How tight should a night time brace be?

[mariaf]

I think that unknown quality of current surgical procedures has to be weighed into any decision.

Yes, and I believe that the vast majority of parents do this. In fact, I have never met one that hasn't.

And they do so after doing hours and hours of research, and talking to sometimes several doctors, including but not always limited to, the experts performing these procedures, who by the way are extremely frank in telling parents all the 'unknowns' and reminding them that there are no long-term studies yet. I have never heard any parent give a summary of what they were told by their surgeon that in any way appeared to sugar-coat anything - in fact, quite the opposite. Speaking for myself, I was told about every single complication that could arise after my son's VBS surgery (thankfully none did); and I and was reminded (since VBS had only been performed for about 2years back in 2004) that at that time, they did not even have cases that were 5-10 years down the road to review.

I guess all of our experiences shape our views and opinions here. For my son, going ahead with VBS was the best thing we could have done - to this point anyway, and we are almost 10 years down the road, so based on the above I think parents get all the facts and are more than wise enough to sort facts from opinion.

[mariaf]

everyone is talking about the risk of bracing and no one is talking about the risk of surgery. I think the way I'd been approaching it before, while it seemed respectful, probably created an overly rosy picture of surgical procedures and didn't tell the full story.

See, I think that's where we are seeing things differently. Parents already KNOW there are many risks to surgery - during and after. As someone who handed her young child over to be placed on the operating table, it would be unbelievable for me to think that even one parent didn't spend many sleepless nights not only thinking about the surgery itself but all the things that 'could' happen down the road - the next day, the next month, the next several years. Perhaps the risks of surgery are discussed less because it's a given that they are already understood; whereas the risks of bracing (including psychological, emotional, social, etc.) maybe not be realized until years later. I have often heard adults, who were braced as kids, tell of the hell they were going through which, in some cases, their parents weren't fully aware of. Some of them suffered in silence.

[flerc]

Parents use to think (as would be with every kind of surgery) in risks related to a not succesful surgery, but not with the other yatrogenia side, that is damages done even in the most succesful surgery. I have read (literaly) thousands of posts of parents in a forum where was not surgical-non surgical sections. They just only thought in the lost of flexibility and and except for that, they were sure that their sons would have a perfect normal life after surgery, something close to a cure. 'Normal life is not so much subjetive as many people says, we may say is any kind of life not provoking any kind of significant health damage to normal people.

Justly in these days there is a stir in my country because the death of a well known 45 y.o millionaire man who had a scoliosis surgery fixing first few vertebras, but it seems he was absolutely convinced he may a have a normal life and he opted to live an explosive 'crazy life', even also after having another surgery fixing almost all his vertebras, incursing in the show world, having sex with every women and men she wanted, doing bodybuilding for getting a 'better' body, also esthetical surgeries.. but nothing very much unusual in that envoirement, even I never heard about drugs, some of his boy friends absolutely deny that, he consumed morphine in his last days but only in his failed battle against pain who finally lead him to the death and all the money of the world could not help him in that battle.
Would have had him the same end without surgery? Surely nobody may deny that possibility, but I'm sure he would have had undone fusion surgeries if he could. I saw him crying talking about her back. And nobody never talk as I know about having non succesful surgeries.

I'm not saying parents believe their sons may have such kind of life without dire consequences, but they should to think in not desired changes that succesful surgeries may do in their son bodies. When surgery is a reasonable option, to have it or not, except in extreme cases, is not a simple decision. Only an ignorant or a bad intentioned person may says the opposite.

[hdugger]

. . an overly rosy picture on the forum was the specific problem I was talking about. I think doctors try to present a fairer picture then what I've seen presented here. I understand you're trying to address a specific topic, but even in these last two posts you're very vague about any of the problems of surgery while talking about children "suffering in silence" in brace. One might come away from just those two posts thinking that, while there are some possible risks to surgery, it might be better than "suffering" in a brace. That's my point.

I've seen countless adults on this forum who are in chronic pain after surgery and are basically "suffering in silence" because no one really understands what they're going through. Children are at a great risk of suffering *no matter what treatment you choose* - one child may have a hard time in brace in the teens but avoid the surgery and be fine through adulthood, and one child may avoid the hardship of bracing, have surgery, and find themselves in chronic pain as an adult. Scoliosis is tough, really really tough. And many, maybe most, of these kids are not going to be able to avoid some kind of suffering. As a parent, that's a hard pill to swallow, but I think it's fair to present that picture clearly.

So, while I think *all* of these kids are at a great risk of suffering - your son, mine, all of them - I feel as if all the emphasis is on those teens who are "suffering in silence" through bracing. What about the teen who's been encouraged, here, not to brace, has surgery into the lumbar spine, and starts having chronic pain in their 40s or 50s? That child also has, will have "psychological, emotional, and social problems that may not be realized until years later." Avoiding bracing and having surgery isn't going to keep that child from suffering.

[hdugger]

So, anyway, that's the first thing. Most posts I've seen downplay the immediate and long term suffering of teens in surgery, and overplay the suffering of teens in brace. These kids are likely to suffer, whatever they do. You're not going to pick a treatment that guarantees that they won't suffer, either now, in the future, or both.

The second thing is the way that evidence is treated. I don't think I've seen someone mention torso rotation without someone helpfully rushing in to mention that there's only been research involving 35 subjects. And yet, I've seen the exactly same people casually recommend tethering - *tethering*! - a *surgical* procedure with no research study whatsoever and likely not yet 35 patients total.

Why is it that parents must be reminded, each time it's mentioned, that a harmless exercise routine has only had 35 subjects, while being recommended *surgery* without any mention that it's way experimental and your kid will likely be patient #35?

[flerc]

in these last two posts you're very vague about any of the problems of surgery while talking about children "suffering in silence" in brace. One might come away from just those two posts thinking that, while there are some possible risks to surgery, it might be better than "suffering" in a brace.

Yes, that strategy is a good business for Mariaf, she is really good in that. Certainly I must to take my hat off with the perfect work they are doing in this forum. If I'd want to hire someone to convince people that surgery is the ONLY one option in cases where cannot be said to not be a reasonable option, she would be one of the high top nominated without any doubt. Pooka1 never stops with this purpose, is very much 'productive' (wich is the average.. better the media (HA) of her daily posts?) and she is saying to be a scientist, but I believe Mariaf is begining to do better this kind of work.. who knows?. Anyway is a very good team.

[Pooka1]

Apparently there has been some evolution in thought here...

There is not a soul who makes decisions about treatments who is reading this forum. And, even for people reading this forum, I don't think I've seen a single person swayed by the argument not to brace. It's a tempest in a teapot.

[hdugger]

Apparently there has been some evolution in thought here...

Correct. My thought continues to evolve. If I wanted to hold onto a rigid position and talk it to death, I'd go into politics.

[flerc]

Imagine a parent reading some of her thousands of posts in the non surgical section believing she is really a scientist as she says! Nothing funny of course.

I have opened a thread in the Idiopathic Scoliosis section warning and saying what to do in order to not run that risk.. good team really..

[mariaf]

hdugger,

With regard to your last two posts, you are probably right that maybe I see more 'suffering' with bracing than with surgery (although 'suffering' could be replaced with other words like "challenges", "emotional issues", "daily discomfort" take your pick) .

Perhaps I have been blessed so far that my son has not 'suffered' because of his surgery nearly a decade ago. He is able to play baseball and basketball and is free from his brace and feels like any other kid his age. He was very unhappy prior to VBS about having to wear a brace and maybe that colors my view - that's why I said what I did earlier - I admit it, I'm biased in that regard. Now, he would mostly complain that the brace was hurting/hot/uncomfortable. He was not yet at the age where the social implications came into play but with most families I have dealt with, in the majority of the cases, they say that their kids DID suffer more with bracing - and most have told me they are thrilled that their child had surgery (for the record, I mostly come in contact with parents of VBS (and now tethering) patients).

I understand that nobody knows what will be years from now (and that goes for kids who had surgery, those whose curves that were not corrected with surgery, etc., etc.) - we just don't have that crystal ball. But I was trying to be very frank in why I may feel the way that I do. I'm not going to say that most kids I know who had surgery or VBS are now suffering more than they did when they were braced because it would be a lie.

Again, this is just my personal view and observation.....

[hdugger]

Thanks for the clarification. Yes, I think I understood that it was your sense that it was harder on kids to brace then to go through VBS or fusion surgery. I totally get the idea that one is decreasing discomfort *in the moment* by choosing VBS over bracing. I'm not as sure how one would compare surgery to bracing in terms of discomfort. I guess I'd say that bracing has a longer but lesser discomfort. Surgery is far more painful but compressed into a shorter period.

What I was suggesting in my comments was a more long-term view - not just how will this child feel in the moment or over the next five years, but how will they feel 10, 20, 30 years down the road. We're trying to make choices now that make our child's life the best it can be for their entire lives. We're not just trying to get them through their childhood.

For a child with a 20 to 30 degree curve, is the risk of suffering *across their entire life* reduced by taking them out of a brace or by keeping them in brace? Is it better to focus on reducing the short-term discomfort of bracing while increasing the risk of long-term discomfort? Or is it better the other way around?

I'm not suggesting that there's a single answer. For a teen who's miserable in a brace, you have to focus on the short term discomfort and accept that you're increasing their risk of problems down the road. For a kid who's doing OK in a brace, you'll probably swing the other way - tolerate the short-term discomfort because it reduces the risk of suffering down the road. It's always a choice, but it needs to be an informed choice. But, you're not guaranteeing that your child won't suffer by taking them out of a brace - you're just assuring that they won't suffer right now.

As an example, and not in any way to fault the parents of these patients, here's one of Dr Hey's patients needing a revision surgery for severe flatback which is keeping her from standing up straight From her xrays, it looks like she's 50 years old - I don't know how long this pain has been going on for.:

http://drlloydhey.blogspot.com/2013/...struction.html

With 20/20 hindsight, knowing how surgery would turn out for her, how would she and her parents have evaluated the relative discomfort of bracing vs. surgery? That's really all I'm trying to say. Our kids are going to get through their teen years and become adults. How can we make the whole course of their life as good as possible? What are our best choices, in the moment, to ensure the best lives for these kids? That's a very personal decision, I'm just trying to paint a clear picture so that it's a well-informed decision.

[mariaf]

Fair enough, hdugger.

In fact, I don't disagree with you that if a child is braced and tolerating it well, then depending on the size of the curve, it might be a good idea to continue with bracing, at least for as long as possible.

I do want to clarify one thing though. I was not talking simply about short term when I was comparing surgery vs. bracing. Let me explain. In my son's case, having a 40 degree curve before reaching his 6th birthday would have almost surely meant fusion later on if you ask most doctors. So, by having VBS, I was hoping to get him through his life without a fused spine. Will is work - who knows? But he almost certainly would have ended up with a fused spine had we not opted for surgery when we did.

This is just one example. But I think that most parents ARE thinking long term and trying to choose the lesser of the evils - in their particular situation.

I surely agree with you that there is no single answer.

[hdugger]

Yes, understood. We lump VBS in with surgery, but it's really more akin to bracing in that it's meant to keep these kids from ever reaching surgical territory. Fusion is more of a last ditch effort once the kid has already progressed.

I'd add that I've seen parents on this forum with exactly the same result using braces instead of VBS. In these young kids, both bracing and VBS can reduce the curve and both are meant to keep kids off the operating table. My sense is that choosing between them is a matter of balancing the discomfort of the brace against the unknowns of VBS surgery, but the results are comparable.

[hdugger]

But I think that most parents ARE thinking long term and trying to choose the lesser of the evils

The issue with all of the surgical procedures is that one can't really weigh the long-term risks because the long-term risks are unknown. Those parents of the kid who now has flatback had no way of weighing that risk because no one had been using the hardware long enough for the risk to be known.

Same thing with kids now choosing the newer fusion methods, or VBS, or tethering. We have no idea what the risks of these things are down the road, because no one has gotten all the way down that road. For VBS there must be a few kids in their 20s but no one older than that, and the tethering kids are all still kids. So, we don't know if they're looking at a serious issue, like the flatback we saw in post-fusion kids, or if it's smoother sailing ahead.

I think the best one can say of fusion is: The long term results of the previous hardware had some serious unforseen consequences which left many of the patients requiring further surgery, and left some of them in chronic pain which couldn't be addressed with surgery. We've changed the method and techniques since then to try and address these problems, and we're *hopeful* that kids going through surgery now won't have any serious issues down the road. But we simply don't have enough data to know anything for sure.

[mariaf]

Yes, understood. We lump VBS in with surgery, but it's really more akin to bracing in that it's meant to keep these kids from ever reaching surgical territory. Fusion is more of a last ditch effort once the kid has already progressed.

I'd add that I've seen parents on this forum with exactly the same result using braces instead of VBS. In these young kids, both bracing and VBS can reduce the curve and both are meant to keep kids off the operating table. My sense is that choosing between them is a matter of balancing the discomfort of the brace against the unknowns of VBS surgery, but the results are comparable.

The results often are comparable with VBS and bracing although there are exceptions. My son's curve pretty much held steady those few years he wore the brace and then improved by 15 or so degrees following VBS. There are other patients that have had even more correction post-VBS; whereas it seems to me anyway that the percentage of kids achieving correction with bracing is lower than with VBS, all other factors being equal. I am not basing this on a scientific study, but rather on the cases I have followed over the past 8-10 years.

I do agree with you, and have often said that those curves that respond well to VBS should 'generally' respond well to bracing and vice versa. Same with the more stubborn, aggressive curves, where you probably will not get as positive a result with either method.

And there will always be exceptions regarless of which method of treatment we are talking about. A lot of it is still such a crapshoot and I commend all parents for doing what they think is best for their child in a world with no guarantees.

(I also want to add that tethering, while still very new, has yielded results that if they hold up, will achieve much better results than bracing - or even VBS for that matter. I am currently following 3 girls who all had curves in the high 40's and are all now with curves in the teens to low 20' range. Each had tethering when they were around 12-13 years old, although I don't have their exact ages in front of me. One girl's curve went from 48 degrees to 18 degrees. Their surgeries were performed about 18 months ago, give or take; one girl is now done growing and the other two are close to the end of growth. So while the procedure is very new, it is also very promising. Perhaps more importantly, these girls would all have otherwise required fusion, so for them it was not a choice between bracing or surgery, but rather it was a choice between one surgery or another).