How tight should a night time brace be?

[Pooka1]

And yet, long terms studies on bracing show just that - braced kids can be stable 20 years out with no serious issues.

How many of those patients were braced needlessly? How many were lumbars?

It is naive to take this at face value and gloss over details that are known to be relevant. The details have been shown to matter.

You mention dose response. Are there more than two studies that purport to show a dose-response? Are you familiar with the criticism of one of them, Katz et al. (2010)

Is one of them BrAIST which in only to the point of "maturity" where maturity is defined as having no more than 25% of growth remaining and where "success" includes a 49* curve?

The details matter. You can't gloss over them. The ending curves are conspicuous by their absence.

Your declarations of victory remind me of all the previous declarations of victory. Do you think those were correct also? If so then why was BrAIST conducted?

[hdugger]

Does that make sense to you?

it's not a matter of making sense or not making sense. It's just a statement of the facts.

I believe pedicle screws came into common usage all over the spine sometime in the mid 90s. That would make even the earliest of these cases in their late 20s or early 30s today, and the bulk of them are considerably younger. That's just too short a window to offer up a lifetime guarantee to anyone.

And, again, that's just the technology. When did doctors start over-correcting? How old is the oldest kid who started at 50 degrees and got down below 20 degrees? Aren't they just in their 20s or younger?

So, the data just is not in. You need a bunch of kids in their 40s or 50s before you can start to breath a little easier. Until then, we all remain *hopeful* and *optimistic* but we don't actually know anything. I trust that these surgeons are making a very educated guess, but I'd be cautious to repeat that it is just a guess.


[Note - 12/29 - On locating the Boachie quote, he does not go on the record as saying that thoracic patients can have "one-stop shopping (basically, have no future problems for the rest of his life). What he does say is that patients with fusions that go lower are guaranteed to have problems 20 to 25 years later, while those that stop higher can avoid such guaranteed problems provided certain other conditions are met. Here is Boachie's quote - read it for yourself "If you fuse a 13-year-old to L4, 20 to 25 years later, at the most, he or she is going to have problems at L4-5 and L5-S1 levels. But if you fuse them to L1 or T12, they can do very well for the rest of their lives, provided the remaining lumbar spine is properly aligned and has not shifted." Since I only found the actual quote at the end of the discussion about one-stop shopping, I am going back to add this note to all of my posts on the topic.]

[Pooka1]

it's not a matter of making sense or not making sense. It's just a statement of the facts.

I believe pedicle screws came into common usage all over the spine sometime in the mid 90s. That would make even the earliest of these cases in their late 20s or early 30s today, and the bulk of them are considerably younger. That's just too short a window to offer up a lifetime guarantee to anyone.

And, again, that's just the technology. When did doctors start over-correcting? How old is the oldest kid who started at 50 degrees and got down below 20 degrees? Aren't they just in their 20s or younger?

So, the data just is not in. You need a bunch of kids in their 40s or 50s before you can start to breath a little easier. Until then, we all remain *hopeful* and *optimistic* but we don't actually know anything. I trust that these surgeons are making a very educated guess, but I'd be cautious to repeat that it is just a guess.

Any reason you are deliberately ignoring all the H-rod T fusions?

[Pooka1]

it's not a matter of making sense or not making sense.

I can see that you believe that. I think you actually as a matter of fact DO think surgeons ARE guessing completely in the dark.

I have posted long term studies.

[hdugger]

How many . . . It is naive . . . gloss over details . . . details have been shown to matter

etc. etc etc

Would it be possible for you to argue your position without the stream of casual insults? I suspect that if casually insulting people with differing views was useful to examining evidence, our scientific journals would be full of it. "Dr and so naively states such and such and glosses over these details." In general, I find that where people are trying to think clearly they avoid that sort of thing, but maybe you're reading different journal than I am, perhaps "pugilistic popular science" or something.

Anyway, once I get past all that and dig down to your point . . .

We've discussed the details in detail, including the best estimate on over treatment. I'd mention that VBS used on the same pool of patients has exactly the same percentage over treatment. It's a known risk of any treatment on smallish curves. The reason people take this risk is because it's worth it to them to avoid the known and unknown risks of surgery.

As to the research, it's not about calling victory, it's about basing decisions on the best information available. BrAIST is the best quality evidence we have at this time, because it is randomized. That's a rare thing in medicine. None of the research is perfect, but I'd certainly at least quote odds from the best information that we have available at this time. If better quality research shows up later, I'll use that instead. Since that study just completed, I would, as I have done, pull the odds of *future* progression to surgery from other studies. I don't see any clarity gained from imagining data, and asking what people think about that imagined data.

If you're going to ignore the best quality research we have available, what are you going to rely on instead? What are the other choices? Citing blog posts? Guessing based on the cases you see in a forum? I just don't see what the better choice is.

[3sisters]

Thanks, Emily. That's helpful.

is there a reason that they favor the night-time brace? I'd understood that wearing a brace a bit longer (more like 13 hours) yielded a better result.

I have not heard specifically why, but my thought would be that since primarily thoracic and sometimes double curves are chosen for tethering, the compensatory curve (lumbar) is expected to go down as the thoracic does. o/w, the patient wouldn't have met the tethering criteria. I get the impression that it is a sort of precaution when there is still a lot of growth left... to make sure a compensatory doesn't change. (?)

The doctors are being very particular about who they will take for tetheirng in these early stages, to help ensure success of a relatively new technique. I think that, too, is why full time braces are generally not being used- the tethering patients do not generally have major lumbar curves.

Of course I am not the 'expert' on this, but these are some of my 'educated guesses' from the literature and talk with surgeons.

[hdugger]

"it's not a matter of making sense or not making sense."
"I can see that you believe that."

Zing!

"you . . do think"

I think what I said I think, and for the reasons I stated for reaching that conclusion. You are, of course, always welcome to think I've said something different, to think I'm a moron, or anything else you please. But my explanation of my thought process is a pretty clear representation of my thought process.

[Note - 12/29 - On locating the Boachie quote, he does not go on the record as saying that thoracic patients can have "one-stop shopping (basically, have no future problems for the rest of his life). What he does say is that patients with fusions that go lower are guaranteed to have problems 20 to 25 years later, while those that stop higher can avoid such guaranteed problems provided certain other conditions are met. Here is Boachie's quote - read it for yourself "If you fuse a 13-year-old to L4, 20 to 25 years later, at the most, he or she is going to have problems at L4-5 and L5-S1 levels. But if you fuse them to L1 or T12, they can do very well for the rest of their lives, provided the remaining lumbar spine is properly aligned and has not shifted." Since I only found the actual quote at the end of the discussion about one-stop shopping, I am going back to add this note to all of my posts on the topic.]

[hdugger]

the tethering patients do not generally have major lumbar curves.

Ah, thanks. That makes perfect sense.

You're in good company - none of us are experts. We're just trying to muddle our way through the information.

[Pooka1]

"it's not a matter of making sense or not making sense."
"I can see that you believe that."

Zing!

"you . . do think"

I think what I said I think, and for the reasons I stated for reaching that conclusion. You are, of course, always welcome to think I've said something different, to think I'm a moron, or anything else you please. But my explanation of my thought process is a pretty clear representation of my thought process.

Ever since you denied my comments were similar to D. McIntire's abut BrAIST I have written you off as not being a straight shooter. Sorry. Have fun.

[hdugger]

"Would it be possible for you to argue your position without the stream of casual insults?"
"written you off as not being a straight shooter."

I'll take that as a no.

[flerc]

my comments were similar to D. McIntire's abut BrAIST

I'm trying to imagine D. McIntire saying/suggesting that Braist study didn't show nothing much significant yet, not possible to get important conclusions without raw data and many of your other claims. But he is a real scientist, so I cannot.

[hdugger]

I have a (young adult) son who is in surgical range but without any current symptoms which would indicate a need for surgery. But, I assume he'll be on the surgical table eventually so I pay attention to the long-term research.

About a year ago I posted a very positive report about the results 10 years out, and opined that it seemed like it was good news for these kids. Linda cautioned that 10 years wasn't a long enough window - that Harrington rod patients looked equally good this soon out - and that you'd need to see older patients farther out. That was eye-opening, for me, because I had thought at that point that the jury was likely in. Unless something has changed in the research in the past year, I'm still (now) assuming that the jury is out.

The issue with surgical procedures - especially when you're changing everything at the same time (type of rods, types of attachment, amount of correction, other materials inserted and so on and so on) - is that you just have no way of predicting the unpredictable. We've been bracing kids forever, and we know how that plays out. When things go wrong, they go wrong in entirely predictable ways - the curve progresses, or it goes down into their lumbar spine, or whaever it is that we've seen through the entire history of scoliosis.

With medical devices and new surgical procedures, you just have nothing to base your prediction on. Rods straigtening the natural curve in the lower back just isn't a regular part of natural scoliosis history - it's a specific response to a specific hardware.

I don't think my son's unfused spine is going to hold up long enough for these results to all come in. But I accept that, in choosing surgery, I will be enrolling him in an experiment for which the long terms risks are unknown. Crappy thing to do to a parent who wants to keep their kid safe, but that's just the way it is.

[hdugger]

Any reason you are deliberately ignoring all the H-rod T fusions?

Calling out and putting aside the overly charged "deliberately ignoring" phrase. Still not clear what these little slings are adding to the clarity of the discussion. This, btw, is why I keep mentioning the heat in your posts. The *facts* aren't hot, but the distractions are.

That aside, I'm not sure I understand the question. I've mentioned a few times that Harrington rods affected lumbar spines while sparing thoracic spines, and I've also mentioned that something in the current techniques - pedicle screws? over correction? don't know - is affecting the area above the fusion in thoracic patients.

Do you mean using Harrington rods in thoracic patients for long-term odds? I don't see how one can do that - they're really very different devices. And thoracic patients weren't being overcorrected in the way we do now with Harrington rods, as far as I know. For patients using pedicle screws and overcorrection, they really need to know how pedicle screws and overcorrection play out. Telling them how some other device played out isn't going to help them.

[hdugger]

Basically, you can't tell lumbar patients that they can ignore all the old research about Harrington rod patients because we're using totally different devices now, while telling thoracic patients that they can use that data to predict their results because they're both basically the same device.

[hdugger]

About a year ago I posted a very positive report about the results 10 years out, and opined that it seemed like it was good news for these kids. Linda cautioned that 10 years wasn't a long enough window - that Harrington rod patients looked equally good this soon out - and that you'd need to see older patients farther out.

Well, dang, I can't find the one I posted, but here's another discussion about the same research study:

http://www.scoliosis.org/forum/showt...ooks-very-good

Quote from the research:

""We wanted to see how the patients were doing ten years down the road, specifically focusing on the part of the spine that didn’t have surgery. The standard belief was that the area of the spine just below the surgery would wear out, because of the increased stress that the surgery or the fusion would put on that part of the spine," Dr. Green said. "That isn’t what we found. We found that the area of the spine adjacent to the fusion was pretty healthy and didn’t show any major degeneration ten years later. While mild degenerative changes were noted in almost every patient, the severe changes that we were concerned that we might find were not there at all.

The investigators say the study results are good news for patients. Dr. Green also said the results may cause worry for investigators and companies who are trying to develop surgeries for scoliosis that do not involve fusing the spine. "There is a lot of research and investment being done looking for new technologies that do not use fusion," Dr. Green said. "This study would suggest that there is a challenge for those trying to do that because the patients doing fusion are doing well."

And Linda's response:

"This is no surprise to me, as the cohort was teenagers. It is absolutely true that teens generally have great outcomes. I think the question is, what happens 20 or 30 years later? I hope they'll continue to follow these patients. "

Hence, again, my caution that we need more years of data before reaching a conclusion.