How tight should a night time brace be?

[Pooka1]

It certainly seems like you can win the battle and lose the war in this game. Life is very unfair.

[Pooka1]

That link doesn't seem to work. Here is the blog post...

http://drlloydhey.blogspot.com/2012_08_01_archive.html

http://drlloydhey.blogspot.com/2012/08/yesterdays-adolescent-idiopathic.html



This does not seem like the exception any more. When most kids who are treated "successfully" with bracing are in the range of 30* to <50** at skeletal maturity, and anything <30* is not thought to be protective against future progression, then that would account for why Dr. Hey sees "countless cases" of progression in folks who are subsurgical at maturity. We may not need BrAIST to conclude certain realities about the efficacy of bracing. The clinics might already have the data.

This paradigm seems to need revisiting.

[Pooka1]

Dr. Hey has seen &quot;countless&quot; cases of progression in &quot;stable&quot; scoliosis

http://drlloydhey.blogspot.com/2012/08/yesterdays-adolescent-idiopathic.html

I shared with him that the curve could remain stable, but due to the asymmetric loading of his lower lumbar discs, that there was a possibility that the lower curve could collapse, and lead to a painful degenerative scoliosis that could even result in spinal stenosis. I've seen countless cases of patients in their late 20's, 30's, 40's, 50's, 60's and beyond who were told their curve was "stable" and they were "done growing" as a teenager finishing off treatment for adolescent scoliosis, only to find out a few or many years later that the curve had begun to progress again. Logan is extremely bright, and seemed to get the long-term choice he faced, given the possibility of realigning his spine now when he is younger, and possibly be able to save the bottom 2 or 3 discs for a lifetime, while also enjoying a better posture.

This does not seem like the exception any more. When most kids who are treated "successfully" with bracing are in the range of 30* to <50** at skeletal maturity, and anything <30* is not thought to be protective against future progression, then that would account for why Dr. Hey sees "countless cases" of progression in folks who are subsurgical at maturity. We may not need BrAIST to conclude certain realities about the efficacy of bracing. The clinics might already have the data.

This paradigm seems to need revisiting.

[Pooka1]

Of that 93%, at least half wore the brace needlessly. And we still don't know their final curve measurements. A 49* cure was a "success" in the BrAIST study. The final curve measurements were conspicuous by their absence in the first BrAIST article on the results. Hopefully they will publish these measurement soon so we know what to make of the published percentages. Until then, the 93% is uninterpretable to folks who understand this game.

ALso, there is no long term. Perhaps it is this subset who goes on to progress with bracing only delaying surgery.

The people who are in no danger of having to wear a brace tend to be the most cavalier about it as we see in these posts. They also tend to not acknowledge the ethical issues. These are some of the people who would brace with a 1% chance of success or a 1 in ten thousand chance or even a one in a million chance.

It's important to advocate for children.

[hdugger]

The other issue is that there is some agreement that 30* or less at maturity is protective against future progression to surgical range. Within the range of 30* to 40*, I think there is an ethical issue with 23/7 hard bracing especially since it could be that braces only delay surgery in the subset of kids who were apparently successful with bracing at the point of maturity and who didn't wear a brace needlessly.

Less than 30 is unlikely to progress in maturity, over 50 is likely to progress. 30 to 50 falls somewhere between the two - they could be fine for life, or they might run into problems down the road. So, the cutoff is not 30 degrees, it is 50 degrees.

I'm going to parse through the sentence on bracing because it seems suggests things which aren't in keeping with the research:

"an ethical issue . . . since it could be that braces only delay surgery" - well, it *could* be that braces only delay surgery. I'm not aware of any research that shows that, but I guess it could be. See my previous post - in any long term study I've seen, braced and surgical kids have about the same level of resurgery, pain, etc. So, not to say that what you're proposing isn't so, but you'd need to show me some evidence of its truth.

"in the subset of kids who were apparently successful with bracing" - from the research, the successful subset is pretty substantial for those kids wearing a brace 23/7. Only 7 or 8% of them go on to have surgery by maturity - 93% of them avoid it. That's more than a subset - I'd call it an overwhelming majority.

"who didn't wear a brace needlessly" - see the two sentences above. 93% avoiding surgery by maturity, and most of those then dropped into about the same risk pool of future surgery as adults as the kids who had surgery, at least according to any long term study I've seen.

Is it better to hit 18 with a 32 degree curve in an unfused spine vs. 15 degree with a fused spine? Beats me, but I haven't seen anything which suggests that one is greatly preferable to the other in the long run. Until I see that, avoiding the danger of the initial surgery would tip the scales towards bracing, IMO, and apparently in the opinion of all those experts who are choosing not to do surgery until the child hits nearer to 50 degrees.

[Pooka1]

The other issue is that there is some agreement that 30* or less at maturity is protective against future progression to surgical range. Within the range of 30* to 40*, I think there is an ethical issue with 23/7 hard bracing especially since it could be that braces only delay surgery in the subset of kids who were apparently successful with bracing at the point of maturity and who didn't wear a brace needlessly.

[hdugger]

An issue that is not emphasized . . .

I'll let Linda chime in, but nothing I've seen on any forum I've participated on suggest that a "collapsing lumbar" is a frequent outcome of an untreated thoracic curve. I've hardly seen anyone on these forums self reporting with a collapsing lumbar, so I'm assuming the condition itself isn't all that common. It is true that non-structural curves (either thoracic or lumbar) may become structural over time. I assume that surgeons are factoring this risk in when they decide whether or not to surgically treat a curve in a child or teen, and that the current 50 - 60 degree cut off balances the risk of putting a child through surgery vs. the benefit of (maybe) keeping them from having a longer fusion later on.

From all of the long term studies I've looked at, braced kids and surgical kids are about the same as adults - neither one is more likely to be in pain, need future surgery, etc. That is, surgery doesn't reduce the risk of future surgery, and bracing doesn't increase the risk of future surgery. Assuming what I've read is a fair sample of the research, that would suggest that you want to brace to avoid surgery, since it's the less risky route. And, in fact, that's what surgeons recommend - brace in order to keep the child off the operating table.

[Pooka1]

An issue that is not emphasized with thoracic curves is the potential damage to the lumbar if the thoracic curve isn't straightened. Dr. Hey posted a story of woman who had a 30* curve at maturity which stayed at 30* but her formerly non-structural lumbar curve completely collapsed and now she is heading towards a lumbar, NOT THORACIC fusion. Incredible. Now I am assuming this is not common but there was no indication in that blog post that Dr. Hey was shocked at seeing this.

Here's that blog post and some other relevant posts... the first one is that woman with a T30/L18 who is now losing her lumbar. Since there is no surgeon who would have fused her T curve, she was destined to lose her (formerly non-stuctural 18*!) lumbar. That is what it means to be fundamentally screwed.

http://drlloydhey.blogspot.com/2007/...scoliosis.html

http://drlloydhey.blogspot.com/2011/...ddle-aged.html

http://drlloydhey.blogspot.com/2011/...in-review.html

http://drlloydhey.blogspot.com/2013/...e-who-had.html

http://www.scoliosis.org/forum/showt...to-save-levels

As Dr. Hey points out, simply being out of alignment in say a false double T40/L30 at maturity over the years will cause damage to the previously non-structural areas. I would like to see stats on how often lumbars become structuralized under untreated (non-straightened) thoracic curves. I think parents should be told these stats. I think kids who have large but still sub-surgical thoracic curves over large non-structural curves are somewhat screwed because there is a likelihood of structuralizing the lumbars but no surgeon will want straighten a 40* thoracic curve (except perhaps Dr. Hey who does recognize this problem). This is what I mean by snatching defeat out of the jaws of a seeming victory with using a brace to hopefully hold a large though sub-surgical thoracic curve below the surgical threshold at maturity. I suspect eventually this strategy of having a myopic focus on keeping a thoracic curve <50* at maturity will be shown to be misguided and these kids will be stapled or tethered or fused with curves that are smaller than they are now.

In my lay opinion, thoracic fusions are as much to stop the progression in the thorax as they are for saving the lumbar from ever needing fusion which is arguably as important if not more important.

ps. Here is a baby otter being bottlefed to cheer folks up... :-)

https://www.facebook.com/photo.php?f...e=1&permPage=1

[leahdragonfly]

Fahsai,

I noticed you live in Oregon (as we do). I sent you a private message. You can find in under the Notifications tab on the upper right of your screen.

[mariaf]

Coolblue,

I just responded to your PM.

I'm not sure why your emails were bouncing back but hopefully we can connect soon!

[FAHSAI]

Pooka1,

I am so happy for you and your daughters that it has worked out so well for them and that they are doing well and thank you for sharing all this info on surgery, it eases my mind that there is a happy ending for us if it comes to that.

For now we will continue on the brace+TR+PT path and hope for the best but if it comes to Surgery at least I know it is not
a sentence of pain, agony and physical limitations for the rest of her life.

Also I know I shouldnt beat myself up over not seeing this sooner, but sometimes I just do. I feel like I should have looked at her more carefully but even if I had I probably wouldnt have know what to look for anyway.

I still think there should be more information about how to watch for this when they are younger. I know we are really watching our younger daughter(7 yrs) now to see if we see any signs of it and she has a Dr apt monday and my wife will really quiz the doc about it for sure.

anyway thanks again, I appreciate your input and information

[Pooka1]

It's very important not to beat yourself up over not seeing this. My one daughter was very asymmetrical before my friend noticed it and commented. Once she did, I noticed it immediately. It's a common phenomenon and parents should never beat themselves up over it. It is especially hard to detect in a child with balanced curves like your daughter has. My one daughter was not balanced but the other one was. The balanced one has a false double which I'm guessing your daughter has (two large curves but only one is structural). Even after knowing what to look for, the only thing I could spot was her ribs were slightly closer to her hanging arm on one side. Her curve was north of 50* at that point. So again, don't beat yourself up. :-)

Surgery is surgery but both my kids were back in school full time between 3 and 4 weeks out. They have never looked back and I have very high hopes their lumbar was saved and they will never need an extension. They are both fused T4-L1. I asked them if they notice that they are fused. They say they feel normal. In fact they do have a somewhat smaller range of motion bending from side to side but I guess they don't remember how far they used to be able to bend so to them, they are normal. It's really a huge win for them... looking and feeling normal and saving their lumbars. It is impossible for them or me to think of surgery as having lost the game. It won them their lives in an unfair universe. I am so grateful that this surgery exists. My daughters would not have completed high school in my opinion had they not be straightened. Now they are just finishing up their first semester in college and enjoying life. That would not have been the case absent surgery.

Just another perspective.

[FAHSAI]

Thanks Pooka1,

I happy for you and your daughters that it has worked out so well for them.
Your descriptions of the newer system eases my thoughts about it alot.
I guess even though I had watched videos about it and saw a model of it in the doctors office it still scared me.
Its good to know that if it comes to that it can make their lives so much better.

Our daughters scoliosis is confusing to me because if I look at her back when she is standing(with shirt off) it is very hard to see that it is there. Her left shoulder is slightly lower than her right and her waist is indented a bit on the right side and her right scapula sticks out slightly because of tiny bit of rib hump but that's it.

When she leans over and I look at her spine I still cant see how it is curving.

Of course the X-rays show it but from outside appearance its very hard to see. Anyone who didnt know she had it would not even notice it. In fact we had no clue until her doctors visit for school sports. She has no pain or discomfort at all, is Very flexible and is just a happy kid.
We Just didnt have a clue it was going on.

It makes us feel like bad parents because maybe earlier detection would have helped too. I guess its frustrating that there isnt more information
out there about how to watch for this, but I know its really kind of rare compared to other more common diseases.

She will get an X-ray in the brace on monday and then one without the brace next month, we will see how it is going then I guess.....

thanks again for your info, I really appreciate it, and I am glad I found this forum, its a wealth of information

take care

[Pooka1]

It is nice to know that people get along fine after surgery. I worked with a woman for many years who had the rods in her back and one day one of them
broke. It was a long time ago and I didnt understand the first thing about scoliosis but I do remember it was painful for her.
If I remember correctly though, they just took the rods out. but maybe thats just my old memory. That was 25 years ago or so, I assume there have been many improvements since then.

I think maybe that memory might be why I am so dead set against it.

That long ago, she might have had an Harrington rod. These attach at the top and bottom. That you say she only needed to have it removed suggested it just popped off at the top or bottom. Her fusion was probably still intact and so didn't need any further treatment. Rod breakage with the newer instrumentation almost certainly indicates an area of non-fusion which has to be re-fused and the rods replaced.

These days, they have pedicle screw systems that attach the rods at many points. Because of this, you can get a better correction and even hyper-correction in some cases. My one daughter was hyper-corrected from 58* to "no residual scoliosis" per the report. The reason these pedicle screw systems are such an advantage is because the better the balance achieved, the better the alignment of the non-fused vertebra, the less chance of needing an extension. I think that is why our surgeon told my daughter with the now straight spine that this is one-stop shopping for back surgery in her life. And she went from an obviously twisted person with a huge hump on her back to looking completely normal. I doubt she would have been willing to leave the house if she twisted up any more. She looked like a pretzel.

Another surgeon, in an interview, was asked what is the most important advance in this field and he said the pedicle screw.

Getting to the point of surgery is certainly not the end of the line in terms of declaring defeat. For my other daughter, she worried that the brace would hold her (at ~40*) and she would never qualify for surgery and have to live like that out of alignment. I worried about the future living with 40* and the damage that misalignment would have wrecked. And worse of all, eventual lumbar involvement. Kids with thoracic curves who are not treated and then lose their lumbar also are the some of the saddest cases for me. They go from only needing a thoracic fusion which my kids say is not restricting (you don't bend much through the ribs) to losing your lumbar also which is a noticeable lose of motion. It is snatching defeat out of the jaws of victory. Dr. Hey makes this point continually of a stitch in time saves nine.

For my daughters, surgery gave them back their childhood and their lives in many ways.

[FAHSAI]

thanks Pooka1,

I'm happy for you and your daughters that you have gotten to a point where scoliosis is no longer an on going issue.
I hope we can get there too but I hope its not with surgery.
It is nice to know that people get along fine after surgery. I worked with a woman for many years who had the rods in her back and one day one of them
broke. It was a long time ago and I didnt understand the first thing about scoliosis but I do remember it was painful for her.
If I remember correctly though, they just took the rods out. but maybe thats just my old memory. That was 25 years ago or so, I assume there have been many improvements since then.

I think maybe that memory might be why I am so dead set against it.

thanks again for all your input and information it is appreciated