How tight should a night time brace be?

[Pooka1]

It's not that it's not rational not to brace -

Three negatives?

[...] why you become emotionally involved [...]

I find it ironic that you think it is I who am emotional when you completely flamed out and deleted dozens if not hundreds of your posts because you realized you couldn't stand by them. This was after you issued a public plea to the forum management for support and there was nothing but crickets chirping in response.

You used to contribute A LOT. Then you went around the bend because you are EMOTIONALLY opposed to me personally for personal reasons. None of this has a damn thing to do with medicine.

[mariaf]

How many parents around the world may be influenced reading her so much confusing claims against every non surgical option, believing she is a scientist as she is saying? MY GOD!!!

I just want to say that if parents are making medical decisions based on what ANY of us here of the forum say - be it you, me, Pooka or anyone else - they are doing a disservice to their children. This is simply a forum where we share ideas and experiences. Nobody should be using the views posted here on bracing, surgery, torso rotation machines, PT, or anything else as the tools by which they make their treatment decisions. They can read it and weigh it all - but they should be talking to their doctor and the medical experts in the field.

[flerc]

If not, why are you emotionally involved in the decision?

If Pooka1 are really emotionally involved in a brace decision, then she must to see a doctor, but is absolutely unmoral what this Forum is allowing/promoting. It should to be shut down. How many parents around the world may be influenced reading her so much confusing claims against every non surgical option, believing she is a scientist as she is saying? MY GOD!!!

[hdugger]

It remains rational to not brace given all the caveats.

It's not that it's not rational not to brace - there are all kinds of reasons why a doctor might not prescribe a brace and all kinds of reasons why a parent, even after being prescribed a brace - might not use it. I've no quarrel with that. It reduces the odds of surgery, but that's not the only thing that has to be considered. Doctors and patients might also decide, just as rationally, against surgery. None of this is chemo - the treatment isn't going to cure and the patient isn't going to die without treatment. (Even chemo, btw, is not chemo - lots of people thrive without it, and lots of people die with it)

My specific question to you was why you become emotionally involved in that decision when you are neither the doctor, parent, or patient? Yes, obviously if a kid is struggling, you want to let them know that they might not progress, even without a brace. I totally get that on a support forum. You try to support them wherever you find them. I think Gayle's posts have been completely on target - you don't want the kid to be in pain, you don't want to ignore how they feel. That's all invaluable advice from someone who's been through it from both sides (as a parent as as a patient)

But you're in full engagement in a case where the kid is doing fine, and you're engaging in a way that is far more advocacy then informative. You're calling people "caviler," you're acting as if people who disagree are ill-intentioned, you're repeatedly quoting information that isn't supported by the literature ("bracing only delays surgery") as fact, while treating a randomized study as if it's just some anecdotal report from an unknown source. You're not clarifying the picture - you're creating a picture which, from anything that I've ever read, does not exist. And you're doing it in a very emotionally-charged way.

I am just genuinely puzzled. Is there some reason why you doubt these (now two) doctors of being able to do their job? That is, do you genuinely feel that this specific child ought to be out of a brace right this minute, and that her doctors are putting together a bad treatment plan? Do you suspect that she's somehow suffering greatly, even though all evidence is to the contrary. If not, why are you emotionally involved in the decision?

[Pooka1]

I think I just seem that way because the discussions on this forum lean so far into the anti-bracing direction that I'm forever arguing the other side of the issue just to try to present an unslanted picture.

You are fighting the data, not me, in that endeavor.

[hdugger]

The problem is your comments would be IDENTICAL if the kid was struggling in a 23 hour/day brace because you feel the research supports that.

No, my comments would not be the same. The research supports the idea of a dose response curve - more is better (up to about 13 hours when it seems to stop mattering.) For a theoretical child with a high-risk curve, 13 hours is better than 7 hours is better than 0 hours.

But, on a support forum, I never see a theoretical child. If a child is struggling at 23, or 13, or 7 hours, then 0 hours is better, no matter what the research says. The idea is for kids to end up feeling OK. If bracing isn't a struggle, then the path to feeling OK runs through a brace, because it has the best chance of keeping a curve small and pain free. But, if the brace itself is causing pain, then that's not a reasonable path for a kid to be in pain for years, and you start looking at some path that doesn't involve bracing.

I'm not wed to any of this stuff. It's not some victory for me to have a kid wearing a brace - I'm not actually all that pro-bracing. I think I just seem that way because the discussions on this forum lean so far into the anti-bracing direction that I'm forever arguing the other side of the issue just to try to present an unslanted picture. The only thing I'm in favor of is keeping small curves small, because those kids with curves that never progress do better then kids whose curves do progress. Surgery doesn't set those odds right, from anything that I've seen. Those kids whose curves go to 40 or 50 and have surgery are just not the same as those kids whose curves that never got above 15 or 25. Again, not from anything that I've read. So, if people can keep their curves small, then that's the best thing possible, IMO. But it's not the only thing that matters. The whole kid is the thing that matters.

My "in-and-out" posts are serious. I want to note that I'm absent from the discussion because I'm not reading, and not because I'm in agreement.

[flerc]

I believe an enough flexible spine may keep a reduction at least very close to 100%, sleeping on a hard mattress (specialy over the concave side of the curve) without the help of any brace, so I suppose night braces may be very useful in not very flexible spines and sleeping in a soft mattress.
Anyway a good point for night braces is that it seems that growth occurs while sleeping.

[Pooka1]

I'm about as confused about bracing as anyone can be but If I understand correctly the idea behind the night time(at least as it was explained to me) is to force the curve the opposite direction and by doing that the stronger muscles that are curving the spine atrophy(get weaker). And the reason for night time is because the back relaxes more during sleep so it is more susceptible to this bending the other direction.

Has that been shown? I haven't heard that.

My lay GUESS is that it puts more pressure on the anterior part of the spine, albeit for less time, so as to check the overgrowth more than a non-bending brace. Idiopathic scoliosis curvature is due to the front of the spine growing faster/more than the back. The spine must curve in response in a space-saving way.

Also if I understand correctly, 23 hour braces don't push the curve the opposite way, they just hold it in place so it doesn't get worse.

No I think they also aim for a large correction in brace. A number they seem to aim for is 50% correction in brace. The night-time braces of course can correct close to 100% or maybe even over-correct (>100%).

In either case the hope is to keep the curve from getting worse, not to straighten it.

That's correct. Braces only claim to hold curves from getting worse.

But as I say, this is only how it has been explained to me and may be incorrect information.

Please consider it may be people "know" how braces work but they never "show" how braces work. In any case, muscles atrophy with brace wear as they must with restricted motion.

[FAHSAI]

I'm about as confused about bracing as anyone can be but If I understand correctly the idea behind the night time(at least as it was explained to me) is to force the curve the opposite direction and by doing that the stronger muscles that are curving the spine atrophy(get weaker). And the reason for night time is because the back relaxes more during sleep so it is more susceptible to this bending the other direction.

Also if I understand correctly, 23 hour braces don't push the curve the opposite way, they just hold it in place so it doesn't get worse.

In ieither case the hope is to keep the curve from getting worse, not to straighten it.

But as I say, this is only how it has been explained to me and may be incorrect information.

[flerc]

I simply cannot make sense of what you're trying to do here.

Too much obvious really.

[flerc]

About night braces (certainly the topic of this thread), I’m not a health professional, so of course what I may believe or not, cannot be important for none here and I’m really very farrr to want to discourage nobody in any kind of solution selected, so it’s just only a comment..

I believe braces were better understood centuries ago and I have read they were removed to sleep. A simple system (surely not so much comfortable) was used to contribute with the distraction in the absence of the gravity force.

I believe braces are extremely useful (if they are used in the right way) to fight against the gravity force, so night braces would not be used when they are really useful.. I don’t see the point in using a brace just only to sleep.

[flerc]

I am a scientist.

Yes, surely a Nobel prize too.

[flerc]

Actually, what I'm trying to do is provide the background for why surgeons like Dr. Hey still do not treat bracing like chemo for cancer. If a parent were to just read your posts, we would have kids browbeaten into brace wear when more than half will not benefit for one reason or another. Maybe considerably less than half will benefit when the long term is accounted for including potential collateral damage to formerly non-structural areas of the spine.

I gave you another chance to show that background, asking you to explain what you seemed to be wanting to say with those doubts about percentage of kids ‘apparently’ helped by braces and so on, but you didn’t reply. It not surprises me of course.
Certainly, it was more ‘funny' when it seemed you were looking for strange arguments in order to deny the statistical fact about brace effectiveness until maturity as braist study did.

If you would not be dishonest and believe that surgical range should to be moved to 40° or 30° (or less?), instead of doing such kind of confusing claims in order to convince parents that braist study didn’t prove nothing significant yet, you should to contact that Dr. Hey and try to change the current medical protocol. Surely he could not show the bad outcome of his cases in something so serious as this Braist Study because he has conflicting interest (surgeries are much more expensive than braces), but anyway he might find the way to convince the medical community to does that change, who knows?.

[Pooka1]

I don't believe so. It closes in the middle of the peak height velocity.

I will have to find the relation between triradiate cartilage closer and iliac apophysis ossification which the BrAIST study used. But note that they were declaring victory at only 75% closure of the iliac apophysis (Risser 4) for girls. I don't know why they didn't use Risser 5. The other thing is given the comment about disagreement between readers, I would like to know how robust this stuff is and exactly how much disagreement there was about determining bone ages in these study patients. That sounds like yet another layer of potential noise throw in there.

The original maturity outcome was based on the change in vertical height, with adjustment for the change in the Cobb angle.19 Owing to concerns regarding the accuracy and reliability of this measure, maturity was redefined as a Risser grade of 4 for girls (75 to 100% ossification of the iliac apophysis, corresponding to near-cessation of growth) or 5 for boys (100% ossification of the apophysis with fusion to the ilium) and a Sanders digital maturity stage of 7 (defined as closure of all physes of the phalanges).20 This change was made before any analysis of the data. In the case of disagreement between the two primary readers regarding the treatment outcome, a third reader who was unaware of the treatment assignment and the treatment received broke the tie.

I found this which shows both growth indices on the same figure...

http://books.google.com/books?id=2om...tilage&f=false

Seems like triradiate cartilage is not too useful. Could be growth remaining so I am not clear on why this rules out tethering for that other girl.

[leahdragonfly]

Hi Fahsai,

I wrote you a long post this AM with some direct answers to your specific questions about your daughter's brace. I am not sure you saw it in light of the volumes of spirited discourse here, so I want to make sure you saw it, as I think my experiences with bracing (myself and) my daughter could be helpful to your family. It is post #41.

That's funny about the extra shirt, and great news especially about your younger girl. Hopefully the brace will continue to settle in to the family and all will be well.

Thanks for posting. It is helpful to read everyone's experiences.