Doctors wait too long to brace for JIS?

[concerned dad]

There is no evidence of a permanent reduction from bracing nor is it the claim.

Oh boy, here we go again


Presents under my tree is evidence for Santa Clause. It is not proof of Santa.

There is evidence for a permanent reduction from bracing. That evidence falls (well) short of proof.

I know you're going to say "what evidence".

I'd point to the 20 year data in the 2008 Daniellson paper and to the plethora of SpineCor papers. We may not like or believe the evidence, but it is evidence that people can and should weigh.

Heck, if one person posts here that they obtained a permanent reduction, then that IS evidence. (It is not proof.)

Since this thread is regarding JIS, I would say that a parent has to weigh the cost to the child against the potential benefit. A tough personal decision no doubt. Even tougher since there is no proof.

[mamandcrm]

In re the latter, if there are kids like that who are wearing a brace, we can't assume the brace is what held the curve rather than the child having a non-progressive curve.

No, but if that child (JIS) started out with a mild/moderate curve, progressed rapidly into the mid-thirties (the point at which the specialists say I believe that the curve will progress without question), then started reducing when she started wearing a full-time brace, I'd say that was a heck of a coincidence

[Pooka1]

Perhaps I'm not following along here but doesn't everyone's curve reduce, sometimes 100%, in brace?

[mamandcrm]

Oh boy, here we go again


Since this thread is regarding JIS, I would say that a parent has to weigh the cost to the child against the potential benefit. A tough personal decision no doubt. Even tougher since there is no proof.

Personally speaking only, I don't worry about the absence of proof (studies) for curve reduction using the device we are using. I don't think there are any JIS-specific studies and I just don't have time to wait for one. So I make my decisions based on the evidence I see in my daughter and in others in the practice where she is seen. I have no intention of keeping her in a full-time brace for 8 years. If and when the evidence shows me that she is not going to be where she needs to be in within the time frame we have set, then it's off to VBS

[mamandcrm]

Perhaps I'm not following along here but doesn't everyone's curve reduce, sometimes 100%, in brace?

I'm not talking about in-brace. I am talking about out of brace.

[Pooka1]

I'm not talking about in-brace. I am talking about out of brace.

Are you saying braces can permanently reduce a curve? I don't think they even claim that.

[mamandcrm]

Are you saying braces can permanently reduce a curve? I don't think they even claim that.

I think we've come full circle Back to my previous post "are you saying that no child anywhere at any time has ever experienced a reduction, etc., etc." No brace manufacturer makes that claim, and they shouldn't. But, yes, I believe that there are some kids out there who have attained some post-growth reduction from there original measurement after brace wear.

There are also intermediate non-permanent levels of success. Enough temporary reduction to reduce brace time to a more liveable level until growth is completed (to some extent this is what VBS offers to many as well), or at least until the child is old enough to have fusion.

Gotta go

[S4Sarah]

Would you be willing to wear a brace if 70% (or more) of kids who were braced shouldn't have been either because the curve progressed anyway or their curve would not have progressed anyway? That is the state of affairs as far as we can tell at this point.

What about if it is 80%? What about 90%?

Well only if the doctor is sure they need it. If you have like a 8 degree curve at age 15 most likely you'll be fine. But if you are like 9 and have a 20 curve it is probably best to do something before it gets worse. Oh and I'm not talking about the hard plastic braces. We have come a far way in Scoliosis treatments, to new surgical technologies to new therapies to new braces. There is now The Spinecor, the TriaC, and many others.

[Pooka1]

I think we've come full circle Back to my previous post "are you saying that no child anywhere at any time has ever experienced a reduction, etc., etc." No brace manufacturer makes that claim, and they shouldn't. But, yes, I believe that there are some kids out there who have attained some post-growth reduction from there original measurement after brace wear.

There are also intermediate non-permanent levels of success. Enough temporary reduction to reduce brace time to a more liveable level until growth is completed (to some extent this is what VBS offers to many as well), or at least until the child is old enough to have fusion.

Gotta go

I think there is so little known about JIS as you say that anything is possible. That is, I would not be as surprised to hear certain things in JIS as I would be with AIS because we do have at least some amount of research, such that it is, with AIS.

[mishwz]

Hi There,

My daughter was diagnosed in 2006 with 15* since then has progressed to 36* at T6 & T11 now there saying she has Thoracolumbar scoliosis and T12 L4 angle is 26* but yet no one is doing a thing except wait and see in 6ths...she is in alot of pain, but according to them scoliosis does not cause. Oh by the way although I was told she was done growing in Sept.08 she progressed 11*. Very fustrated can anyone offer suggestions.

Thanks,
Michelle

[mamandcrm]

Hi Michelle,

I would suggest you start a new thread with your post about your daughter as this particular one is relating to JIS (you might not get the readers you are looking for). I wish I had some advice to offer you but, other than seeking another opinion, I don't really.

[concerned dad]

Hi Michelle,
I'm sorry, but I am confused. It looks like her curve reduced from 36* to 26*. But you say she has since increased 11*. Maybe you could clarify that for us and also tell us how old she is.
I am sorry to hear she is experiencing pain. Have you sought a second opinion? Does your orthopedic doctor specialize in scoliosis? Is he a member of the SRS (scoliosis research society) - it doesnt guarantee competance but many think it increases your odds of getting someone who specializes in scoliosis as opposed to possibly a different focus of expertise.
I see MAMANDCRM just replied (and I'm too lazy to type this in response to your new thread ), so go ahead and start a new thread with the details and probably someone here can point you in the right direction.

[Pooka1]

Hopefully this post and any answers will be moved out of this thread on JIS and into the AIS section...

Hi There,

My daughter was diagnosed in 2006 with 15* since then has progressed to 36* at T6 & T11 now there saying she has Thoracolumbar scoliosis and T12 L4 angle is 26* but yet no one is doing a thing except wait and see in 6ths...

Are you saying she had a single curve in the thorax area that moved from 15* to 36* in the last three years and now there is a second curve in the thoracolumbar region that measures 26*?

If so, I think that is pretty common with the main structural curve getting worse that induces a compensatory curve lower down. You should ask if the second curve is structural or compensatory. If compensatory, it will disappear on its own if the structural curve is corrected.

How old is your daughter if I might ask?

she is in a lot of pain, but according to them scoliosis does not cause.

Our surgeon said the same thing. What I think your surgeon means is that because there are large curves that are painless, the curve alone is not causing the pain. That is, there is something else going on that may or may not be related or caused by the scoliosis that is causing the pain.

Oh by the way although I was told she was done growing in Sept.08 she progressed 11*. Very frustrated can anyone offer suggestions.

All but the smallest curves are expected to keep progressing although at a lower rate for the smaller curves. But when you say she progressed 11* in the last 8 months, that is well being the progression rate of a 36* curve in a mature spine. I think it indicate that she wasn't done growing. The ways to tell if a child is growing or mature don't always agree. Your surgeon may have used a method that wasn't accurate with your daughter. That's my guess.

Good luck.