How tight should a night time brace be?

[mariaf]

Mariaf, except when chances are very close to 0 as I said, I think the decision should to be taken by the patient, not the Dr.
You said is good to not accept patients without excelent chances. I think is good for the professionals, not the patients.
What we need in any treatment is the curve showing odds against type of curve (independent variable). Probably in Vbs case is something exponential, for instance (I know degrees is not the only one variable) 95% for 35º and only 15% for 36º . If it would be the case ok, but if they not accept cases of 39º because chances are around 60%, I do not see it as something good.. except they would be absolutely sure that with other option are 100% or very close.

Right, it's not like they draw a line and say "35 degrees OK", but "36 degrees no good".

They take a lot of factors into consideration. It's just that they have found that 35 degrees is where the success rate falls by a larger margin than at other points.

It's the same logic used when they recommend that women over 35 have amniocentesis when they are pregnant. Now 35 is not set in stone, but they have to draw that line someplace - and the risk of having a baby with Downs Syndrome increases significantly around 35 and then keeps increasing as maternal age increases. A pregnant woman who is 25 or 30 would have a very small chance of carrying a baby with this sort of condition so the risks of the test (although small) would not outweigh the benefit. But most doctors will talk to their patients about this - and particularly if a woman is borderline (say, 35 or 36 years old), they may for example, decide to forego the test if the woman feels strongly that she didn't want it.

Same with VBS. If a patient is at 35 degrees but has a good amount of growth left and a somewhat flexible spine, and the parents want to try it, the doctors may say OK.

[flerc]

But what if is at more degrees no so much good amount of growth left and not so flexible spine, leading chances decreasing much but anyway very far form 0% and the parents knowing that anyway want to try it? What Drs. says to them? Sorry, although chances are not so bad, we prefer to treat only kids with greater chances.. otherwise our succesful statistics may decrease and Vbs would not be seen as something so good.. good luck with the other options!
I hope not. .

[mariaf]

But what if is at more degrees no so much good amount of growth left and not so flexible spine, leading chances decreasing much but anyway very far form 0% and the parents knowing that anyway want to try it? What Drs. says to them? Sorry, although chances are not so bad, we prefer to treat only kids with greater chances.. otherwise our succesful statistics may decrease and Vbs would not be seen as something so good.. good luck with the other options!
I hope not. .

Hi flerc,

I think you are missing the point (at least if I understand you correctly). It's not about VBS being seen as something good. It's about putting a child on the operating table and performing surgery when the doctor knows that there is almost no chance that the surgery will be successful and achieve the desired result. Who in their right mind would even want to do that to their own child? That would be close to criminal in my view - and thankfully, no good doctor is going to do that.

[hdugger]

[slip from Maria's post - yes, exactly]

I think they only have clearance to use the staples in a narrow range of cases - basically, where the long-term unknown risk is balanced by the chance that it would prove very beneficial for the child. Outside of that range, it would be considered to be too much risk for the perceived benefit.

[mariaf]

I really think it's more of not wanting to put a child on the operating table, under anethesia, etc. in a case where they know it probably won't work (and I think doctors have a very good idea which cases will likely be successful).

I get what you are saying about weighing the risk/benefit, but I don't think it's about having clearance to use the staples only in certain cases. Initially, they were using them on a broader range of patients. Then several years into it, as they kept analyzing the data, they saw that the success rate was much higher in the curves under 35 degrees.

[flerc]

So, they excludes kids with no so high chances knowing that anyway it might works!.
I know some proffesionals selects their patients in order to have the better succesful statistic (good marketing), not because they think in risks or other better options for those excluded cases.

[mariaf]

So, they excludes kids with no so high chances knowing that anyway it might works!.
I know some proffesionals selects their patients in order to have the better succesful statistic (good marketing), not because they think in risks or other better options for those excluded cases.

No, they would exclude kids (or at least try to discourage them) if they thought the surgery would not work for them.

Maybe we are having a language issue, but if a doctor told you that they were pretty sure a particular surgery would not help your child, would you have your child placed on the operating table anyway and put them through surgery? It just doesn't make sense.

[hdugger]

(good marketing).

Betz works for a non-profit (Shriners). I'm assuming that means that he's paid a flat salary regardless of how many surgeries he performs. Even were that not the case, he'd be likely to make much more money off something like growth rods (repeated surgery) then off VBS, which is one short surgery. I'm also assuming (again, maybe incorrectly) that he could rake in a lot more money by opening up a private practice.

Unless he has some deal with Medtronic on the staples (which I have no reason to believe is the case) then he's has no financial incentive to market this method.

Overall, I really have the feeling that Betz just finds the alternatives for these young kids unacceptable - the growing rods are fraught with complications - and I think that's motivated him to try to find something safer. Could he have a financial motive? I suppose he could, but nothing about him and his work suggests that he's doing anything other than trying to help these kids whose other options are pretty heart-breaking.

[mariaf]

Betz works for a non-profit (Shriners). I'm assuming that means that he's paid a flat salary regardless of how many surgeries he performs. Even were that not the case, he'd be likely to make much more money off something like growth rods (repeated surgery) then off VBS, which is one short surgery. I'm also assuming (again, maybe incorrectly) that he could rake in a lot more money by opening up a private practice.

Unless he has some deal with Medtronic on the staples (which I have no reason to believe is the case) then he's has no financial incentive to market this method.

Overall, I really have the feeling that Betz just finds the alternatives for these young kids unacceptable - the growing rods are fraught with complications - and I think that's motivated him to try to find something safer. Could he have a financial motive? I suppose he could, but nothing about him and his work suggests that he's doing anything other than trying to help these kids whose other options are pretty heart-breaking.

Yes, HD - All surgeons at Shriners are paid a flat salary regardless of how many surgeries they perform.

The way you described Dr. Betz, I would think you knew the man :-)

I have known him for a decade and what your wrote is spot on!

I understand when flerc and others question the motives of doctors in general. They are like any other profession - you will find the good, the bad and those that fall somewhere in between.

But Dr. Betz is one of a kind. He really cares about these kids. He doesn't care if he has to refer a child to a colleague. It's not about numbers for him - it's about the kids. A few years ago, the wait for surgery at Shrines in Philly was very long (before they opened a third OR), and he was referring kids to other doctors he knew and trusted (both in and out of the Shriners system) if he thought that those kids could not wait for surgery. He is extremely well respected by his colleagues, his patients and their families - and with good reason.

[hdugger]

The only point about Betz' strict control on the protocol of VBS is that it makes it very hard to compare VBS to bracing in these kids. The VBS protocol is *very* narrow - in his research, he not only excludes kids whose initial curve is too large, he also excludes kids whose curve *after* the surgery is too large. And he has some other requirements about flexibility and obviously the age and remaining growth requirement.

If you only estimated brace effectiveness using exactly the same very narrow protocol (including tossing out kids whose in-brace correction was too low) it would certainly increase bracing effectiveness numbers in this population. So, while I think what Betz is doing is fine for VBS, it does make it impossible to compare VBS to bracing (which has a far broader protocol).

[flerc]

I'm not assuming nothing about Betz. I'm only analyzing what Mariaf said: 'The criteria for VBS has gotten much stricter than it was, say, in 2002. This is a good thing because knowing what they know today (after compiling and analyzing the data that has been gathered over the past decade), if a patient is accepted as a candidate for VBS, there is an excellent chance it will be successful'. So, patients with not an excelent chance, only an acceptable/reasonable/not very low chance are excluded.

[mariaf]

The only point about Betz' strict control on the protocol of VBS is that it makes it very hard to compare VBS to bracing in these kids. The VBS protocol is *very* narrow - in his research, he not only excludes kids whose initial curve is too large, he also excludes kids whose curve *after* the surgery is too large. And he has some other requirements about flexibility and obviously the age and remaining growth requirement.

Hi HD,

I'm not sure what you mean when you say he excludes kids whose curve *after* the surgery is too large. Can you explain - maybe I am missing something. Thanks.

And yes, flexibility, age and remaining growth are definitely taken into account.

I get your point about it being tough to compare bracing and VBS in this regard. I guess the difference is if you brace a child and it doesn't work because of inflexibility, size of curve, whatever, and you knew going in that the chances for success were slim, that's one thing. But to put a child under anesthesia and put them on the operating table under those same conditions is something totally different.

I guess what Betz is trying to do is avoid putting a child through VBS surgery, only to have it fail and then, say, put them through fusion surgery anyway. The good news is that for many of these patients, tethering can be an option. And while it is quite new, the results so far have been very promising. And the thing is, for these kids (some with curves in the mid-upper 40's), it's their last chance to avoid fusion.

Anyway, you're right that it may never be a totally equal comparison (bracing vs. VBS) but I guess that has to be secondary to what's best for the kids, so we may never know exactly how they stack up.

[hdugger]

Anyway, you're right that it may never be a totally equal comparison (bracing vs. VBS) but I guess that has to be secondary to what's best for the kids, so we may never know exactly how they stack up.

Yes, absolutely. I was just making side note about comparing the two. But I think Betz is absolutely right is being so strict. Again, I have huge respect for the man - if he can keep these little kids from progressing to fusion or needing growing rods, he's done a great thing in the world of scoliosis.

On the after-procedure correction: So, I see one reference to the after-surgery number in the insurance papers, but I thought I had also seen it as a protocol. Without finding that, let me modify it to what I now find.

"The authors now use additional treatments such as growing rods or nighttime braces for curves that are greater than 35 degrees at baseline or that cannot be corrected to less than20 degrees on first standing radiograph" (my emphasis, from the Blue Cross report I quoted before)

So, if the curve does not correct to less than 20 degrees *after* VBS, then it appears that they don't think the treatment will be successful by itself and they add something else (brace or growing rods).

[mariaf]

You are certainly more well-reseached and informed with regard to VBS than most, HD!

I am impressed :-)

Dr. Betz doesn't use growing rods as far as I know (but I assume this was from an insurance carrier and I'm guessing other doctors do. Perhaps those who aren't able to perform tethering).

But Dr. Betz will add a nighttime brace in some cases. Many of these kids had VBS before they figured out about the 35 degree threshhold. What Betz told me is that if a curve does not correct to below 20 degrees, he may recommend a nightbrace to achieve more correction (depends on the case as well). So it's all part of their discovery that VBS alone may not work for a lot of kids with curves above 35 degrees before surgery, which is the category many of the kids who don't correct to below 20 degrees fall into. So it's more about the curve size before surgery. Most kids who start off in the high 20's or low 30's end up correcting to under 20 degrees so they don't fall into that category.

Hope that make sense.

p.s. I think that VBS (even with a night brace afterwards) may be more appealling to many patients than full-time bracing. It's all about giving parents/patients more alternatives to choose from. What's the right choice for one family may not be right for another family.

[hdugger]

Hope that make sense.

p.s. I think that VBS (even with a night brace afterwards) may be more appealling to many patients than full-time bracing. It's all about giving parents/patients more alternatives to choose from. What's the right choice for one family may not be right for another family.

Yes, that makes sense.

I actually agree about full time bracing for younger kids. That's just a very long time to have to wear a brace (all day for many years). I understand making a choice to wear a brace full time against the possibility of growing rods (which, frankly, scare the heebie jeebies out of me), but I agree that VBS seems far easier to tolerate.

I am really rooting for these kids. I know I'm cautious about the long term of VBS, but that is just because the data isn't there. I would very much like it to work, and I am very hopeful that it will.