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scolio1964
05-19-2012, 04:27 PM
Hello,
My daughter has scoliosis and hypokyphosis. Her doctor says that her hypokyphosis is "remarkable" - I am thinking that he means that it is pretty bad. She has been wearing a brace for over 4 years now. She started wearing a Boston-type brace and is now wears the LA brace. Her curves are now at T-33 and L-23 out-of-brace. She is also a ballet dancer; she has been dancing for 10 years now. I'm wondering if anyone can explain the hypokyphosis and how it relates to the scoliosis? Does it make the scoliosis worse? Does ballet make the scoliosis worse? Does ballet make the hypokyphosis worse? My daughter is 15 and has about 1-1/2 years left to grow.

Thanks!!

Pooka1
05-19-2012, 08:13 PM
I'm wondering if anyone can explain the hypokyphosis and how it relates to the scoliosis? Does it make the scoliosis worse?

As Gayle (LeahDragonfly) once explained to me, braces achieve a correction, in part by hypokyphosing the back. But I think it is also the case that hypokyphosis can go along naturally with scoliosis. So in your daughter's case, it could be natural with the scoliosis, or due to the brace, or both.


Does ballet make the scoliosis worse?

There is no high quality data on that to my knowledge. Rather, people who are successful at ballet might have a higher preponderance of scoliosis. Just like rhythmic gymnastics favors hypermobility which sometimes goes along with scoliosis. But it's quite common to see folks mix cause and effect on this and mistakenly think these activities cause scoliosis.


Does ballet make the hypokyphosis worse?

There is no high quality data on that to my knowledge.


My daughter is 15 and has about 1-1/2 years left to grow.

That seems very unusual. How did the surgeon determine she will grow until she is ~16.5 years old?

mariaf
05-19-2012, 10:40 PM
That seems very unusual. How did the surgeon determine she will grow until she is ~16.5 years old?

I was about to say the same thing. While every child is different, I would say girls are 'generally' done with most, if not all, of their growth by about age 14. That was the case for my daughter. I even know some girls who were told by age 12 1/2 or 13 that they had accomplished most of their growth. Of course, your daughter could be the exception but I, like Pooka, was surprised to hear they expect her to grow until she is 16 1/2.

Just out of curiosity, what were your daughter's curves 4 years ago before she was braced?

scolio1964
05-19-2012, 11:37 PM
Thanks for your responses. My daughter just started menstruating about 10 months ago, right before she turned 15. We go to the doctor every 4 months for x-rays and she has grown each time. Not a lot, only about 1/8-1/4 of an inch, but he won't x-ray her hand until she doesn't grow between visits. When she first started wearing her brace, I believe her top curve was about 28 degrees and there wasn't much of a bottom curve at all. Her curve progressed to about 40 and then we changed braces. She's doing better now, but of course I still worry.

Pooka1
05-20-2012, 09:21 AM
Thanks for your responses. My daughter just started menstruating about 10 months ago, right before she turned 15. We go to the doctor every 4 months for x-rays and she has grown each time. Not a lot, only about 1/8-1/4 of an inch, but he won't x-ray her hand until she doesn't grow between visits. When she first started wearing her brace, I believe her top curve was about 28 degrees and there wasn't much of a bottom curve at all. Her curve progressed to about 40 and then we changed braces. She's doing better now, but of course I still worry.

She got up to 40* but is now 33* out of brace. Since that doesn't happen in AIS, I looked back in the threads and sure enough, you found your daughter's curve very early making this a JIS case. Case solved.

Maybe she can get even lower permanently if she does have growth left.

scolio1964
05-20-2012, 12:07 PM
She got up to 40* but is now 33* out of brace. Since that doesn't happen in AIS, I looked back in the threads and sure enough, you found your daughter's curve very early making this a JIS case. Case solved.

Maybe she can get even lower permanently if she does have growth left.

Yes, I found it when she was 7, although she didn't need the brace until she was about 11. I had surgery when I was 15, and there are several people on my mom's side who have it, so I checked her all the time when she was little. I wanted to be able to keep her from having surgery. I don't know if that will be the case, but I hope so. What do you mean by "case solved"?

Pooka1
05-20-2012, 12:16 PM
Braces don't claim to permanently reduce curves. They only claim to try to halt progression. But your daughter's curve appears to have been reduced. That doesn't happen in AIS which I assumed you were dealing with. So this was a mystery that needed "solving." The solution was you are dealing with JIS not AIS.

Another "solution" would be if you removed the brace just prior to the radiograph and didn't wait 24-48 hours. But that would be a false solution.

scolio1964
05-20-2012, 04:15 PM
Braces don't claim to permanently reduce curves. They only claim to try to halt progression. But your daughter's curve appears to have been reduced. That doesn't happen in AIS which I assumed you were dealing with. So this was a mystery that needed "solving." The solution was you are dealing with JIS not AIS.

Another "solution" would be if you removed the brace just prior to the radiograph and didn't wait 24-48 hours. But that would be a false solution.

She always has her brace off at least 24 hours before the x-ray. I didn't realize that a brace can improve curves in JIS, not in AIS. I do believe that she is still growing, even though she's almost 16, so I am hopeful that her curves will improve. Even when we're told that she's not growing anymore, she still will continue to wear her brace. We've heard too many stories of people whose curves progressed after they thought they were finished growing.

Pooka1
05-20-2012, 04:22 PM
She always has her brace off at least 24 hours before the x-ray. I didn't realize that a brace can improve curves in JIS, not in AIS.

There are several testimonials where braces reduced JIS curves on this forum. In contrast, there is not a single one for a brace reducing an AIS curve.


I do believe that she is still growing, even though she's almost 16, so I am hopeful that her curves will improve. Even when we're told that she's not growing anymore, she still will continue to wear her brace. We've heard too many stories of people whose curves progressed after they thought they were finished growing.

How long after she finishes growing will she wear the brace do you think?

TAMZTOM
05-20-2012, 07:57 PM
Hello,
My daughter has scoliosis and hypokyphosis. Her doctor says that her hypokyphosis is "remarkable" - I am thinking that he means that it is pretty bad. She has been wearing a brace for over 4 years now. She started wearing a Boston-type brace and is now wears the LA brace. Her curves are now at T-33 and L-23 out-of-brace. She is also a ballet dancer; she has been dancing for 10 years now. I'm wondering if anyone can explain the hypokyphosis and how it relates to the scoliosis? Does it make the scoliosis worse? Does ballet make the scoliosis worse? Does ballet make the hypokyphosis worse? My daughter is 15 and has about 1-1/2 years left to grow.

Thanks!!

Hi
I have an 11 yr old with scoliosis and hypokyphosis. As Pooka (Sharon) has said, the HK can be brace induced (common) or hand-in-hand with the scoliosis. My daughter is hand-in-hand.
The HK is (put simply) a flattening or decrease of the natural outward curve of the upper (thoracic) spine. In some kids, the scapula touch together in the middle of the back.

My daughter STARTED ballet about 3 - 4 months ago. In my opinion, ballet CAN make scoliosis worse (e.g., loading the curves leaping), but can also assist in correction (spinal flexibility and strength). (There are a few ballerinas with curves = or > than your daughter's; Wendy Whelan, for example, exercises to specifically correct her scoliosis after her ballet.) I've heard anecdotal stuff about ballet increasing lumbar lordosis.

Interesting that you've been told your daughter will grow for a year or so still. Coincidentally, last week, our spine surgeon remarked that my daughter is probably around 1 - 1.5 years BEHIND typical growth for a kid her age. Is your daughter low-BMI (is she slightly built)? Appetite? Last summer, during a Schroth clinic, we met an almost 17 year old girl and her parents; late menarche (15.5), grew INCHES thereafter, and only then did her curves take off (T55, L27).

Although we didn't diagnose our kid until 10 yrs old, she is definitely JIS--around 6 yrs, we had a surgeon friend check her back after she repeatedly complained of "discomfort". All seemed perfect. She grew a lot just before her 10th birthday and then cat popped out of the bag.

If my kid gets to the same age as your kid, with curves at the same level as your kid's, I'd sleep easier, but, like you, be vigilant with corrective exercise and possibly bracing. (I'm on the fence re. bracing: in my experience, they can do a lot of damage or a lot of good.)

Keep in touch.
Regards
Tom

scolio1964
05-20-2012, 10:36 PM
There are several testimonials where braces reduced JIS curves on this forum. In contrast, there is not a single one for a brace reducing an AIS curve.



How long after she finishes growing will she wear the brace do you think?

Well, then I'm glad that she is JIS and not AIS!! I think it will depend on when the doctors tell me she's finished growing. I think if she just sleeps in the brace, that might be okay, but I don't know. She's been wearing a brace for so long now, that she's used to sleeping in it. She finds it weird to sleep without it on the one night every four months she has her x-ray. I read somewhere that some girls can still grow until they are 21. I don't know if she will wear until then, if she has any say-so, but if I have any say-so, she'll still be sleeping in it.

scolio1964
05-20-2012, 10:55 PM
Hi
I have an 11 yr old with scoliosis and hypokyphosis. As Pooka (Sharon) has said, the HK can be brace induced (common) or hand-in-hand with the scoliosis. My daughter is hand-in-hand.
The HK is (put simply) a flattening or decrease of the natural outward curve of the upper (thoracic) spine. In some kids, the scapula touch together in the middle of the back.

My daughter STARTED ballet about 3 - 4 months ago. In my opinion, ballet CAN make scoliosis worse (e.g., loading the curves leaping), but can also assist in correction (spinal flexibility and strength). (There are a few ballerinas with curves = or > than your daughter's; Wendy Whelan, for example, exercises to specifically correct her scoliosis after her ballet.) I've heard anecdotal stuff about ballet increasing lumbar lordosis.

Interesting that you've been told your daughter will grow for a year or so still. Coincidentally, last week, our spine surgeon remarked that my daughter is probably around 1 - 1.5 years BEHIND typical growth for a kid her age. Is your daughter low-BMI (is she slightly built)? Appetite? Last summer, during a Schroth clinic, we met an almost 17 year old girl and her parents; late menarche (15.5), grew INCHES thereafter, and only then did her curves take off (T55, L27).

Although we didn't diagnose our kid until 10 yrs old, she is definitely JIS--around 6 yrs, we had a surgeon friend check her back after she repeatedly complained of "discomfort". All seemed perfect. She grew a lot just before her 10th birthday and then cat popped out of the bag.

If my kid gets to the same age as your kid, with curves at the same level as your kid's, I'd sleep easier, but, like you, be vigilant with corrective exercise and possibly bracing. (I'm on the fence re. bracing: in my experience, they can do a lot of damage or a lot of good.)

Keep in touch.
Regards
Tom

Hi Tom,
I will have to go back now and look at my daughter's first x-rays to see if she had hypokyphosis then. The first brace she wore, I've heard, can encourage the hypokyphosis. I didn't know that at the time. I sure wish I did.

I wonder about the ballet. I have been wondering about the flexibility, too. My daughter's flexibility in her back has decreased tremendously since she has worn her brace. I wonder if that is good because then her spine won't move around so much?? Or is it bad because it won't move around so much and that makes it harder to correct in her brace?? I find all of this very complicated. My daughter just loves ballet, though. That has been her motivation to wear her brace. She would like to dance professionally someday.

Yes, her BMI is extremely low. We were very worried for a long while because of the late-menarche, but her doctor assured me she was fine and right on track. She did grow 3 inches the year her curves progressed the most. Since those 3 inches, she's just grown about 1 inch, and that's been 1-1/2 years. I am really hoping that she does not grow much more, or if she does grow, that it will be slow growth.

I'm not sure about the brace either. I just knew that if her curves progressed to surgery level, like mine did, she wouldn't be able to dance professionally. So, I've just tried to do everything I can to try to prevent it. She has learned a little of the Schroth and we are going this summer for a 2-week course in Wisconsin.

Is your daughter currently wearing a brace? Do you know of any specific exercises that can help the hypokyphosis?

TAMZTOM
05-21-2012, 06:34 AM
My daughter's flexibility in her back has decreased tremendously since she has worn her brace. I wonder if that is good because then her spine won't move around so much?? Or is it bad because it won't move around so much and that makes it harder to correct in her brace??
My understanding is that spinal flexibility is required to enable curve correction. If a kid was hyper-corrected in-brace (so had a sufficiently flexible spine to get to that level of IB correction), the spinal ligaments would also be corrected into that alignment; one could theorise that this inflexibility could benefit stability. (There is no medical unanimity on this one, frustratingly.)


My daughter just loves ballet, though. That has been her motivation to wear her brace. She would like to dance professionally someday.
Ditto.


Yes, her BMI is extremely low.
There is a low-BMI subset of scoliotic girls. Tamzin is definitely in that subset. Has you daughter had a MRI scan?


She has learned a little of the Schroth and we are going this summer for a 2-week course in Wisconsin.
We did a 4 week Schroth clinic in London in July 2011 and have been doing Schroth + other exercises since (torso rotation added recently, rowing, Roman Chair, some Pilates specifically for flexibility and strength without compromising the curves.


Is your daughter currently wearing a brace?
Tamzin wore a SpineCor brace from Dec until May (last week). At all FOUR fitting and adjustment appnts. (Dec, Jan, March, May), I queried the compression that was being exerted by the shoulder bands. Examined clinically by our spine surgeon, he estimated her curves at "25 - 30 degrees", corrected from circa. T41, L39 last June. The in-brace scan, however, showed the curves at 37 - 40 thoracic, 32 - 34 lumbar. In short, the bloody brace WAS compressing her spine. She hasn't worn it since. (I haven't decided whether the resume brace wearing: the SpineCor could be made to fit with different shoulder bands, but my suggestions fall outside the SpineCor rigid protocol and configuration script; we could get a Cheneau, but I simply have too many concerns despite the well-known benefits. Maybe I just think too much!)
PS: Tamzin has grown approx. 7 cm since last June, 3 cm since March.


Do you know of any specific exercises that can help the hypokyphosis?
We exercise CONSTANTLY to correct the hypokyphosis. PM (personal message) me and we'll talk.

Regards
Tom

3sisters
05-21-2012, 11:57 AM
We're there, too! You said your daughter has hypokyphosis; mine does, too, but has only worn her brace for a few months. Ours is surely not brace induced at this early stage, and isn't for many, I venture; hypokyphosis seems to often go hand in hand with the scoliosis AND/OR ballet. (We are NOT stopping dance; the strength and flexibility benefits far outweigh my concerns.)
Glad to see you on the nsf. We are in a Cheneau brace (which I think is much like the LA Brace?) and I absolutely plan on seeing her more corrected after brace wear. Our doctor said that although he often recommends surgery for children at my daughter's curves degrees (43 last week,) at the last in-brace xray, upon seeing her in-brace correction, he said he definitely recommends that we continue with our conservative treatment plan of exercise + brace. He expects her to be 30-35 degrees after brace weaning (He is not a quack 'guaranteeing' this, just based on his experience. Her inbrace correction is currently 12 degrees.)
I'm trying for better, but will take that if possible. We live in Germany, and our doctor IS a surgeon and the head of the spine team at Heidelberg University Hospital. HE has seen enough post brace-wear to acknowledge real correction happens, and I believe it. We did have an MRI and ruled out neurological problems.

mariaf
05-21-2012, 02:49 PM
I read somewhere that some girls can still grow until they are 21.

While there is always an exception to the rule, I would say it is extremely rare for a girl to grow to age 21.

TAMZTOM
05-21-2012, 06:03 PM
...hypokyphosis seems to often go hand in hand with the scoliosis AND/OR ballet. (We are NOT stopping dance; the strength and flexibility benefits far outweigh my concerns.)
We have to make decisions, our's is the same as yours. I'd add that ballet offers an opportunity for these 3 girls to practice practice practice corrective movement patterns. Double-jackpot, be good at your ballet and you correct your curves.

Just to clarify to scolio1964, 3sisters' daughter is at 12 and 0 in-brace, i.e., about 20 - 30 degrees correction (not 12 degrees correction).

Off at a tangent (bracing and exercise), but relevant to scolio1964's information, this is from an article I've been 'trying' to absorb:



Ballet dancers, hypoestrogenism and leptin
The increased prevalence of mild right thoracic scoliosis in ballet dancers is associated with delayed menarche, secondary
ameorrhea, anorectic behavior, osteopenia, fractures and prolonged hypoestrogenism [334]. The LHS concept for AIS pathogenesis applied to the scolioses of ballet dancers suggests that presumed low leptin levels [335] are associated with:
(1) increased selective hypothalamic sensitivity to leptin;
(2) increased sympathoactivation with asymmetry expressed in the spine as scoliosis;
(3) limited energy being diverted away from the gonadotroph-gonadal axis, possibly also the hypothalamic-ituitaryadrenal
axis [335] and GH/IGF (somatotropic) axis; and
(4) osteopenia and fractures.
Treatment for the menarcheal delay includes oral contraceptive therapy [335].

Growth to 21 years! Totally. Scolio1964's point about growth continuing well past the norm is well taken. For these low-BMI subset of scoliotic girls, it may actually be the norm.

scolio1964
05-21-2012, 08:25 PM
We have to make decisions, our's is the same as yours. I'd add that ballet offers an opportunity for these 3 girls to practice practice practice corrective movement patterns. Double-jackpot, be good at your ballet and you correct your curves.

Just to clarify to scolio1964, 3sisters' daughter is at 12 and 0 in-brace, i.e., about 20 - 30 degrees correction (not 12 degrees correction).

Off at a tangent (bracing and exercise), but relevant to scolio1964's information, this is from an article I've been 'trying' to absorb:



Growth to 21 years! Totally. Scolio1964's point about growth continuing well past the norm is well taken. For these low-BMI subset of scoliotic girls, it may actually be the norm.

The article is interesting. I read something about this before and asked our pediatrician if there could be a connection between fractures and delayed menarche. My daughter has had several stress fractures and also fractured her wrist. Our pediatrician didn't think there was any connection, but I have always thought that all of this was connected.

3sisters' daughter has had an amazing correction in her brace!!

To answer your previous question, no my daughter has never had an MRI. Do you think she needs one? The doctor has never suggested it to me.

I will PM you.

Thanks!

scolio1964
05-21-2012, 08:31 PM
We're there, too! You said your daughter has hypokyphosis; mine does, too, but has only worn her brace for a few months. Ours is surely not brace induced at this early stage, and isn't for many, I venture; hypokyphosis seems to often go hand in hand with the scoliosis AND/OR ballet. (We are NOT stopping dance; the strength and flexibility benefits far outweigh my concerns.)
Glad to see you on the nsf. We are in a Cheneau brace (which I think is much like the LA Brace?) and I absolutely plan on seeing her more corrected after brace wear. Our doctor said that although he often recommends surgery for children at my daughter's curves degrees (43 last week,) at the last in-brace xray, upon seeing her in-brace correction, he said he definitely recommends that we continue with our conservative treatment plan of exercise + brace. He expects her to be 30-35 degrees after brace weaning (He is not a quack 'guaranteeing' this, just based on his experience. Her inbrace correction is currently 12 degrees.)
I'm trying for better, but will take that if possible. We live in Germany, and our doctor IS a surgeon and the head of the spine team at Heidelberg University Hospital. HE has seen enough post brace-wear to acknowledge real correction happens, and I believe it. We did have an MRI and ruled out neurological problems.

Wow! Your daughter has an amazing in-brace correction! I don't think we've ever had that much of a in-brace correction.

Yes, the LA brace is similar to the Cheneau brace. My daughter has worn this brace for a little more than a year.

My daughter has not had an MRI. Her doctor has not suggested it and I have never thought to ask for one.

scolio1964
05-21-2012, 08:34 PM
While there is always an exception to the rule, I would say it is extremely rare for a girl to grow to age 21.

I think it is rare too, but my daughter's growth has been delayed almost all of her life, so it really wouldn't surprise me if she grew until then. I hope not for her sake. That would mean she would be wearing a brace for 10 years.

Pooka1
05-21-2012, 08:37 PM
To answer your previous question, no my daughter has never had an MRI. Do you think she needs one? The doctor has never suggested it to me.

It's an interesting question who gets referred for MRI.

I think atypical curves (left T curves, etc.) get referred and also fast moving curves (my Kid 1). In contrast, my Kid 2 had a typical right T curve that didn't ring the bell on speed of progression for sustained periods of time and so was never referred.

I hope others comment on if they have been referred for MRI and why.

Pooka1
05-21-2012, 08:41 PM
I think it is rare too, but my daughter's growth has been delayed almost all of her life, so it really wouldn't surprise me if she grew until then. I hope not for her sake. That would mean she would be wearing a brace for 10 years.

In your daughter's case, I think that would be an opportunity for more actual permanent correction of her curve if what you have seen to date is any indication.

Your case is so interesting because I don't think there have been many testimonials on the forum of JIV cases hitting the adolescent growth spurt. And to date, the JIS curve is still behaving like a pre-growth spurt curve with correction retained out of brace. I think that is fascinating.

scolio1964
05-21-2012, 10:56 PM
It's an interesting question who gets referred for MRI.

I think atypical curves (left T curves, etc.) get referred and also fast moving curves (my Kid 1). In contrast, my Kid 2 had a typical right T curve that didn't ring the bell on speed of progression for sustained periods of time and so was never referred.

I hope others comment on if they have been referred for MRI and why.

My daughter has a friend in her ballet class who also has scoliosis. She goes to the same doctor as we do and he ordered an MRI on her. The parents said it was because she was having pain and that her curve had progressed pretty quickly. My daughter has pain sometimes and I think it progressed pretty quickly (9 degrees in 6 months).

scolio1964
05-21-2012, 11:07 PM
In your daughter's case, I think that would be an opportunity for more actual permanent correction of her curve if what you have seen to date is any indication.

Your case is so interesting because I don't think there have been many testimonials on the forum of JIV cases hitting the adolescent growth spurt. And to date, the JIS curve is still behaving like a pre-growth spurt curve with correction retained out of brace. I think that is fascinating.

I think it's frustrating! And so terribly complicated! I guess I never considered her to be a JIV case because she didn't actually start wearing the brace until she was 11. Her doctor has been pretty impressed with her x-rays, though. I am happy with her x-rays too, but I know that she has much more time ahead of her in the brace and sometimes it feels like there's no end in sight.

Pooka1
05-22-2012, 06:36 AM
My daughter has pain sometimes and I think it progressed pretty quickly (9 degrees in 6 months).

That's 1.5* per month. My Kid 1's curve progressed 5* per month for at least 5 months straight. She was referred.

Pooka1
05-22-2012, 06:49 AM
I think it's frustrating! And so terribly complicated! I guess I never considered her to be a JIV case because she didn't actually start wearing the brace until she was 11. Her doctor has been pretty impressed with her x-rays, though. I am happy with her x-rays too, but I know that she has much more time ahead of her in the brace and sometimes it feels like there's no end in sight.

If she was >10* before she turned 10 then I think that is a JIS case by definition. Someone correct me if I'm wrong.

Because she has growth left and is below 35* then you might want to consider VBS if the bracing is too hard.

Didn't your doctor marvel at her out of brace correction? That simply does not happen in most cases because most cases are AIS. He can't have seen that very often.

Part of my issue with braces is that absent a correction like you have seen with JIS, it is impossible to know if the brace is working with AIS. That's because the best hope is to halt progression but there is evidence that curves, even large ones, stop on their own. There is a huge overtreatment factor in bracing for AIS. If kid knew that, they would be rational to not wear the brace. But if the brace is permanently reducing the curve as in JIS, then it becomes rational if you are near the magic 30* and therefore likely to avoid surgery for life. If my kids had JIS rather than AIS and I saw out of brace reductions bigger than the noise and they were near 30* I certainly would be pushing the brace wearing. But that is a very rarefied example. Few are in that situation so brace wear is still controversial for the majority of kids and will be until someone ponies up adequate evidence it works in AIS.

Just my opinion.

scolio1964
05-22-2012, 10:05 AM
If she was >10* before she turned 10 then I think that is a JIS case by definition. Someone correct me if I'm wrong.

Because she has growth left and is below 35* then you might want to consider VBS if the bracing is too hard.

Didn't your doctor marvel at her out of brace correction? That simply does not happen in most cases because most cases are AIS. He can't have seen that very often.

Part of my issue with braces is that absent a correction like you have seen with JIS, it is impossible to know if the brace is working with AIS. That's because the best hope is to halt progression but there is evidence that curves, even large ones, stop on their own. There is a huge overtreatment factor in bracing for AIS. If kid knew that, they would be rational to not wear the brace. But if the brace is permanently reducing the curve as in JIS, then it becomes rational if you are near the magic 30* and therefore likely to avoid surgery for life. If my kids had JIS rather than AIS and I saw out of brace reductions bigger than the noise and they were near 30* I certainly would be pushing the brace wearing. But that is a very rarefied example. Few are in that situation so brace wear is still controversial for the majority of kids and will be until someone ponies up adequate evidence it works in AIS.

Just my opinion.

Yes, her doctor was kind of speechless after her first x-ray wearing this brace. It's not a brace that he uses, so I think he was skeptical about it at first.

Her curve was definitely more than 10* when she was 10. She was more than that at age 7.

I understand what you're saying about the overtreatment in bracing. As a parent, it's hard to know what the right thing to do is for your kid(s). When my daughter reached the magic # of 25*, the doctor said brace and I didn't even think to question it. Mostly because I had surgery when I was young and wasn't given the opportunity to brace. I haven't really had problems from the surgery, but I also wasn't a dancer like my daughter is. My goal is to just prevent the surgery as long as she is wanting to dance, hopefully that will be for life, but who really knows?

Pooka1
05-22-2012, 02:51 PM
Yes, her doctor was kind of speechless after her first x-ray wearing this brace. It's not a brace that he uses, so I think he was skeptical about it at first.

It's probably not the brace per all the papers I have seen on bracing in general and that brace in particular. It's the JIS versus AIS in my opinion.

scolio1964
05-23-2012, 12:42 PM
It's probably not the brace per all the papers I have seen on bracing in general and that brace in particular. It's the JIS versus AIS in my opinion.

You might be right, but why wouldn't the doctor know that? He really thinks it's the brace. He has never said anything about JIS versis AIS. I intend on asking him at our next visit.

Pooka1
05-23-2012, 12:48 PM
You might be right, but why wouldn't the doctor know that? He really thinks it's the brace. He has never said anything about JIS versis AIS. I intend on asking him at our next visit.

I would like to know what evidence he is using to suspect it is the brace. He might feel it is the brace but he will not be able to point to any evidence it is. In the meantime, we have other cases of JIS with curves reduced out of brace using a VARIETY of braces, NOT just the LA brace.

If it is the brace then why doesn't the world know that LA Braces work to avoid surgery?

scolio1964
05-23-2012, 12:55 PM
I would like to know what evidence he is using to suspect it is the brace. He might feel it is the brace but he will not be able to point to any evidence it is. In the meantime, we have other cases of JIS with curves reduced out of brace using a VARIETY of braces, NOT just the LA brace.

If it is the brace then why doesn't the world know that LA Braces work to avoid surgery?

I guess he's just using her x-rays as evidence. He is using my daughter as kind of a case study. They don't offer the LA brace here or any brace like it. If he likes the results, he is going to have the orthotist learn how to make this type of brace. That won't happen in my daughter's brace-life, though. Until now, I really thought it was the brace, too, but now I'm wondering about the JIS.

rohrer01
05-23-2012, 02:18 PM
Hello,

I just wanted to pipe in here on a few things. I am a grown woman with an upper Left T-curve. I went mostly through my childhood without being diagnosed. I was diagnosed at 16 with AIS, although I'm not convinced that it really isn't JIS, since I've had back pain since age 8 and could feel the deformity by age 12. I have severe hypokyphosis and have never been braced. So hypokyphosis often goes with the territory of thoracic curves. I also had late menarche at nearly 15 years of age. I have always had very low BMI, ate like a monster when I was a kid. I was super flexible, although never in ballet, I could do a back bend and grab my ankles into my early 20's AND put both feet behind my head (hamstrings were always tight, though). Band was my thing. :-) My curves remained pretty much stable from 16 until I turned 40. Now they are on the move again. As far as my growth, at 15 I was 5' 8-1/4" and at 16 I was 5' 7-1/2". I have pretty much stayed there, except for at my last scoli check with the surgeon I was, I believe, 5' 7". So I would say my growth stopped about a year and a half after menarche. I'm telling you this because perhaps you can use my information as another tool to help you decipher some of this stuff about growth, flexibility, low BMI, and late menarche. I have strong bones, however, and have only broken 'maybe' two in my lifetime. I never went to the doc when I think I broke my tailbone. I broke a finger a few years ago, but who's finger wouldn't break getting slammed in a heavy metal door? LOL Of course, it wasn't funny at the time.

Another peice to the growth puzzle is that my daughter has mild AIS (not sure if it's JIS because she wasn't diagnosed until age 11). Stupidly I never followed up with her past age 12 because a general ortho said she was about done growing and didn't need any follow-up. ARGH!!! My daughter has been about 5' 4" for a very long time. Since she had her baby at age 18, she's grown at least another 1/2". She's 22 now, and I believe she's done. She measured 5' 5-1/2" at the doc the other day, but that was with her shoes on. So, yes, late growth IS possible. She was also low BMI but not late menarche as she had just turned 13.

My youngest son also had JIS. He was diagnosed at about age 8 with a very mild curve. By age 14 his curve was GONE. We didn't do a thing. He's as straight as an arrow. However he does have some vertebrae with spina bifida occulta, the same as me. I realize that boys are a whole different ballgame. They are late growers. My 24 year old son is still growing! He's the only one with no back problems that I'm aware of.

I hope this info was at least a little informative, if nothing else. My advice is don't do what I did. Follow your daughter closely. I didn't have access to a scoli doc for my kids, or wasn't aware that I could have access to one (I didn't have access to the www). Fortunately, everything turned out fine. My daughter will take herself to the doc when she's hurting bad enough. I've educated them all on this condition and they are adults now so it's out of my hands.

Regards,
Rohrer01

Pooka1
05-23-2012, 03:16 PM
I guess he's just using her x-rays as evidence. He is using my daughter as kind of a case study. They don't offer the LA brace here or any brace like it. If he likes the results, he is going to have the orthotist learn how to make this type of brace. That won't happen in my daughter's brace-life, though. Until now, I really thought it was the brace, too, but now I'm wondering about the JIS.

Look, I would like to make it abundantly clear that there is not enough data to rule anything in or out at this point. All we have are artifact-ridden anecdotes. That includes the surgeon unless he did a high quality controlled study.

This is a very variable condition.

In your daughter's case, her reduction could be the brace alone, the JIS alone, or some combination of the two. For the next JIS kid, it could be the brace alone, the JIS or some combination of the two NOT necessarily the same as your daughter. There are known unknowns and unknown unknowns. We have Katz et al. (2010) claiming amount of correction in brace did NOT correlate with success. It is very clear that we have not even identified the master variables most likely.

In my LAY opinion, given the ANECDOTES on the group, there is MORE evidence for the JIS explanation than the LA Brace explanation but I could be (read: likely) completely wrong. Not my field nor is it the surgeon's field to the extent he only has his uncontrolled observations which can't in principle separate unnecessary bracing from successful bracing. But in the unusual case of reductions, that in my opinion is much more likely to be due to the treatment rather than natural history for curves >30*.

And finally, from the LA Brace results page...

http://thelabrace.com/result.php


* Note - we do not normally recommend or suggest The LA Brace for curves over 45 degrees. The 3 cases mentioned here with curves of 50+ degrees we advised against bracing but were pressed to try The LA Brace by the patients/families. The preliminary results stated here are encouraging but the final outcomes of bracing are not normally considered until at least 2 years post discharge from brace treatment.

I have seen data showing the need to wait at least 2 years after last taking off the brace but I slightly doubt many of those kids started at -7* from the highest curve. Who knows. There is a reason your surgeon was surprised at the -7* out of brace... he can't have seen that very often.

scolio1964
05-24-2012, 12:05 AM
Hello,

I just wanted to pipe in here on a few things. I am a grown woman with an upper Left T-curve. I went mostly through my childhood without being diagnosed. I was diagnosed at 16 with AIS, although I'm not convinced that it really isn't JIS, since I've had back pain since age 8 and could feel the deformity by age 12. I have severe hypokyphosis and have never been braced. So hypokyphosis often goes with the territory of thoracic curves. I also had late menarche at nearly 15 years of age. I have always had very low BMI, ate like a monster when I was a kid. I was super flexible, although never in ballet, I could do a back bend and grab my ankles into my early 20's AND put both feet behind my head (hamstrings were always tight, though). Band was my thing. :-) My curves remained pretty much stable from 16 until I turned 40. Now they are on the move again. As far as my growth, at 15 I was 5' 8-1/4" and at 16 I was 5' 7-1/2". I have pretty much stayed there, except for at my last scoli check with the surgeon I was, I believe, 5' 7". So I would say my growth stopped about a year and a half after menarche. I'm telling you this because perhaps you can use my information as another tool to help you decipher some of this stuff about growth, flexibility, low BMI, and late menarche. I have strong bones, however, and have only broken 'maybe' two in my lifetime. I never went to the doc when I think I broke my tailbone. I broke a finger a few years ago, but who's finger wouldn't break getting slammed in a heavy metal door? LOL Of course, it wasn't funny at the time.

Another peice to the growth puzzle is that my daughter has mild AIS (not sure if it's JIS because she wasn't diagnosed until age 11). Stupidly I never followed up with her past age 12 because a general ortho said she was about done growing and didn't need any follow-up. ARGH!!! My daughter has been about 5' 4" for a very long time. Since she had her baby at age 18, she's grown at least another 1/2". She's 22 now, and I believe she's done. She measured 5' 5-1/2" at the doc the other day, but that was with her shoes on. So, yes, late growth IS possible. She was also low BMI but not late menarche as she had just turned 13.

My youngest son also had JIS. He was diagnosed at about age 8 with a very mild curve. By age 14 his curve was GONE. We didn't do a thing. He's as straight as an arrow. However he does have some vertebrae with spina bifida occulta, the same as me. I realize that boys are a whole different ballgame. They are late growers. My 24 year old son is still growing! He's the only one with no back problems that I'm aware of.

I hope this info was at least a little informative, if nothing else. My advice is don't do what I did. Follow your daughter closely. I didn't have access to a scoli doc for my kids, or wasn't aware that I could have access to one (I didn't have access to the www). Fortunately, everything turned out fine. My daughter will take herself to the doc when she's hurting bad enough. I've educated them all on this condition and they are adults now so it's out of my hands.

Regards,
Rohrer01

Thanks for this. Your story is very interesting and it is helpful. One thing I've learned through all of this is that everyone is different. I was a late grower and a slow grower. I don't think I ever had a big growth spurt as a kid. The same kind of thing is happening with my daughter. I think that being a late grower and a slow grower is a frustrating thing though!!

I'm glad that you shared your story and I will take your advice and keep following my daughter closely.

Thanks!!

scolio1964
05-24-2012, 12:15 AM
Look, I would like to make it abundantly clear that there is not enough data to rule anything in or out at this point. All we have are artifact-ridden anecdotes. That includes the surgeon unless he did a high quality controlled study.

This is a very variable condition.

In your daughter's case, her reduction could be the brace alone, the JIS alone, or some combination of the two. For the next JIS kid, it could be the brace alone, the JIS or some combination of the two NOT necessarily the same as your daughter. There are known unknowns and unknown unknowns. We have Katz et al. (2010) claiming amount of correction in brace did NOT correlate with success. It is very clear that we have not even identified the master variables most likely.

In my LAY opinion, given the ANECDOTES on the group, there is MORE evidence for the JIS explanation than the LA Brace explanation but I could be (read: likely) completely wrong. Not my field nor is it the surgeon's field to the extent he only has his uncontrolled observations which can't in principle separate unnecessary bracing from successful bracing. But in the unusual case of reductions, that in my opinion is much more likely to be due to the treatment rather than natural history for curves >30*.

And finally, from the LA Brace results page...

http://thelabrace.com/result.php



I have seen data showing the need to wait at least 2 years after last taking off the brace but I slightly doubt many of those kids started at -7* from the highest curve. Who knows. There is a reason your surgeon was surprised at the -7* out of brace... he can't have seen that very often.

I get what you're saying. If my daughter gets through this without needing surgery, we won't know if it's because of the brace or not. I understand that. You've just brought up the JIS and I hadn't thought of that before. It's just more for me to think about. I want to have as much information as I can. When she was first diagnosed, I thought I knew about scoliosis because I had it, but I've learned so much more since she started to progress and I've had to look at alternative treatments. I appreciate your opinions.

mariaf
05-24-2012, 09:30 AM
I think it is rare too, but my daughter's growth has been delayed almost all of her life, so it really wouldn't surprise me if she grew until then. I hope not for her sake. That would mean she would be wearing a brace for 10 years.

Then it sounds like she could be the exception to the rule and grow a few years past when most girls stop growing. There is always the 'norm' and then the exceptions on both ends of the spectrum. My son is also considered a late bloomer - his bone age is 1-2 years behind his actual age - and I'm not sure if it is connected, but he even lost his baby teeth later than most.

Pooka1
05-24-2012, 11:50 AM
I get what you're saying. If my daughter gets through this without needing surgery, we won't know if it's because of the brace or not. I understand that. You've just brought up the JIS and I hadn't thought of that before. It's just more for me to think about. I want to have as much information as I can. When she was first diagnosed, I thought I knew about scoliosis because I had it, but I've learned so much more since she started to progress and I've had to look at alternative treatments. I appreciate your opinions.

I wasn't quite clear. I do think the reduction was due to the brace and not the natural history of some JIS curves self correcting. I think 40* is probably outside the range where JIS curves self correct but I don't know that.

What I was trying to get at is that I think any brace would have produced that reduction in that JIS case and that no brace could have produced that reduction in any AIS case.

The issue is reduction due to JIS + (any) brace versus no reduction in AIS + (any) brace.

That suggestion is in line with the data in hand as far as I know.

mariaf
05-24-2012, 05:20 PM
I agree with Sharon that most of the time, if a curve responds favorably to one type of brace, it would in all likelihood respond similarly to any well-made brace. To take that a step further, the same is also true, IMHO, to some extent with regard to bracing vs. VBS - meaning that curves that respond well to bracing will respond well to VBS; whereas a rigid, aggressive curve will likely respond to neither. I am not saying this is true in all cases - and this is of course, just my opinion - but I'm basing it on the dozens (maybe hundreds) of children I have followed over the past several years on various scoli sites and elsewhere.

Pooka1
05-24-2012, 05:59 PM
Yes I agree with Maria.

The Cheneau and Luke Stikeleather, and the Cheneau's alter ego, the LA Brace, have been around long enough to have changed the landscape if they were changing the landscape. But we don't obtain that result. Claims aside, there remains nothing in the literature that I can find to suggest these braces and this orthotist have a better track record than any other brace. Stikeleather seems to have an almost religious following all based on faith without evidence. The orthotist I worked with claimed only 2 patients of about 300 went on to need surgery. Maybe all orthotists are equally out of the data loop.

The Katz et al. (2010) article really makes clear that all of these things that appear to correlate with bracing success are just noise. I think the individual outcomes in Katz and every other article could be largely predicted ahead of time for at least 75% of the kids just by knowing the scoliosis.

The time has passed where any brace or PT study is publishable without having the Scoliscores. There is enough nonsense in that literature to be larding it up with more.