How tight should a night time brace be?

[Pooka1]

You're putting a teen on the operating table to keep a 30 or 40 or 50 year old off the operating table.

I have NO CLUE what you are talking about here. Teens who are surgical are surgical NOW for a reason NOW, not a reason 15, 25, or 35 years down the road.

The benefits are IMMEDIATE. How many of these kids would be carrying on with their normal lives absent their surgery? Neither of my kids I'll tell you that.

Even if they don't become debilitated or a recluse, people with T curves are potentially playing Russian roulette with their lumbars absent treatment. Talk about odds. I would go to pretty long odds if it means potentially saving my kid's lumbar.

Surgery is ethical for a reason. It is NOT a choice for kids in range who can tolerate it. It clearly benefits them.

[hdugger]

Understanding the unknowns of surgery helps to inform decisions at every stage of curve progression - way before the surgical decision is reached.

So, once you understand that the long-term risks of the current surgery are unknown, then you use that to decide what you're going to do with a kid who has not only a 30 degree curve which can be braced but a 20 degree curve which appear to respond to PT.

Does it make sense to try out no- or low-risk exercise at 20 degrees, even if the research is pretty light, in order to avoid the long term risks of surgery, for which there's no research at all? I think clearly laying out *all* the risks makes it easier for other parents to reach their own conclusions about that. Should they, as you suggest, wait until 10,000 or 100,000 kids have been run through some randomized study for torso rotation before they even look at it? Or can they give it a try themselves, seeing that it doesn't appear to have any downside, in order to avoid the known and unknown risks of surgery? Doing nothing has known risks - with a high risk kid, the risk is that 50% of them will advance to surgery and an unknown future.

I'm not wild about the expensive PT programs - I think they'd have to prove their worth to be offered as reasonable alternatives to waiting and watching. But side shift and torso rotation? Extremely low cost and simple? Small studies show promise? Why not try them? Is it more rational just to sit and wait until the operating table becomes the only available treatment?

For the cost programs, I found out recently that Dr. Mehta had some good things to say about the ISICO group in Italy. Travel expenses make that prohibitive for US patients, but for someone in Europe? It might well make sense for them.

But they can't make those decisions unless we're very clear about all of the risks associated with every treatment choice.

[Pooka1]

So, once you understand that the long-term risks of the current surgery are unknown, then you use that to decide what you're going to do with a kid who has not only a 30 degree curve which can be braced but a 20 degree curve which appear to respond to PT.

Long term risks are irrelevant if you aren't addressing short-term risks.

Surgery addresses short-term risks so that there CAN be an opportunity to address long term risks. Absent surgery, you aren't cutting your losses. Rather the losses will only grow and magnify.

Fusion surgery is MAJOR. Therefore there must be some MAJOR ethical reason to do it. What do you think that reason is? Just curious.

Why you can't see this I can't figure.

In re conservative methods, I think kids who want to try it should. My kid wanted to try the brace even after I got into the literature on that. So why would I stop her if it is her decision?

I don't think kids should be doing this stuff SOLELY on the basis that their parents don't understand the state of the literature which is what we see most of the time. It is no coincidence that two of the players here who turned away from bracing both are trained researchers albeit not in a medical field. But critical thinking is critical thinking.

[hdugger]

My biggest concern is for those kids with lumbar curves. It's possible (but unknown) that a kid fused in the thoracic spine won't encounter any serious problems in adulthood. I'm guardedly hopeful about those kids (although the problems I'm seeing above the curve still concern me). But what about teens with lumbar curves? I know we addressed the problems they had in adulthood with the previous surgical methods, but, even with current surgical methods, how well do things turn out for kids with fused lumbar curves? Is the surgery they get as a teen the last surgery they're going to need? Or are you looking at a reasonable chance of two surgeries for kids with lumbar curves - one into the lumbar spine as a teen, and another down lower or into the pelvis at 40 or 50?

I haven't had the sense that parents really understand the long-term picture for these kids with lumbar curves. My sense is that doctors cover the immediate risks but aren't as good long-term. So, parents hear "we're prescribing a brace to reduce the risk of advancing to surgery within the next few years," but they don't hear "we're prescribing a brace to reduce the risk of *two* surgeries - one as a teen and a second as an adult." I'm not faulting doctors for this - I think it's hard to give a clear picture, and you don't really want to confuse parents with lots of long-term risks. But I do note that parents don't really seem to fully grasp the long-term risks with the curves, and the reason why doctors want to keep the curve as small as possible.

[Pooka1]

Lumbars are not as prevalent as thoracic curves luckily. They might be a different genetic consequence. IS seems like a mixed bag.

Nobody has a good answer for lumbar curves. Lumbar curves are one of the stronger arguments for why there is no benevolent deity who cares about innocent kids. The only small mercy is that they tend not to progress as much as other types of curves, at least during growth.

I have to assume surgeons fuse into the lumbar on kids because it is known that it buys them time. If it didn't then I doubt they would be doing it. That is NOT to be confused with having "the" answer. Cutting losses is the best you can do when there are no real answers. So you cut your losses.

The countdown situation has been elucidated by Boachie and others. The situation is well known among surgeons at least but I would agree, based on testimonials here, that it doesn't seem to come up with parents. Or if it does it is not highlighted because who knows how long the countdown will be on any given kid.

But again, it simply must be that two surgeries buys more time than no surgery in the long run or nobody would be fusing into the lumbar on any kid. When normal is off the table, all you can do is buy time. Life is unfair.

[Pooka1]

It is no coincidence that two of the players here who turned away from bracing both are trained researchers albeit not in a medical field. But critical thinking is critical thinking.

Of course we could have been wrong. Researchers are wrong all the time. All we have is the flawed literature and this isn't our field.

[hdugger]

This is an old article (1988), so I wouldn't pay much attention to the risks they quote of surgery, but it does give a really clear picture of exactly why we do surgery in teens and adults.

http://www.ncbi.nlm.nih.gov/pmc/arti...328786/?page=1

In the adolescent the accepted indications for surgery are curve progression despite bracing or large curve magnitude. A curve too large for bracing, generally over 4O - 45 degrees, or one that has a high probability of progression. is an indication for surgical treatment. Surgical indications in the adolescents are generally for “prophylactic” reasons. Surgery is predicated on the fact that if the curve progresses the patient will have future problems related to pulmonary function, pain or psychosocial effects.

In the adu]t with AIS, surgery is most commonly indicated for pain unresponsive to nonoperative treatment and/or for pulmonary symptoms. In these cases, the surgical indication is intended to be “therapeutic”. In the adult, surgery is also indicated for curve progression because of the possibility that this will lead to pain, increasing cosmetic deformity and psychosocial impairment. Under these circumstances surgery in the adult is intended to be “prophylactic”.

[hdugger]

As an example of the unknown risks of the current surgery is the PJK (basically, curves that develop immediately outside of the fusion area) that's been increasingly seen above the fusion. Harrington rods had an unforseen consequence in the lumbar spine (flatback frequently leading to revision surgery), but they largely spared kids with thoracic fusions.

But, something in the current surgery - I don't know if it's the change in materials or the change in methods - is increasing the risk of problems above the fusion in the thoracic spine. In the worst of these cases, a patient who went in with a curve in their thoracic spine ends up a few years down the road with a curve in their cervical spine, where doctors are very hesitant to do any intervention.

So far, the number of patients with these problems has been reasonably small - certainly more than we saw with older materials/techniques, but not yet an unacceptable risk. But, we haven't seen yet how these small changes above the fusion play out 30 years down the road. Do they continue to be stable? Or will some percentage of them start to progress again as the spine weakens in late adulthood, the same way that we now see weakening and progression below the fusion 20 or 30 years down the road? And doctors still don't seem to have a good handle on why it's happening or who is at risk. I've seen wildly conflicting research about the cause and which patients are at risk - it's clear that it *is* happening in larger number, but no one seems to know exactly what it is that's increasing the risk.

[hdugger]

Teens who are surgical are surgical NOW for a reason NOW, not a reason 15, 25, or 35 years down the road.

No, that's not the case. There is no *medical* reason to fuse a teen as a teen. Look at what I quoted about the difference between the reasons for performing teen vs. adult surgery. Surgery is teens is " generally for “prophylactic” reasons" It's to keep down the risk of future problems. They're not having medical problems right now, but they're at higher risk of having these problems down the road because of the size of their curves at maturity.

Adults have surgery because of current problems - pain, lung, etc - but not teens.

I trust your ability to evalute your own kids, but there are lots of kids with 40 degree curves or larger who are finishing high school and going on to college. They're getting married and having kids. They're holding down jobs. Surgey isn't making those things possible - they're possible with or without surgery. The word from long term studies, even before surgery became prevelant, is that these kids go on to lead normal lives no matter what you do or don't do. You don't want a curve so big in the thoracic spine that it affects breathing, but you're talking about a pretty big curve before that happens. With that exception, there's no *medical* urgency to fusing these kids. We do it, as the study states, for prophylatic reasons - to keep problems from occuring down the road. We're *choosing* to deal with it now. There may be lots of good reasons to make that choice, but it is certainly a choice.

[hdugger]

trained researchers . . . critical thinking

I'm a trained researcher in the medical field (albeit a lapsed one) and I did not reach the same conclusion that you and CD did about bracing. I had a pretty good sense that it worked even before the BrAIST study came out.

I think the reason why I could predict the results of the BrAIST study while you and CD could not (no insult to either of you - it's just not your field) is that trained scientists are looking at medical research through the filter of research in other areas. In fact, I think that training in a hard science makes it *harder* not easier to make sense of medical research.

If you come from another field, you expect to see things nailed down. In medical research, especially in scoliosis, they just aren't. But, if you've seen a lot of medical research, you can kind of read the signs and see where the research is tending.

Here's the things that tipped me off to bracing's effectiveness:

* The results were not all over the map. So, if you had measured something that really didn't make any difference (like you eternal ice cream example), you would have seen the full range of results. In some studies, bracing would improve the odds, in some it would make no difference, and, most importantly, in some *it would make the odds worse.* That's just what you'd expect if the thing didn't matter at all - mostly it would make no difference, and then you'd see a scattering of better results with bracing and a scattering of worse results with bracing. Those "worse results" just never happened. And the "no difference" results didn't happen that often. Mostly, bracing reduced the need for surgery. You simply would not see those kinds of results consistently if you were looking at something that didn't make a difference.

* There was a dose response. Again, you could have a single study where kids eating ice cream reduced their risk of surgery. But you would not have a series of studies where kids eating more ice cream had less and less risk the more and more ice cream they ate. Dose response is a big tip off that something is likely effective.

* The Mayo Clinic report was a big deal, to me, even though it wasn't randomized. The fact that they used to have a bunch of kids that went on to surgery, then they changed their protocol and *no one* went on to surgery was a huge clue. As an epidemiologist, that's the kind of evidence we mostly see. We're often not in a position to do a study, so we look at what happens when their are major changes in the environment.

* One of the Swedish studies (can't remember which one) also had something really interesting where one guy was bracing kids who almost never went on to surgery, over years and years, and another person was bracing kids who often went on to surgery. Again, that points to something in the protocol that really changes the odds.

Everything that I saw, even before the randomized results came in, screamed of an effective method in search of a protocol. When the protocol was followed, the results were good, when it wasn't followed, the results weren't as good. When you mixed kids with different protocols in one study, it would dilute the measured effectiveness, and when you used just the best protocol it would surface the real effectiveness. The results were always positive, but they were varying degrees of positive.

Again, not to fault you and CD - I realize you're using your best experience to make sense of a confusing field and give your kids the best advice. But, as a hard scientist, you're really hampered in this field. if you're waiting for a "definitive" study in medicine, you'll go to your grave before it shows up. Medicine rarely has that kind of thing. Once you really realize that, then you start to look for glimmers in the research that point the way. Those glimmers clearly suggested to me how the BrAIST study would turn out.

[hdugger]

I wanted to add that CD's case wouldn't have changed no matter what the research said or whether he braced or not. His daughter had the same thing happen as happened to my son - a sudden progression in a just mature spine. You just cannot predict the unpredictable, and nobody would recommend a brace for a kid who had stopped growing. 99.9% of the time that's good advice, and if you have a rare case like CD's or my kid, you just accept that you got dealt a odd hand. Fortunately, our kids are fine - one with surgery and one not - both in college and doing fine.

[susancook]

Doctors/Surgeons treat Patients, not X-rays, lab tests, MRIs, CT scans.
Susan

[flerc]

Hdduger, I see you continue explaining obvius things to Pooka1. Of course I suppose you do it in order to avoid the confusion she is generating saying what she is saying, mainly in order to hide the important facts the braist study showed, but certainly I believe it generates much more confusion to see an undoubtly very much rational rational woman as you are, discussing as you are discussing with Pooka1.. people (specially new parents) even may believe she is a scientist as she is saying and of course it would be the worst that may happen.

[hdugger]

very much rational rational woman as you are

My son would dispute the notion that I am rational rational

I do the best I can with what I have, and I try to be fair minded.

[flerc]

Wihout any doubt and really nobody may say you that you are not doing something very much reasonable. Is all we can do, to take reasonable decisions. We cannot know if it would be best decision, just only we may hope that.