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scolio1964
01-22-2011, 12:07 PM
My daughter just had her checkup 2 days ago and her curve progressed from 27 degrees to 36 degrees in 5 months. I know that 36 degrees isn't horrible, but if she progressed 9 degrees in 5 months, she could very well progress another 9 degrees in the next 5 months. I don't know why it progressed so much She's 14 years old - still growing. She wears the Boston brace and wears it as she is supposed to. She is so compliant at wearing it - better than I would have ever expected her to be. I'm so confused now. She only grew 1/2 inch in that 5 months. She is a ballet dancer and takes a Pilates class once a week. She's allowed to have her brace off 4 hrs a day. There are some days, because of her ballet schedule, that she might have her brace off 4 1/2 or 5 hours a day, but she's always made it up on the days that she doesn't do ballet. We have kept track on a calendar and she actually was wearing her brace more than she was supposed to. Her scoliosis is inherited. I had surgery when I was 15 and her brother also has it, but it's mild. But, I wonder if the ballet and pilates is making it worse? Ballet is her passion. I have so many questions. What would make her back get worse? Is it the ballet, the pilates or is it just because it's inherited from me and it would get worse anyway? She's worn the brace for 3 years and up until 5 months ago, her curve only increased 2 degrees. So, in 5 months it increased 9 degrees. Is that unheard of? Do I let her continue doing ballet and just take the chance that her curve will progress to the point where she will need surgery? I hate this. I hate not knowing what caused the progression and not knowing how to help her. Will having surgery be an end to ballet for her? She would be devastated. I'm so frustrated. Has anyone experienced anything similar?

Pooka1
01-22-2011, 12:25 PM
Hi and welcome. I am sorry your daughter progressed. I'll try to answer your questions and hope others chime in.

The bottom line on many of your questions is that surgeons cannot answer them with anything close to evidence. And if surgeons can't answer them then NOBODY can. They are the only game in town. Sorry to say but that is the state of affairs.


My daughter just had her checkup 2 days ago and her curve progressed from 27 degrees to 36 degrees in 5 months. I know that 36 degrees isn't horrible, but if she progressed 9 degrees in 5 months, she could very well progress another 9 degrees in the next 5 months. I don't know why it progressed so much She's 14 years old - still growing.

Increased progression rate in AIS is linked to the growth spurts.


She wears the Boston brace and wears it as she is supposed to. She is so compliant at wearing it - better than I would have ever expected her to be. I'm so confused now. She only grew 1/2 inch in that 5 months. She is a ballet dancer and takes a Pilates class once a week. She's allowed to have her brace off 4 hrs a day. There are some days, because of her ballet schedule, that she might have her brace off 4 1/2 or 5 hours a day, but she's always made it up on the days that she doesn't do ballet. We have kept track on a calendar and she actually was wearing her brace more than she was supposed to.

This would not be the first case of progression in the face on complete compliance. It is known that some cases are refractory towards bracing. For example, bracing is thought to be futile for scoliosis associate with Marfans syndrome. Also, it may be that the 1% of girls who have a Scoliscore of >180 are refractory towards bracing. Who knows.

Also, my one kid was stable for a 6 month period (low 30*s) and then got a brace and progressed 8* in the following six month period when she was completely compliant with wearing her night-time brace. I do not attribute her increase to her brace wear. You just can't win some times.


Her scoliosis is inherited. I had surgery when I was 15 and her brother also has it, but it's mild. But, I wonder if the ballet and pilates is making it worse? Ballet is her passion. I have so many questions. What would make her back get worse? Is it the ballet, the pilates or is it just because it's inherited from me and it would get worse anyway?

I suggest there is no evidence whatsoever that ballet, PT etc. have made her back get worse. My kids did no meaningful exercise and their backs got worse. My one kid had a curve that moved 5* a month for the entire observation period until fusion. It never moved slower than that based on sequential radiographs.


She's worn the brace for 3 years and up until 5 months ago, her curve only increased 2 degrees. So, in 5 months it increased 9 degrees. Is that unheard of?

No. That is <2 degrees a month. My one daughter's curve moved 5* a month as I mentioned and the other daughter's curve moved between 0* and ~4* a month. Also the stability before 5 months ago may have been due to her not being in a growth spurt as opposed to the brace wear but nobody can know that.


Do I let her continue doing ballet and just take the chance that her curve will progress to the point where she will need surgery?

There is not a lick of evidence that ballet is related to the progression. In fact some folks think PT lessens progression though there is a vanishing amount of high quality evidence for that.


I hate this. I hate not knowing what caused the progression and not knowing how to help her. Will having surgery be an end to ballet for her? She would be devastated. I'm so frustrated. Has anyone experienced anything similar?

Her genetic make-up is what is causing the progression as it is for all kids with AIS as opposed to Chiari, neuromuscular or congenital issues and such.

You have a right to be frustrated. It is frustrating.

As to fusion ending ballet, it might matter where the curve is. If it is in the thorax then maybe not... I don't know. I just know that my kids are fused through the thorax and have a near-normal range of motion. They look and feel normal but they don't do ballet.

Good luck.

scolio1964
01-22-2011, 08:42 PM
Thank you for your comments. I really had a lot of faith that the brace would prevent her from having surgery, but I'm having doubts now. Her curve is in the thorax region and her doctor said that it's in a great spot for surgery - I'm not exactly sure what he meant by that!! My son's curve is in the lumbar region and the doctor said he'd rather have her bad curve where it is than have his small curve.

Pooka1
01-22-2011, 08:58 PM
Thank you for your comments. I really had a lot of faith that the brace would prevent her from having surgery, but I'm having doubts now. Her curve is in the thorax region and her doctor said that it's in a great spot for surgery - I'm not exactly sure what he meant by that!! My son's curve is in the lumbar region and the doctor said he'd rather have her bad curve where it is than have his small curve.

You're welcome.

I think many parents get the wrong idea about bracing. I know I did. While there are some surgeons who think it can work, they will not claim there is good evidence it works.

I can try to explain the comment about curve location. It is a small mercy that most AIS curves are thoracic because that area does not move all that much anyway. As I mentioned, my kids have ten levels fused and they look and feel normal and are not expected to need any more back surgery in their life. I hope the newer surgical techniques improve the long term on the lumbar cases.

hdugger
01-22-2011, 10:19 PM
I *think* Pooka is saying that it's very hard to prove with research whether bracing (or, really, any treatment other than surgery) works because of the difficulty of researching scoliosis and not due to anything specifically about bracing. That's true of lots of things in medicine - it's just a very hard field to do research in.

But that doesn't have anything to do with your with daughter's treatment, which is based on your doctors' assessment of your daughter's likelihood to benefit from bracing based on years and years of training and experience. I just didn't want you to think that we somehow knew something that your doctor didn't know - we're just parents without any medical training. If you doctor feels that bracing is a good treatment for your daughter, that's the only advice you need to take.

There are lots of parents on the forum who have daughters in ballet - hopefully one of them will come by and offer advice. (I have a 22 year old son, and he doesn't even *watch* ballet :))

The only thing I've read linking ballet to scoliosis talked about the strict exercise and diet regime somehow delaying the first period. I don't know enough to interpret that information, but it might be worth talking to your doctor about. I've never heard anything linking pilates to scoliosis.

One other thing I've sometimes seen (and seen with my son) is that kids can measure up or down on a single xray even though their curve isn't changing. There's just alot of wiggle room in the xray measurement. Mostly doctors rely on a pattern of progression and not just a single xray showing a bigger curve. So, don't worry too much about a single xray. Her underlying curve might not have changed, or it might have changed just a few degrees.

Ballet Mom
01-22-2011, 10:37 PM
Hi Scolio1964,

Sorry to hear that your daughter is progressing. Bracing can be very effective, however, for some people it just doesn't work for whatever reason. Sometimes because the curve is too rigid to get a good correction in the brace, etc. That is probably not the case with your daughter in ballet. Sometimes kids won't tolerate the bracing. Some researchers believe some genetically driven curves may not be responsive to any bracing.

Perhaps your daughter is now in her adolescent growth spurt. That is typically the year prior to her first period. This can be delayed in ballet dancers in serious training. While some braces can hold a curve prior to the large forces of the adolescent growth spurt, some may not be able to overcome the curve growth associated with this great increase in growth. Also, even though your daughter "only grew" a half inch in five months, there would also be horizontal growth associated with the growth in the spinal curve. So she actually is growing a lot.

My first question is whether or not this brace she is wearing is still her first brace. Three years is an awfully long time to be in the same brace. Hopefully she has been refitted for a new brace while she has been growing all this time. If a brace doesn't fit anymore, the pressure points may not even be hitting the spine properly to even exert a force contra to the curves.

I would also suggest checking the straps to make sure they are holding properly. I used to check every night to make sure my daughter had put her brace on properly and the straps looked nice and functional...but it turned out that in the morning the velcro had let loose and hadn't been holding tightly during the night. The velcro was just not holding any force in the straps. This was after about six months of wear. We had to get the straps replaced. I had to get straps fixed on her second brace when the hardware gave way. I had no idea there was any maintenance associated with these braces!

I doubt your daughter would have to give up ballet as something she enjoys doing if she ended up fused, but unfortunately it is unlikely she would become a professional ballerina. They need all the natural flexibility in their spine plus some! Talk to her doctor because each fused person is different in whether they can continue with dance or not. I'm sure it depends a lot on how long the fusion is.

I personally believe ballet has helped my daughter in her bracing, although I do think that girls with hyperextended joints who start ballet intensely should be given a warning that they should be watching for the first initial signs of scoliosis as it is very prevalent in them.

Good luck to your daughter!

Pooka1
01-22-2011, 10:45 PM
I question the suggestion that there is ANY evidence whatsoever that ballet exacerbates scoliosis in any kids including those with hyperflexible joints.

Nobody has laid a glove on ballet (or anything activity or lack of activity for that matter) in terms of exacerbating AIS.

There is no evidence to suggest you should be second guessing your daughter's participation in ballet. If anything, PT is thought to lessen the chance of progression though that is FAR from proven.

Ballet Mom
01-22-2011, 10:48 PM
Well, explain why so many ballerinas and rhythmic gymnasts with hyperextended joints have scoliosis? Do they have scoliosis at that rate with hyperextended joints when they don't participate in ballet or rhythmic gymnastics? I think it simply shows that there is a big environmental influence if you have the right genetic makeup. And of course, you don't want to hear that.

Pooka1
01-22-2011, 10:52 PM
The people who stay in ballet and rhythmic gymnastics are the ones who are successful in it and the ones who are successfully in it are the ones who are good at it for whatever reason INCLUDING having the characteristics that are the SAME as those with collagenic issues that go along with some scoliosis.

You are confusing coincidence with causation.

Ballet Mom
01-22-2011, 10:59 PM
The people who stay in ballet and rhythmic gymnastics are the ones who are successful in it and the ones who are successfully in it are the ones who are good at it for whatever reason INCLUDING having the characteristics that are the SAME as those with collagenic issues that go along with some scoliosis.

You are confusing coincidence with causation.

That's incorrect because scoliosis occurs long before anyone is being cut or self-selecting out from these activities due to not having hyperextended joints. In the US, that would be in 16-18 year olds in ballet....and Americans have lots of ballerinas that are not hyperextended. Scoliosis shows up in these girls a lot earlier than 16 typically.

Pooka1
01-22-2011, 11:05 PM
Hypermobility occurs ahead of scoliosis in AIS. That is what keeps these kids who start early in ballet or rhythmic gymnastics or whatever because they are suited to it.

Years and years of being suited to it result in these kids getting better than their peers on that score at least if that is what is valued in ballet. I can only assume it is based on the claimed number of folks who have scoliosis who are in ballet. Of course I would want to see that corroborated in some manner.

Who can say that the rate that ballerinas have some collagenic issue is higher than the general population? Is there some reference? This might all be folk science.

scolio1964
01-22-2011, 11:07 PM
The only thing I've read linking ballet to scoliosis talked about the strict exercise and diet regime somehow delaying the first period. I don't know enough to interpret that information, but it might be worth talking to your doctor about. I've never heard anything linking pilates to scoliosis.

One other thing I've sometimes seen (and seen with my son) is that kids can measure up or down on a single xray even though their curve isn't changing. There's just alot of wiggle room in the xray measurement. Mostly doctors rely on a pattern of progression and not just a single xray showing a bigger curve. So, don't worry too much about a single xray. Her underlying curve might not have changed, or it might have changed just a few degrees.[/QUOTE]

Her doctor has said that she will still grow 1 1/2 years after she starts her period. She still hasn't. But, I argue that couldn't she finish growing sooner than that? I really believe that she hasn't started because of the ballet - I've heard that happens with a lot of dancers and gymnasts. She's 14 and I think I grew until I was about 16. If that holds true for her she will be wearing a brace for 5 years. Wow!!

Her doctor also said that no two doctors would measure the same x-ray the same. I can tell that her x-ray is definitely worse than the last x-ray, but I wonder about the measurement.

Thanks for your help!

Pooka1
01-22-2011, 11:13 PM
Her doctor has said that she will still grow 1 1/2 years after she starts her period.

As I recall our surgeon said 2 years. If so that is in rough agreement.


She still hasn't. But, I argue that couldn't she finish growing sooner than that? I really believe that she hasn't started because of the ballet - I've heard that happens with a lot of dancers and gymnasts. She's 14 and I think I grew until I was about 16. If that holds true for her she will be wearing a brace for 5 years. Wow!!

Hey you may be right about that. I have no idea. Have you asked your surgeon that question?


Her doctor also said that no two doctors would measure the same x-ray the same. I can tell that her x-ray is definitely worse than the last x-ray, but I wonder about the measurement.

That's correct and there are any number of testimonials on this forum in evidence of that fact.

Your daughter may never progress any more. That is certainly possible. Our surgeon says that chronological age is the best determinant of remaining growth though he said that before Scoliscore.

Ballet Mom
01-22-2011, 11:13 PM
Hypermobility occurs ahead of scoliosis in AIS. That is what keeps these kids who start early in ballet or rhythmic gymnastics or whatever because they are suited to it.

Years and years of being suited to it result in these kids getting better than their peers on that score at least if that is what is valued in ballet. I can only assume it is based on the claimed number of folks who have scoliosis who are in ballet. Of course I would want to see that corroborated in some manner.

Who can say that the rate that ballerinas have some collagenic issue is higher than the general population? Is there some reference? This might all be folk science.

You would think that our researchers would have determined the prevalence of scoliosis in ballet dancers with hyperextended joints versus the prevalence of scoliosis in the general populace with hyperextended joints, wouldn't you? It would be very interesting.

The same ballet dancers are in my daughters studios that were in the studios when they were four years old. They still meet and greet at ballet functions twelve years later. They do it because they developed a passion for it, and if they didn't have natural flexibility they worked on stretching all the time until they did become flexible. That doesn't mean they developed hyperextended joints, which IS genetic.

Pooka1
01-22-2011, 11:16 PM
You would think that our researchers would have determined the prevalence of scoliosis in ballet dancers with hyperextended joints versus the prevalence of scoliosis in the general populace with hyperextended joints, wouldn't you? It would be very interesting.

I agree it would be interesting but I would be shocked if anyone did a study on it.

Ballet Mom
01-22-2011, 11:18 PM
I agree it would be interesting but I would be shocked if anyone did a study on it.

Why not, it could show that scoliosis is not just genetic. But I guess nobody's very interested in that result.

scolio1964
01-22-2011, 11:18 PM
To Balletmom - This is my daughter's 4th brace in 3 yrs. I, too, check her brace every night and make sure it's tight enough. We also have to take it in periodically to have more padding put in. The padding seems to wear away on her hips really fast!

I've been researching and I have seen where girls who have had surgery have still been able to dance. I don't know about professionally though. I would just like to get my daughter through high school without having surgery (4 1/2 more years!!), so that she can continue to dance.

Thank you for your help!

Pooka1
01-22-2011, 11:19 PM
Why not, it could show that scoliosis is not just genetic. But I guess nobody's very interested in that result.

It is accepted that AIS is genetic.

Ballet Mom
01-22-2011, 11:20 PM
It is accepted that AIS is genetic.

It is accepted that there is a genetic influence...which I agree with.

Ballet Mom
01-22-2011, 11:30 PM
To Balletmom - This is my daughter's 4th brace in 3 yrs. I, too, check her brace every night and make sure it's tight enough. We also have to take it in periodically to have more padding put in. The padding seems to wear away on her hips really fast!

I've been researching and I have seen where girls who have had surgery have still been able to dance. I don't know about professionally though. I would just like to get my daughter through high school without having surgery (4 1/2 more years!!), so that she can continue to dance.

Thank you for your help!

It looks like you're doing all you can possibly do. You might want to try sideshift exercises if you can get your daughter to do them while she's out of the brace. They were developed by Min Mehta who was the one who developed casting for babies which cures them of their scoliosis! I wouldn't use them to replace the brace, but it might help a little in stopping anymore progression if she used them while she's waiting around for ballet, etc.

http://www.scoliosis.org/forum/showthread.php?11651-Active-Correction-by-Sideshift-Exercises-as-described-by-Min-Mehta

Also, here's a video that might make you feel better. I personally wouldn't let my daughter do that at four months unless her doctor specifically approved it! But good for Kendall.

http://www.youtube.com/watch?v=sOLWRif5STs

scolio1964
01-22-2011, 11:32 PM
To Pooka1 -
yes, I did ask her doctor about her not having started her period and growing, and he did agree with me. However, he believes that she is still growing, and I do, too. He says that when she has not grown or grown very little for 2 consecutive visits, he'll x-ray her hand to see. We're not at that point yet, unfortunately! He doesn't believe in the Scolioscore at all. He explained why, but I couldn't repeat it now! But, he said my daughter isn't a candidate for it anyway because her curve is more than 25 degrees. He also doesn't rely on the Risser sign either, but he told me he would guess that she is at Risser 0. He said the most reliable tool they have is to x-ray the hand. And, he said it should be the left hand.

It's funny - I've always wanted my kids to stop growing so fast because it means they're growing up, but I really wish she would hurry up and grow now so that we wouldn't have to go through all of this right now! UGH!!!

Elisa
01-22-2011, 11:36 PM
To the OP, like hdhugger I have a son with scoliosis not a daughter so I can't comment on the ballet thing but I do know that it is very possible for rapid progression to happen. We noticed our son's back was 'off' about fifteen months ago and now his curve is 110* and is on the urgent list for surgery. Not trying to scare you or anything b/c I do think his curve progressed at somewhat of an extreme rapid rate but obviously it can and does happen.

On a completely different note, I've always wondered why mothers enrolled their daughters in ballet in the first place b/c it seems so unnatural for their feet to be in that position. I too have a daughter but I have never encouraged nor wanted her to take up ballet b/c I didn't want her damage her feet. You moms who have your girls in ballet, aren't you concerned that their feet will end up sore and deformed? Just wondering. O_o

Ballet Mom
01-22-2011, 11:37 PM
Oh, about the growing...

My daughter is past two years post menarchal...and she is still growing. And most of my daughters classmates are coming up on age 16 and all of them are still growing. Some still have not had their first period.

I have to believe at some point they're going to stop growing! :-)

Here's a thread on studies showing that kids continue to grow and progress after skeletal maturity as used by the common indicators. I like the way your doctor is going to determine if she's continuing to grow...I hope my daughter's doctor does that too.

http://www.scoliosis.org/forum/showthread.php?11658-Growth-Beyond-Skeletal-Maturity

scolio1964
01-22-2011, 11:40 PM
To Balletmom:
thanks for the side-shift information. I'll check that out for sure. Is that similar to the Schroth method? I was reading about that and I couldn't find anything negative about it, except that there aren't many places that practice it and it's very expensive, which I guess is pretty negative! I am very curious about it, though.

I had seen Kendall's video on you-tube and had my daughter watch it, too. I was shocked that she could dance that well only 4 months after surgery. That was amazing!! It gave my daughter some hope, though.

Pooka1
01-22-2011, 11:46 PM
To Balletmom:
thanks for the side-shift information. I'll check that out for sure. Is that similar to the Schroth method? I was reading about that and I couldn't find anything negative about it, except that there aren't many places that practice it and it's very expensive, which I guess is pretty negative! I am very curious about it, though.

Ask your surgeon if there is any evidence whatsoever that PT changes the natural history of AIS.


I had seen Kendall's video on you-tube and had my daughter watch it, too. I was shocked that she could dance that well only 4 months after surgery. That was amazing!! It gave my daughter some hope, though.

Both my kids were back in school full time after surgery between 3 and 4 weeks with no problems. Many if not most kids are feeling pretty much back to normal by 4 months.

Also, our surgeon said 95% of kids need no physical restrictions whatsoever and they still get a solid fusion. He restricts everyone simply because he doesn't know who those 5% are who need restrictions to get a fusion. Some top surgeons don't restrict kids at least some kids at all. That's how good the instrumentation is now.

scolio1964
01-22-2011, 11:47 PM
To Elisa: Was your son wearing a brace when his curve progressed? If so, what kind of brace was he wearing? Did he go 15 months between x-rays? What were his measurements before the 110 degree progression? Sorry for all the questions!

As far as the "pretty" ballerina feet - I put my daughter in ballet when she was 5 because I thought she would like it. I actually wasn't thinking of her just doing ballet, but it just happened that way. I never, ever thought she would stick with it as long as she has. She just loves it and I know this because her feet hurt all the time, but she keeps going back for more!! Her feet don't look bad... yet!!!

Ballet Mom
01-22-2011, 11:48 PM
On a completely different note, I've always wondered why mothers enrolled their daughters in ballet in the first place b/c it seems so unnatural for their feet to be in that position. I too have a daughter but I have never encouraged nor wanted her to take up ballet b/c I didn't want her damage her feet. You moms who have your girls in ballet, aren't you concerned that their feet will end up sore and deformed? Just wondering. O_o

LOL! Those calluses on the big toes look just like my daughters!! Fortunately, calluses go away once they stop dancing. Nowadays, girls aren't put on point so early while the bones are so soft, so they don't tend to get the really damaged feet that they used to. (Russians can be a bit different, and many still put their kids up on pointe way too early!).

I also got my daughter spacers to put between her big toes to avoid that big toe pointing in like that, not sure if it would be classified as a bunion or not. So you can avoid permanent damage to your feet...but the feet are ugly while they are dancing, for sure!

I'm glad your son looks like he's going to get treated at this point! I do know that curves can progress extremely fast. I always thought the Canadian medical system was good!

scolio1964
01-22-2011, 11:54 PM
To Pooka1: I did ask her doctor if there was any evidence that Pilates helped scoliosis and he said no. I wish I could remember exactly what he said about the pilates. I think that he said that while pilates is good for anyone, girls who are flexible and do pilates, their scoliosis sometimes does worsen. I'm not sure that's what he meant, but that's kind of how I took it. When I'm with the doctor, I think I understand everything he says, until I try to repeat it. I didn't ask about about the side-shift or the Schroth method. That is on my list to ask him at the next appt. though. I should bring a recorder next time so I won't have to try to repeat anything he says!!

Ballet Mom
01-22-2011, 11:56 PM
To Balletmom:
thanks for the side-shift information. I'll check that out for sure. Is that similar to the Schroth method? I was reading about that and I couldn't find anything negative about it, except that there aren't many places that practice it and it's very expensive, which I guess is pretty negative! I am very curious about it, though.



No, the side-shift exercises are not part of Schroth as far as I know. They have been incorporated into the SEAS program which is in Italy. In fact, these were exercises that apparently used to be done with the Milwaukee brace, I believe, and then Min Mehta tested them as a substitute for bracing. She was quite successful, but I personally would never use exercises in lieu of a brace because as she noted herself, after about six months, some kids would lose interest and not do them.

Pooka1
01-22-2011, 11:58 PM
I should bring a recorder next time so I won't have to try to repeat anything he says!!

LOL I know what you mean! I am sure I understand him on one visit and while I can repeat what he says it has become clear that I interpreted differently than what he meant. This is not my field so I try not to beat myself up over it but I sure wish I understood more of what he says when he says it and not when I later research it and bring it back up with him and he edifies me.

Ballet Mom
01-23-2011, 12:00 AM
To Pooka1: I think that he said that while pilates is good for anyone, girls who are flexible and do pilates, their scoliosis sometimes does worsen. I'm not sure that's what he meant, but that's kind of how I took it.

Gaack! My daughter is going to summer intensives this summer where Pilates is part of the program. Now I'm going to have to worry about that also. Sheesh! What to do...what to do....?

Pooka1
01-23-2011, 12:00 AM
I think that he said that while pilates is good for anyone, girls who are flexible and do pilates, their scoliosis sometimes does worsen.

Yes but the question is whether the rate at which these kids doing pilates progress is different than the rate at which kids sitting on the couch eating ice cream progress. Without a very large, very well-controlled case study, nobody can know the answer to that, not a surgeon nor a bunny.

Elisa
01-23-2011, 12:03 AM
To Elisa: Was your son wearing a brace when his curve progressed? If so, what kind of brace was he wearing? Did he go 15 months between x-rays? What were his measurements before the 110 degree progression? Sorry for all the questions!

As far as the "pretty" ballerina feet - I put my daughter in ballet when she was 5 because I thought she would like it. I actually wasn't thinking of her just doing ballet, but it just happened that way. I never, ever thought she would stick with it as long as she has. She just loves it and I know this because her feet hurt all the time, but she keeps going back for more!! Her feet don't look bad... yet!!!
When we first noticed his back was 'off' fifteen months ago we were sure it was from bad posture b/c he was spending a lot of time on the computer gaming as a lot of young boys do. It was actually our daughter who noticed that the right side of his back had a bit of a hump on it and again we were convinced he was leaning to the side b/c of his positioning. We took him to our GP and he made him do a forward bend test which made his right side protrude a bit more and he immediately diagnosed him with scoliosis and send him for x-rays. His first set came back at 47* and was immediately referred to a spine specialist. Six months later his curve was around 75* and x-rays the other day showed he was at 110*. I don't know if anyone else around here has had such fast progression but he is one of the extremely unlucky ones who's curve just went mad. No he was never braced, not b/c his curve was too big but b/c our incompetent medical system never got around to getting him in to see a spine specialist so maybe bracing would have halted the progression, maybe not, I don't know b/c we never had the opportunity to find out.

Ballet mom, our medical system is okay up here if you have 'normal' stuff wrong with you but if you have to see a specialist, especially a pediatric specialist, forget it, get in line and wait your turn. Or as hdhugger said, 'bleed to death in the waiting room' or something like that. Sad.

Pooka1
01-23-2011, 12:08 AM
His first set came back at 47* and was immediately referred to a spine specialist. Six months later his curve was around 75* and x-rays the other day showed he was at 110*. I don't know if anyone else around here has had such fast progression but he is one of the extremely unlucky ones who's curve just went mad.

Well that is 28* in 6 months or almost 5*/month which is very fast.

What was the time between the 75* and the 110*?

scolio1964
01-23-2011, 12:10 AM
Yes but the question is whether the rate at which these kids doing pilates progress is different than the rate at which kids sitting on the couch eating ice cream progress. Without a very large, very well-controlled case study, nobody can know the answer to that, not a surgeon nor a bunny.

You are right. I even spoke with her pilates teacher about it. I was trying to blame pilates because I felt like there had to be something or someone to blame. She explained that my daughter only does 1 hour of pilates a week and she didn't do it the whole month of December and didn't start it until October. She does ballet 5 days a week for about 20 hours a week and she's done that for a couple of years, minus the summer months. It's probably not the pilates that made her curve worse. There are so many things that it could be that I've just decided that if my daughter wants to continue with the pilates, that it's her choice. I don't want to take the things she loves away without REALLY knowing they were doing her harm in the first place. Unfortunately, we'll never know what made it worse, and if it stops or continutes progressing, we won't know what caused that either.

Elisa
01-23-2011, 12:14 AM
Well that is 28* in 6 months or almost 5*/month which is very fast.

What was the time between the 75* and the 110*?

Those were the only three sets of x-rays Pooka so I really don't know. But remember, it was the chiro who brought up his second set of x-rays and it was he who measured the 75* but you and Ed both felt that it 'looked' closer to 85* to 90* remember?

scolio1964
01-23-2011, 12:14 AM
To Elisa: I am so sorry about your son, but I am glad that he is on the emergency list. I hope that it doesn't take too long to have the surgery. I wish you the very best!!

Pooka1
01-23-2011, 12:15 AM
You are right. I even spoke with her pilates teacher about it. I was trying to blame pilates because I felt like there had to be something or someone to blame. She explained that my daughter only does 1 hour of pilates a week and she didn't do it the whole month of December and didn't start it until October. She does ballet 5 days a week for about 20 hours a week and she's done that for a couple of years, minus the summer months. It's probably not the pilates that made her curve worse. There are so many things that it could be that I've just decided that if my daughter wants to continue with the pilates, that it's her choice. I don't want to take the things she loves away without REALLY knowing they were doing her harm in the first place. Unfortunately, we'll never know what made it worse, and if it stops or continutes progressing, we won't know what caused that either.

Yes I agree. It is very hard to "know" much in this area because it is damn near impossible to "show" anything in a rigorous way. A research colleague of mine likes to say, "Everybody KNOWS it but nobody SHOWS it." He was talking about something in my field but it could equally apply to bracing and PT and ballet and pilates as it related to progression in AIS.

Pooka1
01-23-2011, 12:17 AM
Those were the only three sets of x-rays Pooka so I really don't know. But remember, it was the chiro who brought up his second set of x-rays and it was he who measured the 75* but you and Ed both felt that it 'looked' closer to 85* to 90* remember?

Yes that would make the progression rate >5* a month which would be the highest I have ever read about on this group or anywhere actually.

But I was just asking you how much time elapsed between the chiro radiographs and this week. Was it about four months?

Ballet Mom
01-23-2011, 12:18 AM
Yes I agree. It is very hard to "know" much in this area because it is damn near impossible to "show" anything in a rigorous way. A research colleague of mine likes to say, "Everybody KNOWS it but nobody SHOWS it." He was talking about something in my field but it could equally apply to bracing and PT and ballet and pilates as it related to progression in AIS.

Yes, science certainly has its limitations!

Pooka1
01-23-2011, 12:20 AM
Yes, science certainly has its limitations!

Yes it does but that doesn't mean nothing is known or shown. Plenty of things have been SHOWN to the point that it is perverse to deny them.

Science is still the only game in town for knowing anything real.

Elisa
01-23-2011, 12:21 AM
To Elisa: I am so sorry about your son, but I am glad that he is on the emergency list. I hope that it doesn't take too long to have the surgery. I wish you the very best!!
Thank you. Considering he's got a crazy curve happening he really isn't in much pain at all and does do all his daily stuff pretty well which is bloody amazing to me. I wish you all the best with your daughter too and it sounds as though you're keeping a close eye on her. This forum has been invaluable to me and I'm sure it will be to you also.

Elisa
01-23-2011, 12:26 AM
Yes that would make the progression rate >5* a month which would be the highest I have ever read about on this group or anywhere actually.

But I was just asking you how much time elapsed between the chiro radiographs and this week. Was it about four months?

My brain is pretty fried right now b/c of information overload from the Portland trip and they wanted to keep the x-ray cd's so I can't even look at the dates on them but I'm pretty sure those 'chiro' x-rays were more than four months ago for sure, probably closer to seven or eight months. I'll have to go back and scroll through my original thread.

scolio1964
01-23-2011, 12:26 AM
Thank you. Considering he's got a crazy curve happening he really isn't in much pain at all and does do all his daily stuff pretty well which is bloody amazing to me. I wish you all the best with your daughter too and it sounds as though you're keeping a close eye on her. This forum has been invaluable to me and I'm sure it will be to you also.

I am glad that he's not in pain. Maybe those video games have kept him occupied!! My son is very addicted to the games. He has small scoliosis too and I will definitely keep an eye on him for sure. My family definitely has the scoli gene - as our doctor says!! I am just glad to talk to people who share the same struggles we do!!

Elisa
01-23-2011, 01:12 AM
Okay, I went back and scrolled through my original thread where I posted the x-ray pics and this is what I came up with.

First set of x-rays: Oct. 29/09 = 47*

Second set of x-rays: about six months later (Apr. 2010?) chiro guess = 75* you guys say 85*

Third set of x-rays: January 20th. 2011 = 110*

The only accurate measurement I have is from January 20th. and the other two are rough guesses b/c I'm relying on memory, chiro measurement and guesses. I do wish I had asked doctor K. for specifics but it was one of those things that I missed unfortunately. I was dropped the halo-bomb and my mind went blank.

Edit: I dunno, that seems like a bit too much time between the second and third set of x-rays. I'll think about it tomorrow, I'm too tired tonight.

hdugger
01-23-2011, 01:47 AM
I wanted to post a link to the one article I found on scoliosis and ballet (I'd been holding off, but everyone here seems pretty research-savvy). Here's the official link:

http://www.nejm.org/doi/full/10.1056/NEJM198605223142104

And then the group at early onset put up a xerox of the full study:

http://early-onset-scoliosis.com/Documents/Scoliosis%20in%20Ballet.pdf

This is a study of young women (in their early 20s) in professional ballet companies. They report a 24% prevalence rate of scoliosis, but don't say (on my quick scan) exactly how they're defining it - i.e., are they counting tiny curves? Or are all these curves over 15 degrees.

Anyway, the interesting thing (IMO) is the chart on the 3rd page where they show the age of the first period in the women with and without scoliosis. While it's possible that there's some third thing causing both the delayed onset of periods and the scoliosis, it makes more intuitive sense that the delayed periods are what's increasing the risk of scoliosis.

I only see this one study on this topic, but I do think it might be worthwhile for anyone with a child doing intensive ballet to talk to their orthopedic surgeon and maybe a general GP to get a sense of whether there's something in the intense exercise which is delaying periods and, therefore, increasing the risk of scoliosis. I absolutely wouldn't change any kids' life based just on my (probably) faulty interpretation of the research, but I would raise it with someone qualified who could either lay your fears to rest or (maybe) suggest a less intensive schedule.

hdugger
01-23-2011, 02:03 AM
Here's a related study on rhythmic gymnastics and scoliosis

http://journals.lww.com/spinejournal/Abstract/2000/06010/Scoliosis_in_Rhythmic_Gymnasts.8.aspx

They talk about a "“dangerous triad”: generalized joint laxity, delayed maturity, and asymmetric spinal loading." which is interesting, because that's kind of the same thing I attributed my son's scoliosis to (along with, maybe, a Vitamin D deficiency).

Time to pump our kids full of hormones to start puberty (really, really just kidding).

Pooka1
01-23-2011, 09:25 AM
That ballet/scoliosis paper is a good example, perhaps one of the best examples posted to the group so far, of how difficult it is to tease out causation from correlation. Further, it is remarkable to me how much rank speculation gets published. And in top shelf medical journals.

What seems to be the case in this field and perhaps other medical fields is that the situation is not only more complex than we imagine but more complex than we CAN imagine. Intuition fails.

Pooka1
01-23-2011, 10:01 AM
It's probably good at this point to remind folks that most published research findings are false. When looking at that ballet/scoliosis paper, realizing that most published results are false is not such a stretch. In fact it appears inevitable.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1182327/


Why Most Published Research Findings Are False
John P. A. Ioannidis

Summary
There is increasing concern that most current published research findings are false. The probability that a research claim is true may depend on study power and bias, the number of other studies on the same question, and, importantly, the ratio of true to no relationships among the relationships probed in each scientific field. In this framework, a research finding is less likely to be true when the studies conducted in a field are smaller; when effect sizes are smaller; when there is a greater number and lesser preselection of tested relationships; where there is greater flexibility in designs, definitions, outcomes, and analytical modes; when there is greater financial and other interest and prejudice; and when more teams are involved in a scientific field in chase of statistical significance. Simulations show that for most study designs and settings, it is more likely for a research claim to be false than true. Moreover, for many current scientific fields, claimed research findings may often be simply accurate measures of the prevailing bias. In this essay, I discuss the implications of these problems for the conduct and interpretation of research.

Pooka1
01-23-2011, 10:27 AM
Okay, I went back and scrolled through my original thread where I posted the x-ray pics and this is what I came up with.

First set of x-rays: Oct. 29/09 = 47*

Second set of x-rays: about six months later (Apr. 2010?) chiro guess = 75* you guys say 85*

Third set of x-rays: January 20th. 2011 = 110*

The only accurate measurement I have is from January 20th. and the other two are rough guesses b/c I'm relying on memory, chiro measurement and guesses. I do wish I had asked doctor K. for specifics but it was one of those things that I missed unfortunately. I was dropped the halo-bomb and my mind went blank.

Edit: I dunno, that seems like a bit too much time between the second and third set of x-rays. I'll think about it tomorrow, I'm too tired tonight.

Well, taking only the 47* and 110* as likely to be close to correct, that is a sustained (15 months!) average progression rate of ~4.2* per month. I have not read of a similar case on this group or anywhere. It seems unusual as the surgeon was mentioning to you.

Damn.

Ballet Mom
01-23-2011, 11:08 AM
It's probably good at this point to remind folks that most published research findings are false. When looking at that ballet/scoliosis paper, realizing that most published results are false is not such a stretch. In fact it appears inevitable.


There is increasing concern that most current published research findings are false. The probability that a research claim is true may depend on study power and bias, the number of other studies on the same question, and, importantly, the ratio of true to no relationships among the relationships probed in each scientific field. In this framework, a research finding is less likely to be true when the studies conducted in a field are smaller; when effect sizes are smaller; when there is a greater number and lesser preselection of tested relationships; where there is greater flexibility in designs, definitions, outcomes, and analytical modes; when there is greater financial and other interest and prejudice; and when more teams are involved in a scientific field in chase of statistical significance. Simulations show that for most study designs and settings, it is more likely for a research claim to be false than true. Moreover, for many current scientific fields, claimed research findings may often be simply accurate measures of the prevailing bias.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1182327/


Perhaps you can explain why this same comment and quote would not be applicable in research studies that you agree with, such as Scoliscore and Braist.

Pooka1
01-23-2011, 11:17 AM
Perhaps you can explain why this same comment and quote would not be applicable in research studies that you agree with, such as Scoliscore and Braist.

I don't "agree" per se with any study.

I ACKNOWLEDGE whether studies are either well designed and well controlled and well reasoned or they are not. You merely perceive that as me "agreeing" with it.

Scoliscore looks tight but more research is needed. In some fields like molecular biology, it is easier to be "tight" but that doesn't mean they are necessarily correct. In other fields like bracing and PT efficacy for AIS, it seems damn near impossible to produce a tight study for several reasons not related to the talent of the researchers.

There are no results for BrAIST as of yet. The import of that study is the open admission that there is a consensus among surgeons that the question of bracing efficacy is STILL open. After all these years. And BrAIST will not be the end all study on that.

Science works best by disproving false claims. It can prove true claims but that is generally harder. So it is easier to take apart a bracing study or disprove the conclusions than it is to prove any positive claim in a bracing study due to the known and unknown confounders.

This stuff cannot be approached in a simplistic manner.

scolio1964
01-23-2011, 11:35 AM
I wanted to post a link to the one article I found on scoliosis and ballet (I'd been holding off, but everyone here seems pretty research-savvy). Here's the official link:

http://www.nejm.org/doi/full/10.1056/NEJM198605223142104

And then the group at early onset put up a xerox of the full study:

http://early-onset-scoliosis.com/Documents/Scoliosis%20in%20Ballet.pdf

This is a study of young women (in their early 20s) in professional ballet companies. They report a 24% prevalence rate of scoliosis, but don't say (on my quick scan) exactly how they're defining it - i.e., are they counting tiny curves? Or are all these curves over 15 degrees.

Anyway, the interesting thing (IMO) is the chart on the 3rd page where they show the age of the first period in the women with and without scoliosis. While it's possible that there's some third thing causing both the delayed onset of periods and the scoliosis, it makes more intuitive sense that the delayed periods are what's increasing the risk of scoliosis.

I only see this one study on this topic, but I do think it might be worthwhile for anyone with a child doing intensive ballet to talk to their orthopedic surgeon and maybe a general GP to get a sense of whether there's something in the intense exercise which is delaying periods and, therefore, increasing the risk of scoliosis. I absolutely wouldn't change any kids' life based just on my (probably) faulty interpretation of the research, but I would raise it with someone qualified who could either lay your fears to rest or (maybe) suggest a less intensive schedule.

Ok - that is interesting. My daughter fractured her wrist at the end of October last year. The doctor who treated her said that her fracture was like that of a much younger child. I even showed her x-ray to her scoliosis doctor because it was an x-ray of her wrist and hand and I wanted him to see her growth plates. He commented that it looked like a fracture they see in younger children. I am going to take a copy of this article to her pediatrician. Although I know her scoliosis is inherited, could it be getting worse because she has not started her period which is affecting her bones? WOW!!

Ballet Mom
01-23-2011, 11:36 AM
I don't "agree" per se with any study.

I ACKNOWLEDGE whether studies are either well designed and well controlled and well reasoned or they are not. You merely perceive that as me "agreeing" with it.

Scoliscore looks tight but more research is needed. In some fields like molecular biology, it is easier to be "tight" but that doesn't mean they are necessarily correct. In other fields like bracing and PT efficacy for AIS, it seems damn near impossible to produce a tight study for several reasons not related to the talent of the researchers.

There are no results for BrAIST as of yet. The import of that study is the open admission that there is a consensus among surgeons that the question of bracing efficacy is STILL open. After all these years. And BrAIST will not be the end all study on that.

Science works best by disproving false claims. It can prove true claims but that is generally harder. So it is easier to take apart a bracing study or disprove the conclusions than it is to prove any positive claim in a bracing study due to the known and unknown confounders.

This stuff cannot be approached in a simplistic manner.

So we'll just let Scoliscore, with all its financial backers and financial incentives, change the treatment of scoliosis even though researchers can't prove or disprove bracing to your standards, one way or the other. We'll let everyone get rich associated with that test and too bad for the kids who probably would have been helped with bracing.

And yet Scoliscore's results are not accurate, they are simply put in large ranges in order to not treat great numbers of kids. And so if it turns out that they were "wrong" and their expensive test does not end up being the great redeemer for kids with scoliosis as they claim, they and their investors just say "oops, that's science" and take the money and run. Sounds like a great way to run medicine.

Did you order the study and find out why the researchers did their strange manipulations of the study to get the results they wanted to get?

Pooka1
01-23-2011, 11:39 AM
These are paranoid conspiracy accusations, not valid arguments.

What is the proof for these paranoid accusations?

Ballet Mom
01-23-2011, 11:45 AM
These are paranoid conspiracy accusations, not valid arguments.

What is the proof for these paranoid accusations?

LOL!! Back to that.

You refuse to recognize that people respond to financial incentives. Scientists are apparently above common man.

Anyone in the financial industry could tell you that this is the way the world works.

Pooka1
01-23-2011, 11:47 AM
LOL!! Back to that.

You refuse to recognize that people respond to financial incentives. Scientists are apparently above common man.

Anyone in the financial industry could tell you that this is the way the world works.

So your conclusion is every single medical paper out there is known to be false by the researchers doing the research in order to make money.

That is paranoid.

That certainly goes on but you can't simply "know" it goes on in any particular case without EVIDENCE.

Pooka1
01-23-2011, 11:49 AM
Also based on your universal claim, none of the bracing studies are true where the inventor is making money. Since you obviously don't believe that then you are being inconsistent.

Ballet Mom
01-23-2011, 12:02 PM
Ok - that is interesting. My daughter fractured her wrist at the end of October last year. The doctor who treated her said that her fracture was like that of a much younger child. I even showed her x-ray to her scoliosis doctor because it was an x-ray of her wrist and hand and I wanted him to see her growth plates. He commented that it looked like a fracture they see in younger children. I am going to take a copy of this article to her pediatrician. Although I know her scoliosis is inherited, could it be getting worse because she has not started her period which is affecting her bones? WOW!!

My daughter has a good friend in her ballet class. She is one month apart in age from my daughter. This friend has a tiny bone structure...it runs in her family. Her grandmother looks like a breath of wind would blow her away. She is an absolutely gorgeous ballerina.

She will turn sixteen in a few months. She hasn't had her first period. She is growing fast right now, she has suddenly become noticeably taller than my daughter, and my daughter has always been taller than her by several inches. She is taller than her mother by probably five inches, she is as tall, if not taller than her dad. They say they have no tall people in her family. Her legs and extremely long, just like a young kids. The long bones are known to grow longer than normal in serious ballet students with delayed menarche, and it is very noticeable in her. I will be curious when she stops growing.

She does not have any injuries or scoliosis even though she actually does more ballet than my daughter because she is schooled online and has much greater flexibility in her schedule than my daughter.

My daughter had her first period when she was thirteen. She has a slightly larger bone structure than her friend and weighs more. She had a couple of periods, and then secondary amenorrhea. She went on birth control pills last year for almost eight months in order to take a powerful medicine which can cause birth defects. She had her period for those eight months. As soon as she stopped taking them, she went back to amenorrhea. She is still growing also and will be sixteen in a few months. She was diagnosed with scoliosis when she was twelve.

All of the girls I've known with scoliosis were diagnosed way before this age. So I question how much the lack of periods affects scoliosis other than having a longer period of time to have to wear a brace due to the longer growth associated with intense ballet.

Definitely talk to your daughter's doctor. If you're concerned about progression, it might be good to modify her schedule so that she hopefully stops her growth earlier.

hdugger
01-23-2011, 12:03 PM
Ok - that is interesting.

My one strong caution is that these are just a few studies, and medical research is notoriously poor. (I used to be in medical research - I've forgotten too much to be able to interpret studies well, but I know enough to know that the research is, overall, pretty crappy compared to most other research.) So, I'd use medical research the same way you use your own observations - to note a possible trend or link between two things. Your doctor will be able to help interpret it through their years of training and experience.

That said - yes, I thought it was very interesting too. I see *a lot* of kids doing ballet on this forum. That's clearly in part because scoliosis is associated with a particular body type (tall and lean) which ballet also picks from, but it seems probable that there's something else going on as well.

hdugger
01-23-2011, 12:10 PM
She went on birth control pills last year for almost eight months in order to take a powerful medicine which can cause birth defects. She had her period for those eight months. As soon as she stopped taking them, she went back to amenorrhea. She is still growing also and will be sixteen in a few months. She was diagnosed with scoliosis when she was twelve.

Is that the same period during which you thought some part of her curve improved? We'd talked about that in terms of the other medicine, but I wonder now if it might be related to starting her period again?

[double caution to anyone reading - pure speculation on my part with zero evidence]

Ballet Mom
01-23-2011, 12:24 PM
Is that the same period during which you thought some part of her curve improved? We'd talked about that in terms of the other medicine, but I wonder now if it might be related to starting her period again?

[double caution to anyone reading - pure speculation on my part with zero evidence]

That's an interesting thought. The birth control pills were started a couple of months prior to taking the isotretinoin and lasted until about one month prior to the discontinuation of the drug because she had gained so much weight and water weight she could no longer tolerate taking them. So yes, they coincided with the reduction in her curve.

hdugger
01-23-2011, 02:24 PM
Okay, I went back and scrolled through my original thread where I posted the x-ray pics and this is what I came up with.

First set of x-rays: Oct. 29/09 = 47*

Second set of x-rays: about six months later (Apr. 2010?) chiro guess = 75* you guys say 85*

Third set of x-rays: January 20th. 2011 = 110*

That's really a lot of progression. Poor kid - I imagine it hurts to have your spine grow quickly in an odd direction. He's really been a trooper about this stuff.

I hope the MRI shows something of value. My son got one at his last doctor visit. His doctor said that, because scoliosis was so rare in boys, they liked to do MRIs to see if there was something else underlying it. In our case, that was a dead end. But, if they can find something with your son, that will help them to fine-tune his treatment.

scolio1964
01-23-2011, 03:50 PM
That's an interesting thought. The birth control pills were started a couple of months prior to taking the isotretinoin and lasted until about one month prior to the discontinuation of the drug because she had gained so much weight and water weight she could no longer tolerate taking them. So yes, they coincided with the reduction in her curve.

I think that is interesting too. I don't really understand all the studies and research, but I just think there is something about ballet and scoliosis. It may not make a difference in my daughter because I know that it is inherited, but it sure makes me think that maybe her back won't get worse if she starts her period. And, I find it really interesting that she fractured her wrist and it was like a fracture of a much younger child. That makes me think that her bones aren't as strong as they should be for her age. And is that because her body isn't producing the hormones she needs to start her period?

How much of a reduction did your daughter have while she took the birth control pills? My daughter only has 1 friend in her class who hasn't had her period either, and she's really small (5 ft. and weighs 80 lbs) - a little smaller than my daughter. They are the 2 smallest in their class. And, interestingly enough - this girl just went for a checkup with her pediatrician who noticed a small curve in her back and has recommended she see a orthopedist for scoliosis. This girl has an older sister in ballet as well, who started her period when she was 12. My daughter and her friend are both 14. I'm going to make an appt. with the pediatrician and I'll let you all know what she says. I hope that she will have an open mind!!

Pooka1
01-23-2011, 03:58 PM
My daughters have very different cycles. One started earlier than the other and is on the pill to control heavy bleeding. The other had one period and then nothing still at 16+ y.o..

They are identical twins. They both had surgical scoliosis and neither does ballet.

This is more complex than any of us can imagine and more complex than all of us together can imagine, us being bunnies.

Elisa
01-23-2011, 05:49 PM
Well, taking only the 47* and 110* as likely to be close to correct, that is a sustained (15 months!) average progression rate of ~4.2* per month. I have not read of a similar case on this group or anywhere. It seems unusual as the surgeon was mentioning to you.

Damn.

The next time I talk to him or his assistant I will ask for the measurement and date of each set of x-rays. We noticed something off with his back around fifteen months ago but obviously the curve started earlier than that so he's had scoliosis for probably closer to two years I'd think, it just wasn't visible.

Pooka1
01-23-2011, 09:10 PM
The next time I talk to him or his assistant I will ask for the measurement and date of each set of x-rays. We noticed something off with his back around fifteen months ago but obviously the curve started earlier than that so he's had scoliosis for probably closer to two years I'd think, it just wasn't visible.

Yes he had scoliosis after his curve became >10*. But there are no radiographs from then to determine the progression rate.

I am guessing the surgeon re-measured the older radiographs in addition to measuring the new ones. The progression rate is an important thing to know.

If he went from 10* to 110* in 24 months then that is an average rate of about 4* a month for two years. That seems whacking high even for short duration progressions and his lasted at least 24 months. I think that is one reason they needed the MRI.

When will you hear about the results of the MRI?

Elisa
01-24-2011, 11:43 AM
The MRI tech said the radiologist will probably look at the pics over the weekend and Dr. K. will probably look at them today but I don't know when I'll get the information, hopefully soon; got my cell phone on. He said he wanted an MRI done to rule out any other cause for his scoliosis other than AIS. As soon as I hear anything I will let you know.

Ballet Mom
01-25-2011, 04:55 PM
I think that is interesting too. I don't really understand all the studies and research, but I just think there is something about ballet and scoliosis. It may not make a difference in my daughter because I know that it is inherited, but it sure makes me think that maybe her back won't get worse if she starts her period. And, I find it really interesting that she fractured her wrist and it was like a fracture of a much younger child. That makes me think that her bones aren't as strong as they should be for her age. And is that because her body isn't producing the hormones she needs to start her period?

How much of a reduction did your daughter have while she took the birth control pills? My daughter only has 1 friend in her class who hasn't had her period either, and she's really small (5 ft. and weighs 80 lbs) - a little smaller than my daughter. They are the 2 smallest in their class. And, interestingly enough - this girl just went for a checkup with her pediatrician who noticed a small curve in her back and has recommended she see a orthopedist for scoliosis. This girl has an older sister in ballet as well, who started her period when she was 12. My daughter and her friend are both 14. I'm going to make an appt. with the pediatrician and I'll let you all know what she says. I hope that she will have an open mind!!

It could be that your daughter may not end up that tall and her curve won't have that much time to progress. I know another ballet student that was 5 ft and was diagnosed with a curve, but she ended up having a very little growth spurt and so her curve remained relatively small. She didn't end up much taller than 5 ft or so.

My daughter's structural curve didn't decrease...just her lower compensatory curve. There was no effect on the structural curve at all, which is what matters. I actually think it was the isotretinoin that had the effect not the birth control anyway, because she actually had started taking the BCPs at least a month prior to the x-ray that didn't show any curve reduction, which was prior to her starting the isotretinoin. And she had the same effect taking another powerful anti-inflammatory drug.

Talk to your daughter's pediatrician though, I don't really know how they use the BCPs in the case of pre-menarchal status. The BCP's labels explicitly states they're for girls who have already started their cycles and yet I know girls who have used them to start them....so I don't know. It will be interesting to see what her doctor says.

Ballet Mom
01-25-2011, 04:58 PM
The MRI tech said the radiologist will probably look at the pics over the weekend and Dr. K. will probably look at them today but I don't know when I'll get the information, hopefully soon; got my cell phone on. He said he wanted an MRI done to rule out any other cause for his scoliosis other than AIS. As soon as I hear anything I will let you know.

My daughter's first orthopedic surgeon told us of a story of a girl who had a curve that needed surgery, but she wanted to go play her state championship water polo game series and by the time she came back ready for the surgery, her curve was either 112 or 120 degrees. Can't remember. So it is not necessarily something wrong with him other than scoliosis, some curves just progress terribly fast. That's why they have appointments every six months, to make sure something wacky hasn't gone on with the curve. It does happen, apparently. (In fact, he told us that story because he was warning us to come back in because my daughter's curve was progressing so fast.)

Ballet Mom
01-25-2011, 05:04 PM
My daughters have very different cycles. One started earlier than the other and is on the pill to control heavy bleeding. The other had one period and then nothing still at 16+ y.o..

They are identical twins. They both had surgical scoliosis and neither does ballet.

This is more complex than any of us can imagine and more complex than all of us together can imagine, us being bunnies.

Does your one daughter do other sports or exercise? Secondary amenorrhea is apparently very common in female athletes.

Pooka1
01-25-2011, 05:42 PM
Does your one daughter do other sports or exercise? Secondary amenorrhea is apparently very common in female athletes.

She is sedentary.