The ethics of bracing (and PT) with a Scoliscore <41

[LindaRacine]

I agree. I think the issue is that surgeons who treat mostly kids, usually don't see their patients after they hit adulthood, thus they end up with a rather slanted view of outcomes.

[jrnyc]

i think it is a really important point..

life doesn't END at age 18, it is just beginning, in many ways!

why wouldn't pediatricians pass their patients on to "adult" type doctors?
in other words, tell the parents to have their child, soon to be an adult, followed closely as an adult, with an orthopedic surgeon or orthopedic doctor who specializes in scoli...?!!

i am listening for that in these posts, but not hearing it...?!

sounds...a little...short sighted...almost irresponsible...to me!
kinda like tunnel vision..."well, he/she's not my patient anymore...i'm off the hook as the doctor"

no?

jess

[Pooka1]

No, I'm suggesting exactly that. Pediatric orthopedic surgeons seem to be treating a specific disease which I'll call "progressing to surgery before age 18." Everything they do and everything they say is focussed solely on that disorder. The scolioscore is a perfect example of that myopia. What does it predict? Oh, it predicts whether or not someone will progress to surgery by 18.

Unless we've entered aggressively soylent green world where people are eaten when they reach their 18th birthday, I cannot figure out the point of that emphasis (or of the test at all). Really, what the hell do I care whether my kid requires surgery at 25 vs. 18. Or at 40 vs. 18. Or whether he never needs surgery, but is sidelined by pain. He's still my kid, no matter how big he gets.

If the real burden of the disease (pain or surgery in adulthood) is 30 degrees at maturity, then anything that can't predict who will exceed that cutoff is of no use whatsoever.

Okay you appear to be disagreeing that pediatric orthopedics should be a field. Linda and I have briefly discussed this general topic of talking kids to a pediatric guy versus a guy who does everyone. I see Linda chimed in. I think there are pros and cons. There are plenty of folks here who brought their kids to adult orthopedic surgeons.

But I'm sorry to keep bringing you back to the bottom line but unless you are saying that the guys who treat kids and adults have effective conservative treatments than the pediatric guys don't have then I don't see how it could possibly matter.

Thought question not necessarily related to the rest of this post: If your son was told to wear a Milwaukee brace with a neck collar for 23 hours a day for his high T curve for 3-4 years, would he have done so? Would you have been asking him to do so?

I just think this aspect of blood from a stone is always "in the air" in threads like this and is not fully acknowledged.

[Pooka1]

So just to be clear, I hear you complaining that were weren't told X, Y, and Z by the orthopedic guys you saw early on and you are generalizing that to the entire population of pediatric orthopedic surgeons.

I'm going to grant all that is true for the moment.

What you still haven't come even close to establishing is whether or not it matters what you were told versus what there is out there in the way of conservative treatments.

Are you saying that adult surgeons had something more to offer your son when he was younger and that you missed the boat?

While I might agree that the pediatric guys and the adult guys might (might!) have different perspectives, I think the range of opinions within each group is likely larger than the differences between the two groups.

Is there any evidence whatsoever that anyone missed any boat in going to a pediatric guy versus an adult guy or vice-versa in terms of outcome? What is it?

[hdugger]

Thought question not necessarily related to the rest of this post: If your son was told to wear a Milwaukee brace with a neck collar for 23 hours a day for his high T curve for 3-4 years, would he have done so? Would you have been asking him to do so?

We actually asked for a brace, by the second visit. Whether or not my son would have worn it, I don't know.

Our doctors' response (non-scoliosis specialist) was all about the discomfort of the brace and not at all about its effectiveness. Because my son was almost 18 at that point with a 47 degree curve, we didn't press. We realized that that ship had already sailed.

As for conservative treatment, I'm not certain that we know very much about keeping curves under 30 degrees. The research interest appears to be in the surgical trigger. But, if the trigger is actually much lower, then McIntire and people like him have a huge opportunity to try and nail down how to keep small curves small.

I also wonder what the point is in emphasizing conservative treatment between 30 and 50 degrees. If the battle is lost at 30, then maybe *less* energy should spent after 30 degrees is reached. But, I'm only about 30 minutes into that thought - I might well change my mind.

The scolioscore, of course, is just going to make all of this much harder, since it puts the emphasis on *not* treating unless the 50 degree trigger is likely to be reached, instead of focussing on keeping the under 30 crowd under 30.

[hdugger]

why wouldn't pediatricians pass their patients on to "adult" type doctors?
in other words, tell the parents to have their child, soon to be an adult, followed closely as an adult, with an orthopedic surgeon or orthopedic doctor who specializes in scoli...?!!

It's possible that's happening with the SRS pediatric orthos when the have kids who are in the high 40s, but I don't think it happens nearly enough with kids in the 30s. I don't think most parents realize that 30 is an important milestone - they're all focussed on staying under 50.

I realize we're having a very thoracic-centered discussion. The 30 vs. 50 cutoff is all about thoracic curves. With lumbar curves, the numbers are lower. Once you reach 30, you're likely to progress, so probably those curves have to stay below 20 in order to be stable through adulthood.

[leahdragonfly]

[QUOTE=hdugger;114558]No, I'm suggesting exactly that. Pediatric orthopedic surgeons seem to be treating a specific disease which I'll call "progressing to surgery before age 18." Everything they do and everything they say is focussed solely on that disorder. The scolioscore is a perfect example of that myopia. What does it predict? Oh, it predicts whether or not someone will progress to surgery by 18. <snip>

I wanted to add my personal opinion of the above comment. Whatever one believes about bracing, all/most orthopedic surgeons agree that bracing after skeletal maturity is achieved will have no effect at all. So, I think the only thing they have to offer is bracing before skeletal maturity, where the vast majority of progression occurs. This is progression that is related to growth. Once growth is complete, I believe many of the cases that progress in middle age (such as mine) are related to degeneration, which is distinctly different than progression related to growth. Degeneration is more of a mechanical wearing out of the spine due probably to uneven loading. I am guessing that about the only thing that may help with pain from degeneration is PT and exercise (things like swimming, pilates etc that exercise the whole body).

The only non-surgical treatment right now that the pediatric orthopedists can offer for progression related to growth is bracing (until the curve becomes surgical). So, that is what they have to offer and therefore that is what they focus on.

I was braced as a young teen for a double curve, lumbar and thoracic 32 and 33 degrees. If I hadn't been braced it seems very possible that I would have ended up with a harrington rod then (this was in 1980). I HATED my brace, and yes I just underwent a huge fusion surgery (at age 43), BUT I am glad I didn't have a harrington rod for the last 30 years. So in my mind it may not have been possible to avoid surgery over my lifetime, but to postpone surgery for 30 years, I'd say that's better than the alternative. Just my personal opinion. Of course we all want the crystal ball for our children...

Gayle

[Pooka1]

I also wonder what the point is in emphasizing conservative treatment between 30 and 50 degrees. If the battle is lost at 30, then maybe *less* energy should spent after 30 degrees is reached. But, I'm only about 30 minutes into that thought - I might well change my mind.

I think it is inexact to say the battle is lost once the 30* threshhold is reached. There is likely some percentage, who knows how high, of folks over 30* who never need fusion for either pain or progression. I am guessing it is fairly high because of the focus on 50* or so as the upper limit for conservative treatment.

It would be grand to know the lifetime outcome in terms of progression and pain for people at 30* vice 35* vice 40* vice 45*.

Maybe there is some pub or combination of pubs that can be used to estimate this.

It would also be just ducky to see the Scoliscore data of the number of patients at each score and what their curves were at maturity. It could be most of the patients with a score of <41 were also <30* at maturity. And I am not implying there is necessarily a tight correlation between the range of low scores and the curve at maturity. I am just asking about the group as a whole.

It could be the case that relatively few people actually have a curve> 30* at maturity. Our impression is likely totally skewed by the attention the curves 30*<x<50* receive as we go around and around about the evidence cases for various conservative treatments. What I'm saying is that Scoliscore might be totally consistent with what is already known, to wit, most kids need no treatment becsause their curves are too small and will stay that way as a consequence of natural history.

Now that doesn't help with the question of efficacy of conservative treatments for kids in the treatment window. But any time Scoliscore independently corroborates a previously held claim, it strengthens both.

[hdugger]

I was braced as a young teen for a double curve, lumbar and thoracic 32 and 33 degrees. If I hadn't been braced it seems very possible that I would have ended up with a harrington rod then (this was in 1980). I HATED my brace, and yes I just underwent a huge fusion surgery (at age 43), BUT I am glad I didn't have a harrington rod for the last 30 years. So in my mind it may not have been possible to avoid surgery over my lifetime, but to postpone surgery for 30 years, I'd say that's better than the alternative. Just my personal opinion. Of course we all want the crystal ball for our children...

I think postponing surgery for 30 years is a success story - we're likewise trying to keep our kid off the operating table for as long as he can stay off of it.

My complaint with pediatric surgeons is that that outcome (delaying surgery) isn't one of the stated endpoints. The endpoints, as far as I know, are all about having surgery or not by age 18, and then everything fades to black. I'd like to see a broader conversation take place, which includes both the 30 degree cutoff and a clearer picture of what life with scoliosis is like.

For example, if you have a child with a 40 degree curve in a brace with some growth remaining, the conversation is not how to keep them out of surgery, but whether to delay it or not by continuing to brace them. As far as I know, *that* conversation never happens with pediatric surgeons. I'm still puzzled as to why not.

[hdugger]

I think it is inexact to say the battle is lost once the 30* threshhold is reached. There is likely some percentage, who knows how high, of folks over 30* who never need fusion for either pain or progression. I am guessing it is fairly high because of the focus on 50* or so as the upper limit for conservative treatment.

I would broaden that to pain *or* fusion. There's lots of people out there who have pain but will never have surgery. For my son, and I suspect for all of our kids, what we're trying to do is give them the best life they can have, and not just keep them off the operating table. If he's in pain and has limited mobility but doesn't have surgery, that's not really a success story.

yes to all the rest. We really need to get the focus off 50 degrees by 18 and look at the full range of curves over a lifetime. Without that information, we're just steering in the dark.

[mamandcrm]

Is there a link to the final published Scoliscore study somewhere on the forum or is it pay/subscription only?

[hdugger]

I don't have that, but there's a ton of information in this paper - http://66.132.176.228/portals/12/res...echMono_12.pdf - on their site.

[mamandcrm]

Thanks, I'll look at that. I found the pubmed abstract but it's very brief.

On a different note, the bracing question aside, I personally find a lot of value in the scoliscore simply from the perspective of minimizing radiation children will receive. If a 9 year old gets a low score, whether or not that child ends up in a brace, I would think that the number of x-rays over his/her childhood could be reduced significantly. Other than checking for brace correction, the main purpose of the x-rays is to see if the child is progressing into surgical territory, isn't it?

It also was interesting to read the newspaper articles talking about the study. Almost all interview and quote treating doctors. The doctors pretty much all refer to the test as nice addition to the toolbox but not something they would rely on exclusively. One was quoted as saying that he would brace and wouldn't bother giving the test to a child who comes in with a 35* curve because he "already knows she's progressive". 35* is well below surgical so that seems to indicate some (initial, at least) distrust of the test. I'm sure most don't want to be the doctor who recommended no bracing based on the scoliscore, and then the child ends up in surgery. I know, I know, the makers say the test is 100% predictive, but what if, you know, they're wrong?

And why does this not work for juveniles, or did they just not look at that at all (so what else is new)?

[hdugger]

I don't think they looked at juveniles (or adults). I'm guessing they did some preliminary work and found too much noise in the juvenile population, but that's a total guess.

The test also doesn't work once a curve is over (I think) 30 degrees, so it wouldn't be given to someone with a 35 degree curve. And it's not recommended, even in the literature, to use as the sole diagnostic criteria.

Yes, on the xrays. I'd like to see a lot fewer xrays and a lot more PT in the small curve crowd. Maybe (and I say this while not believing at all that it will happen) those children with a low scolioscore who are under 30 degrees ought to be released from doctor care and sent to PT instead.

[mamandcrm]

I read in one place that the test criteria had been expanded to any child (with AIS and an immature spine) with a curve under 40*. It was from August I think. But perhaps that was not correct, or was later changed. It would seem to make sense though. If the point is that the low-scoring child will stay sub-surgical while their spine is growing, then I don't understand why would it matter at what degree point they get the test.