fact is-the treatment is working despite the "fact" it doesn't. Preposterous, isn't it?!

jrnyc
07-15-2010, 12:09 PM
i can see exactly who is resorting to personal attacks...and it's not Sharon...
that is one nasty post!

jess

bbrian35
07-15-2010, 12:42 PM
Just saying what is. Sharon quotes and disparages quite often just to "one up". You can see many examples of multiple replies in a row after someone posts anything contrary to her beliefs (which of course as she will confirm are based entirely on solid, scientific data, much of which I'm sure is). If she wants to quote me and disparage me simply for the sake of disparagement, I don't think I'm out of line responding in kind. Sharon has much to offer, but so many of us know that much is offered that is not in the spirit of helping. It is to disparage. I can see her sitting at her computer after reading a reply to something she wrote, thinking how to one up the last post, sending, remembering she forgot something, replying again and again until she gets the best and last final word. Unless you agree with Sharon, you're wrong most every time. It's time to give this thread back to the topic of "newly diagnosed".

AILEA
07-15-2010, 12:57 PM
Hello Chris.

Yes, my dd started with a 38 curve, when she was 13 years old and last year she was at 25º.
She has "only" worn her brace. I attribute the reduction to the fact that the first years, she had a very flexible curve, so she had a great in-brace correction.

She has not been very compliant wearing the brace.... that’s why we tried the Spinecor for a few moths, a flexible brace, but it didn’t work for her.
Perhaps if she had been more compliant her curve will be smaller today?

In a few months, she is going to have her "one year brace free x-rays". I know that her curve can return to the same it was when she was diagnosed; sometimes it happens. Perhaps her curve will increase when she gets older, sometimes happens. But maybe her curve will always be around 25º, because it sometimes happens too. There is a possibility, so that’s the reason I tried bracing.

We all have been were you are now, and we only try to help with our experiences.
Good luck.

Ailea

jrnyc
07-15-2010, 02:07 PM
that is your opinion, bbrian35...and it certainly doesnt speak for me...pr many others, i'd bet...
your kinds of posts are the reason i wont be reading forum much for a while...attacks on people that get personal and abusive make me sick!

some people "just cant handle the truth", as Jack Nicholson said...
presenting facts and research should be welcomed, unless...well, refer to above quote!

jess

Sherie
07-15-2010, 02:33 PM
that is your opinion, bbrian35...and it certainly doesnt speak for me...pr many others, i'd bet...
your kinds of posts are the reason i wont be reading forum much for a while...attacks on people that get personal and abusive make me sick!

some people "just cant handle the truth", as Jack Nicholson said...
presenting facts and research should be welcomed, unless...well, refer to above quote!

jess

No, that's not just bbrian's opinion. It speaks for me and probably many others here. I don't post here much because of the rants that go on and on and on.

Speaking of presenting facts and research, I just posted that TSRH research study and it was immediately discredited by you and others before you even bothered finding out all the facts behind the study, that's the "truth"!

Sherie
07-15-2010, 02:36 PM
Hello Chris.

Yes, my dd started with a 38 curve, when she was 13 years old and last year she was at 25º.
She has "only" worn her brace. I attribute the reduction to the fact that the first years, she had a very flexible curve, so she had a great in-brace correction.

She has not been very compliant wearing the brace.... that’s why we tried the Spinecor for a few moths, a flexible brace, but it didn’t work for her.
Perhaps if she had been more compliant her curve will be smaller today?

In a few months, she is going to have her "one year brace free x-rays". I know that her curve can return to the same it was when she was diagnosed; sometimes it happens. Perhaps her curve will increase when she gets older, sometimes happens. But maybe her curve will always be around 25º, because it sometimes happens too. There is a possibility, so that’s the reason I tried bracing.

We all have been were you are now, and we only try to help with our experiences.
Good luck.

Ailea

Hi Ailea

I'm very happy for your daughter. We were trying the spinecor around the same time, didn't do us any good either. I wonder how Gerbo and some of the others kids are doing now?

bbrian35
07-15-2010, 03:13 PM
No, that's not just bbrian's opinion. It speaks for me and probably many others here. I don't post here much because of the rants that go on and on and on.

Speaking of presenting facts and research, I just posted that TSRH research study and it was immediately discredited by you and others before you even bothered finding out all the facts behind the study, that's the "truth"!

Seems it does also speak for many others. The messages I have received attest to that. I'm not here to start any fights, I just think much more can be accomplished to help and inform others without the obsessive putting down and chastising of others comments and posts. With just a minimal amount of research and input from those in the profession, we are all aware that bracing is not a cure nor is it for correcting Cobb angles. It may not be indicated for all cases either. It is meant to hold a curve or inhibit it's progression to avoid surgery when possible, or delay it until the greatest amount of skeletal maturity can be reached before surgical intervention. Correction is a bonus. If something worked for someone, why not a note of congratulations as opposed to an all out effort to debunk results that have been personally realized. My wish for anyone living this ongoing treating and decision making regarding scoliosis is that it could be simple and clear cut. It's not and we all live it one way or another and look to places like this for information and support. My sincerest best wishes go out to all of you and your kids so they may live the best life possible in lieu of everything scoliosis brings to our lives! God Bless!

jrnyc
07-15-2010, 08:40 PM
i didnt realize a spokesperson had been appointed...i have plenty of my own private messages stating otherwise!

truth is truth...i feel badly for parents who put their faith and hope in those who are unable to be open and honest about what their treatments can and cannot accomplish...i guess if you really want to believe, you can believe anything...but only long term studies can prove any treatment works! asking questions is NOT discrediting...

jess

mariaf
07-15-2010, 09:06 PM
hi Chris
Sharon, i thank you for sharing your knowledge...and also for sharing the experience you have had with your daughters' treatments and surgeries! you have repeatedly demonstrated how much about the spine and scoli that you've researched, learned and gone through personally...and i know how good your intentions are...
not everyone will appreciate it...but i certainly do!

jess

I appreciate it as well, Jess. Regardless of how some folks may interpret Sharon's posts, her heart is ALWAYS in the right place, trying to make sure that folks are going in with eyes wide open, knowing the facts.

There are, unfortunately, a lot of people out there trying to make a buck off of desperate parents - and if you read Pooka's posts, she is always looking out for patient and parents alike - and I respect her for asking those who are touting unproven cures to show us the facts!

Gryffindor
07-15-2010, 09:14 PM
Of the three different scoliosis specialists that we have seen in the past year, not one of them suggested bracing.....even when my daughter's curves were initially only 21T & 36L. The first two doctors suggested a wait and see course of action. It was only after we were able to document how quickly our daughter's curves were progressing (roughly 5 degrees per month) that surgery was scheduled. This is what was causing her pain. Her muscles couldn't keep up with the curves progression.

If our school district had performed scoliosis screenings we might have caught this when there might have been a chance for a brace to at least slow the progression. But, considering that my daughter has had her period for over 2 years now and has a Riser of 4/5 most specialists would tell you that her curves shouldn't be progressing at such a quick pace. Yet, they are.

Considering how aggressive her scoliosis has been I doubt that a brace would have done much to help in our situation.

Chris43
07-15-2010, 10:04 PM
As I said before, I realize that you all are trying to help me. I'll be honest, I don't like reading arguments between two people. I haven't wanted to turn my computer on for a few days because I'm afraid I started some sort of trouble here. I do like hearing the different stories out there about each of your experiences. For example:
AILEA: This story was just that...someone sharing what their daughter went through. She wasn't trying to convince me to do one thing over another. She was just sharing her story. Thank you for doing that. I loved seeing that your daughter is 18 and doing well. You said it perfectly when you wrote that maybe her curve will stay the same, but maybe it won't. None of us can predict the future for these kids. I realize that. I like to know the facts behind decisions that were made. They made their decision and they seem happy with it. She's not telling me what to do though. I guess I just need to hear experiences right now. I want to hear surgical and non-surgical experiences so I can understand how parents come to make their decisions. Ultimately, I will have to make a decision that I feel will be best for my child's situation. I know I will upset some people by choosing an alternative method and I know I will upset some parents by choosing the surgery. I still don't feel any closer to making any kind of decision for now. I just want to know your stories if that's ok. I don't know if I'm making any sense or if you understand what I mean by that. I just don't want people arguing over what I should do. I'm not jumping into anything too quickly especially after all this controversy! I really have alot to think about! Thanks again everybody! Thank you AILEA for sharing your story with me. You seem to have made peace with your decision and I liked seeing that! Good luck to you and your daughter!
Chris

flerc
07-15-2010, 10:53 PM
i didnt realize a spokesperson had been appointed...i have plenty of my own private messages stating otherwise!

truth is truth...i feel badly for parents who put their faith and hope in those who are unable to be open and honest about what their treatments can and cannot accomplish...i guess if you really want to believe, you can believe anything...but only long term studies can prove any treatment works! asking questions is NOT discrediting...

jess

and if long term studies does not exists for what we think that can works, what should to do jess? We should to believe in your great knowledge? Well, I hear you. Tell me what could works or not for you, but stop to repeat your beliefs and give me scientific and rational explanations.

flerc
07-15-2010, 11:06 PM
is incredible that people managing this forum allow this kind of discussion in all non surgical threads whose focus is ever lost in this way.
This eternal discussion should to be encapsulated in an unique thread. Why they don't do that? It's really STRANGE!

bbrian35
07-15-2010, 11:33 PM
When your kid is being treated for scoliosis with bracing and PT, then 6 months later the out of brace images show an 8 degree correction, can't that be shared without all the hub-bub. I don't have numerous blind studies to say bracing works, only our personal experience and images measured 10 times over by several different professionals involved in my kid's treatment to say, this is what we did and this is where we are. No faith or hope needed. The facts are what they are in our case so far. I'm not advocating one treatment over another. If someone is curious as to where we started and what we did to make decisions in our case, I would love to share anything I can. If seeing is believing, in my case, I'm a believer up until now. I can't say what is right or wrong, only we did this because....and this is what happened along the way with doctors, orthotists, insurance companies, etc.. I am not going to tell someone that statistically speaking, what you are doing won't work. We all have/had tough decisions to make along the way. Don't worry about raising someone's ire Chris. Ask anything you want from anyone here willing to offer their experience and support. As much as I may harp about Sharon beating a dead dog, she is well read and has valuable information to offer. We can agree to not agree. It's not easy starting on this whole journey, just keep collecting as much information as you can. Good luck

Pooka1
07-16-2010, 05:41 AM
Of the three different scoliosis specialists that we have seen in the past year, not one of them suggested bracing.....even when my daughter's curves were initially only 21T & 36L. The first two doctors suggested a wait and see course of action. It was only after we were able to document how quickly our daughter's curves were progressing (roughly 5 degrees per month) that surgery was scheduled. This is what was causing her pain. Her muscles couldn't keep up with the curves progression.


This is very similar to my one daughter whose curve moved 5* for the entire observation period up to surgery. She had muscle pain towards the end presumably because of the fast pace but maybe also due to extreme rotation. Two surgeons decided not to try bracing with her. I think they have some experience with fast curves and I'm guessing it is that bracing fails in these cases so they spare the kids. This is to their great credit given bracing is the standard of care for curves in that range (despite having no good evidence they work).

The other kid had a start and stop progression pattern but never broke about 3*-4* per month when it was moving as I recall.

Pooka1
07-16-2010, 05:50 AM
is incredible that people managing this forum allow this kind of discussion in all non surgical threads whose focus is ever lost in this way.
This eternal discussion should to be encapsulated in an unique thread. Why they don't do that? It's really STRANGE!

If science doesn't have the answer then nothing does. Science is the only game in town.

Some people don't like that and won't accept it. There are reasons for that.

Pooka1
07-16-2010, 07:00 AM
I appreciate it as well, Jess. Regardless of how some folks may interpret Sharon's posts, her heart is ALWAYS in the right place, trying to make sure that folks are going in with eyes wide open, knowing the facts.

There are, unfortunately, a lot of people out there trying to make a buck off of desperate parents - and if you read Pooka's posts, she is always looking out for patient and parents alike - and I respect her for asking those who are touting unproven cures to show us the facts!

Thanks Maria. I would say the same about you. :)

I know it's hard to maintain appropriate skepticism in the face of the potential you or your child needs surgery. Spinal surgery is an inherently scary proposition for good reason although the actual as opposed to perceived risk at present, if known to these folks, might obviate some fear.

Because of this, I think Scoliosis will always be a lucrative area for the charlatans unfortunately. Most people are not trained in the importance of asking for evidence nor do they necessarily have the skills to evaluate it. This, combined with situations like surgeons largely not offering a perceived good option like Spinecor drives even more innocent unwitting people away from legitimate medical help and into the pocketbooks of chiros who of course have no relevant training whatsoever in scoliosis. When you have a situation where honest chiros admit chiros shouldn't be treating scoliosis, then the game should be over. Unfortunately, hope springs eternal. If skepticism sprang eternal we wouldn't be discussing any of this.

Susie*Bee
07-16-2010, 07:47 AM
No where in the guidelines to this forum does it say only scientifically proven information can be posted. I understand about charlatans taking advantage, but this is not a "just the facts, m'am" forum. There can be discussion and sharing of people's personal experiences. There are ways to "discuss" differences without attacking the people with whom you don't agree. This is what it says about posting things in the forum, listed in the FAQs area:

The bulletin board as a whole contains various categories (broad subject areas), which themselves contain forums (more specific subject areas) which contain threads (conversations on a topic) which are made up of individual posts (where a user writes something).

Note that I highlighted the word "conversations." It does not say "where scientifically documented information is presented."

Sherie
07-16-2010, 07:59 AM
As I said before, I realize that you all are trying to help me. I'll be honest, I don't like reading arguments between two people. I haven't wanted to turn my computer on for a few days because I'm afraid I started some sort of trouble here. I do like hearing the different stories out there about each of your experiences. For example:
AILEA: This story was just that...someone sharing what their daughter went through. She wasn't trying to convince me to do one thing over another. She was just sharing her story. Thank you for doing that. I loved seeing that your daughter is 18 and doing well. You said it perfectly when you wrote that maybe her curve will stay the same, but maybe it won't. None of us can predict the future for these kids. I realize that. I like to know the facts behind decisions that were made. They made their decision and they seem happy with it. She's not telling me what to do though. I guess I just need to hear experiences right now. I want to hear surgical and non-surgical experiences so I can understand how parents come to make their decisions. Ultimately, I will have to make a decision that I feel will be best for my child's situation. I know I will upset some people by choosing an alternative method and I know I will upset some parents by choosing the surgery. I still don't feel any closer to making any kind of decision for now. I just want to know your stories if that's ok. I don't know if I'm making any sense or if you understand what I mean by that. I just don't want people arguing over what I should do. I'm not jumping into anything too quickly especially after all this controversy! I really have alot to think about! Thanks again everybody! Thank you AILEA for sharing your story with me. You seem to have made peace with your decision and I liked seeing that! Good luck to you and your daughter!
Chris

Hi Chris

Sorry you have to be greeted on the forum in this manner but it's not anything that you said. This is a problem that involves a single person and has been like this for several years. This forum USED to be very friendly and supportive where you could actually come and discuss your treatments (good or bad). We were free to exchange information so that others would benefit from our personal experience. It's not so now. Everything has to be run to the ground a hundred times over.

You can find a lot of good information through the search engine on here and of course, you can send PM to anyone who has something of value to share with you.

Good luck!

flerc
07-16-2010, 07:59 AM
If science doesn't have the answer then nothing does. Science is the only game in town.

Some people don't like that and won't accept it. There are reasons for that.

As a President of my country said time ago 'Reality is the only truth'. Regardless we can understand or demostrate it.
Some people don't like that and won't accept it. There would be reasons for that.
But those reasons don't allow them to play the game they are playing here. It's really SHAMEFUL!!

Sherie
07-16-2010, 08:14 AM
No where in the guidelines to this forum does it say only scientifically proven information can be posted. I understand about charlatans taking advantage, but this is not a "just the facts, m'am" forum. There can be discussion and sharing of people's personal experiences. There are ways to "discuss" differences without attacking the people with whom you don't agree. This is what it says about posting things in the forum, listed in the FAQs area:

The bulletin board as a whole contains various categories (broad subject areas), which themselves contain forums (more specific subject areas) which contain threads (conversations on a topic) which are made up of individual posts (where a user writes something).

Note that I highlighted the word "conversations." It does not say "where scientifically documented information is presented."

Hi Susie

I guess us "lay people" (as I've seen Sharon refer to us) are not intelligent enough to make decisions for ourselves or our loved ones. We should have a separate thread called "ASK THE SCIENTIST" where we can direct all our important life questions.

Seriously, you are absolutely right and I hope things can change so we can freely share information again. I've had PM's where people are actually AFRAID to post because of the backlash that will ensue.

flerc
07-16-2010, 08:45 AM
Hi Susie

I guess us "lay people" (as I've seen Sharon refer to us) are not intelligent enough to make decisions for ourselves or our loved ones. We should have a separate thread called "ASK THE SCIENTIST" where we can direct all our important life questions.

Seriously, you are absolutely right and I hope things can change so we can freely share information again. I've had PM's where people are actually AFRAID to post because of the backlash that will ensue.

I also recived this sort of PM's. Obviously the purpose of some people here is to make impossible to share 'alternative' information without being inmerse in an agressive and steril debate (must hearing the some arguments, dozens, hundreds, thousands of times), wasting a lot of time that this people seems to have without limits. Why are not those arguments encapsulated in an unique thread and only references to this thread are allowed?
It's really strange that managers of this forum don't see that as a problem. They could solve it in simple way.

Pooka1
07-16-2010, 10:29 AM
I've had PM's where people are actually AFRAID to post because of the backlash that will ensue.

If evolution deniers become afraid to post to science groups, is that a good thing or a bad thing?

If astrologers become afraid to post to astronomy groups, is that a good thing or a bad thing?

If homeopathy enthusiasts become afraid to post to medical groups, is that a good thing or a bad thing?

If Holocaust deniers become afraid to post to history groups, is that a good thing or a bad thing?

The answers to those questions are the same for this group and alternative treatments attested to by people who aren't trained to attest to them.

And by the way, I have no relevant training so I'm in the "lay" group also. Everyone here is except McIntire on the topics he has clearly specified. But that said, there are some general science principles which are in play and which you seem to dismiss, perhaps because you aren't aware of them. This is a question of specific knowledge and NOT intelligence... an important difference that you misunderstood in one of your posts. An example is the need for controls. If you'll re-read Linda's comment, the experts in the field of scoliosis agree with that. They agree this is an Achilles heel in the previous research. You and others simply don't like what the experts say. Fine. Nobody cares.

So how did I, with no relevant training in scoliosis, come to the same conclusion as the bulk of these experts? Magic? No... basic science principles. You and others might do well to ask yourself not what you know but what you might be missing instead on banging on attacking people who do agree with the experts.

If you can't attack the idea, attack the person. That's how it goes around here with some folks. But they wouldn't be doing that if an expert said the IDENTICAL things I say.

Sherie
07-16-2010, 10:52 AM
Sharon

Can you just STOP! You don't know when to quit lady. Instead of making your point, your prefer to run everything into the ground until everyone else just gives up and you get the final word in.

I've seen you personally attack people on this site for their religious views, do you remember that teenager that you put under the gun? Please don't deny this, the only reason you've quit is because Linda forbade religious discussions here.

So now you're saying that you're not this all-knowing scientist? You've made this claim many times. You are extremely arrogant and self serving. I'm not really sure you have anyone's best interests at heart, it appears to me that you just want to be right every time.

We're not stupid and we're not putting our heads in the sand. We know there are limitations to bracing just as there are limitations to surgery (and the consequences are much greater and permanent vs. bracing). You need to let people have the freedom to express and exchange ideas and information on this forum without hijacking every single thread.

Has it occurred to you that you're being counterproductive to your own mission? Do you really think that anyone wants to wade through pages of exchange when you're repeating the same thing over and over. Be real.

You would serve your purpose better to succinctly state your position ONCE and let it be.

Pooka1
07-16-2010, 10:58 AM
So now you're saying that you're not this all-knowing scientist? You've made this claim many times.

This is a lie. I challenge you to find a post where I claim this even once much less "many times." No scientist is all-knowing. In fact most have learned that the more you know the less you know. So basically you are projecting your ignorance of this topic onto me and I dont appreciate it. Please cut it out.

Ask yourself about the quality of your arguments when you need to start lying to make your point.

Pooka1
07-16-2010, 11:03 AM
I've seen you personally attack people on this site for their religious views, do you remember that teenager that you put under the gun? Please don't deny this, the only reason you've quit is because Linda forbade religious discussions here.

And just why would I ever want to deny that? Do you see the bias you bring?

She was threatening innocent kids with fire and brimestone burn in hell forever nonsense (please excuse that redundancy).

This a group about a serious medical issue. Folks who disagree can join that prayer healing group. I wish them luck.

flerc
07-16-2010, 11:51 AM
Sherie, don't be part of the game. I had open this thread http://www.scoliosis.org/forum/showthread.php?p=103753#post103753 .
If honest people want to debate, to advice or to alert to other people, but respecting others points of view, they would only do this in this thread, allowing other people to share information about what they think could help, even some people think is ridiculous or insane.
If they continues with the same arguments in others thread like this, is becouse they have other intentions and you can not prevent that.
Only Managers of this forum could.

Pooka1
07-16-2010, 12:19 PM
Back in the day, you would have insisted the world was flat, because science has shown this to be.

FALSE.

Nobody could have possibly showed the world was flat scientifically.

Think about why that would be.

Faith is not a way of knowing.

Susie*Bee
07-16-2010, 12:20 PM
And just why would I ever want to deny that? Do you see the bias you bring?

She was threatening innocent kids with fire and brimestone burn in hell forever nonsense (please excuse that redundancy).

This a group about a serious medical issue. Folks who disagree can join that prayer healing group. I wish them luck.

Oh for Pete's sake Sharon. That was in the kids' section. She (Sparklegirl59) was a 13 year old girl with a strong faith and most of her posts were like the ones in this thread: http://www.scoliosis.org/forum/showthread.php?p=60549&highlight=sparklegirl#post60549

You took great offense at them and blew it out of proportion and then thought she was some kind of adult stalking the children on the forum...

You get sooo super sensitive when anything religious is said, that you go into some sort of paranoia. All those posts from that one thread are gone because Linda removed them. For people of the faith, there is just no way to separate faith from our being-- it is an integral part of us, just like our breathing.

I'll never forget this quote from you, when you and I were going back and forth in the "prayer and medicine in research" thread (p. 6 if anyone is interested), in the research section-- and yes, I had permission from JOE to start that thread, so please don't delete it, Linda, even though it deals with religion... and if it's true, (your quote) then I'm glad I have a dysfunctional brain:

"We know that certain brain pathologies like temporal lobe seizures are often accompanied by hyper-religious feelings. You cure the seizures and the hyper-religious feelings go away. Normal religious people might have these same pathways but they aren't abnormally active like in the seizure patients. Atheists are missing these pathways."

That's all I'm saying about this-- I don't want to dredge up anymore of the past, but for you to say she was preaching hellfire and brimstone or whatever seemed too much. She really "blessed" a lot of people on here too, you know.

Adding on: I always felt badly that her mother pulled her off because of the conflict/alleged bullying from adults...

bbrian35
07-16-2010, 12:26 PM
And there she goes again. Can't anyone see, in Sharon's eyes, only Sharon is right. We must all be uneducated, blithering idiots who have gained nothing through our experiences. And shame on us for having an opposing viewpoint. Maybe there should be an "All Sharon, all of the time" section where we can post and she can use all of that scientific knowledge to show us that what we see happening in our cases can't be happening without a documented study of some sort.

Pooka1
07-16-2010, 12:28 PM
Yes that brain research is very interesting although what you re-posted has some speculation/prediction on my part (not the temporal lobe seizure stuff... that has been shown). More is being done using fMRI (functional magnetic resonance imaging. Hopefully we will explain religious belief on a neurochemical basis eventually.

It is likely the case that credulity was a positive trait in evolution of humans. That's why I say atheists, people like me who simply can't believe, are probably missing some key brain pathway for belief. But in the modern world, it is no liability but rather is an advantage in some ways though a disadvantage in others, to be missing that pathway.

Religious folks are slightly happier and live a bit longer on average than atheists. That, however, cannot be separated from the placebo effect of wishful thinking.

It's all brain science. The rest is commentary.

Susie*Bee
07-16-2010, 12:31 PM
I think you might like fixscoliosis.com. This group does not deal with science or evidence or results (the latter according to one of the chiros on there).

Sharon-- I consider that mean-spirited and uncalled for.

Pooka1
07-16-2010, 12:31 PM
And there she goes again. Can't anyone see, in Sharon's eyes, only Sharon is right. We must all be uneducated, blithering idiots who have gained nothing through our experiences. And shame on us for having an opposing viewpoint. Maybe there should be an "All Sharon, all of the time" section where we can post and she can use all of that scientific knowledge to show us that what we see happening in our cases can't be happening without a documented study of some sort.

Here, read this... it will help you understand why you think you are being attacked when only your ideas are being criticized...

http://whyevolutionistrue.wordpress.com/2010/07/16/relentless-attacks-on-clergy/

Pooka1
07-16-2010, 12:32 PM
Sharon-- I consider that mean-spirited and uncalled for.

Okay I'll delete it then.

bbrian35
07-16-2010, 12:40 PM
I don't feel as though I'm being attacked. I just wonder what drives you when are quite obviously not here to do anything but advance your own cause and berate others who don't see the world as you do. Your obsessive posting on so many threads pretty much speaks for itself. I don't know whether to laugh at or feel sorry for you.

Pooka1
07-16-2010, 12:40 PM
I don't feel as though I'm being attacked.

I disagree.

bbrian35
07-16-2010, 12:43 PM
I disagree.

That's okay. You may disagree. It's nice that you kept it short and to the point. Very Nice!

mariaf
07-16-2010, 01:34 PM
As we are all aware, Sharon uses the term science to justify her tirades that have nothing to do with science and everything to do with putting someone down so she can feel better about herself for whatever reason.......She can't resist her OCD and her need to belittle someone to feel better about herself. She cares so much less about the people who come here for information than she does about herself.....Keep all of your stupid science quotes for someplace else.

bbrian35,

I really, really don't want to jump into the fray, but weren't we just saying that we didn't care for personal attacks??? And aren't you doing just that?? Please stop.

flerc
07-16-2010, 01:34 PM
I think you might like fixscoliosis.com. This group does not deal with science or evidence or results (the latter according to one of the chiros on there).


It would do more easy the job of those people I was refering.
Sharon, I want to believe you are not part of those people. Chris is not stupid. He understand your point of view, so stop your debate in this thread and continues it only where I said.
This should to be the only thread to advice people about what they should to think. You could explain me why you think I denied science, you could tell me what do you understand about Problem Solving. Surely I'll have some time for those sort of debates if I see that this forum could be what I believed about it some time ago.

bbrian35
07-16-2010, 03:51 PM
bbrian35,

I really, really don't want to jump into the fray, but weren't we just saying that we didn't care for personal attacks??? And aren't you doing just that?? Please stop.

Yes, I did and you are correct. It is time to stop. I will delete posts that do not belong. I think the point that everyone has been trying to make has been made. Hopefully we have all learned something as to what belongs where on the forum. My sincerest apologies to Chris especially.

mariaf
07-16-2010, 03:55 PM
Thank you, bbrian35. Hopefully, others will follow your lead - and we can get back to business without all the distractions.

flerc
07-16-2010, 07:22 PM
She has "only" worn her brace. I attribute the reduction to the fact that the first years, she had a very flexible curve, so she had a great in-brace correction.


Chris, it sounds really logic. I know there are some methods to turn more flexible the spine but I'm not sure if they are in USA, but sure PNF exists there http://journals.indexcopernicus.com/abstracted.php?icid=502090

Combining different solutions would to be the best.

Regards

flerc
07-16-2010, 08:02 PM
Chris, in fact there are more techniques in your country as Miofascial release, Rolfing, ART, Pold Method..

good luck!

flerc
07-18-2010, 09:20 AM
I know there are some methods to turn more flexible the spine


Chris, Some surgeons at least in my country recommends to swimming, I don`t know if it could be good to turn more flexible the spine, but may be because the absence of gravity force. I think Schroth is other method good for that, not only for strengthen muscles.
Feel free to ask anything, and if you follows solutions against the beliefs that are trying to be imposed for some people here, don´t be afraid to share all with us.