How tight should a night time brace be?

[flerc]

I apologize to fahsai for the wasted space in this thread.

If you would be honest you should to do the same with.. how many other members here? You should, as you should to update/delete thousands of your posts. But of course you will not do it. You are only here to convince people that surgery is the only one option.

[hdugger]

The record is Mooney was not being straight on a number of issues, not the least of which is double publishing without saying he was double publishing.

After a good deal of searching to find the actual text of the 2003 study, I find that your statement here is simply untrue.

Here is the reference, in Mooney's 2003 article, to the previous study:

"A prospective study measuring torso rotation strength with a specific tool and the effect of resisted exercises on the strength was performed and reported in a preliminary study.’9 This article reports the continued efficacy with less complex equipment on additional patients.

...

The first study was comprised of 12 patients and 8 additional patients were added to the follow up study.

Patients in the combined studies are listed in the Table.
"

It could not be clearer what he is doing. There is *no* ethical issue here, no duplicity whatsoever.

[Note 12/29 - I have added this information as a note to my earlier posts to make clear that the ethical claims against Mooney are untrue.]

[flerc]

You are saying there is not any reason to believe it may work, right? You must to justify why are you saying that. Well, you should if you would be honest of course.. but you know moderator will always allows you to do what you want here. Good team!

Don't pretends now Pooka1 to not answer this question because you don't want to hijack this thread with out off topic discussions. It always was your work in the non surgical sections here. If you don't reply again one of my direct questions to you is because you cannot. In this thread or in any other.

[hdugger]

Here is my hasty summary of the currently published data on VBS, gleaned from PubMed:.

Thank you Gayle. I was hoping you'd have a better list.

Briefly:

1 - is the study I referred to as dismissing because it dealt solely with younger children and we were specifically discussing AIS
2 - your removal
3 - as in 1, for younger children, not AIS
4, 5, 6 - the Betz studies I was referring to. As best I can tell, these all deal with the same 28 or 29 patients. This is the number I'm using
7 - Review paper of the overall field. Coverage of VBS refers back to the Betz work - no original work
8 - predates the Betz work. 6 patients with very poor results - most of the patients advancing. Author recommends "A more general use of this technique is not recommended at this time."
9 - Not a clinical study - they're modeling staples, not actually using them on patients
10, 11 - Review studies

So, again, I'm only finding 28 or 29 unique patients covered in the VBS research that Betz specifically uses in his reviews, and only some of these are AIS. I think the original summary I posted from Blue Cross is on target, and I realize now that it is actually updated through 2013.

That's not a problem, for me. I completely understand why a parent would choose to be an early adopter. But I did want to make clear that torso rotation, which FAHSAI is pursuing, has a comparable research record.

I clarify all of this in this thread specifically to be *on* topic - FAHSAI is pursuing torso rotation. Pooka made some claims about the research (and the researchers) which I do not find to be substantiated, and I wanted to correct those statements specifically for the parent pursuing this treatment.

[flerc]

Pooka made some claims about the research (and the researchers) which I do not find to be substantiated, and I wanted to correct those statements specifically for the parent pursuing this treatment.

I may say exactly the same about LITERALLY thousands of Pooka1's claims. But she is saying to be a scientist. May someone imagine a scientist not substantiating her claims?. I can't.

[mariaf]

Yes, tethering. Seriously considered and casually recommended to parents new to the forum.

I am just catching up so I need to read through the most recent posts in this thread (I believe there is a more recent study on VBS, but I have to check).

I just wanted to point out one important fact. Tethering is not exactly an alternative to VBS. A lot of kids who are tethering candidates are not VBS candidates, and vice versa. Not always, but many times.

For instance, a young child with a 30 degree curve might not be a good candidate for tethering due to fear of over correction, but could very well be an excellent candidate for VBS.

Whereas, an older child with a larger curve might fit the criteria for tethering, but not VBS.

[hdugger]

so I need to read through the most recent posts in this thread

Thanks, Maria. If it's possible (either through full text of articles you might have or access to Betz's team) could you confirm my 28/29 number for the kids that Betz is now considering in his research? I don't want to be quoting an incorrect number, but it's difficult to pull that info out of the abstracts.

What the Blue Cross paper said was that there were 96 VBS children total (at the time of the last review) but that Betz was only considering 29 of them because the rest did not fit the (revised) protocol (which I think was using the 2002 version of the staple, plus probably his tightening of the cobb angle requirements and after-procedure corrections).

[mariaf]

Sure, I'll be glad to see what I can find when I have a little more time.

Off the top of my head, it does makes some sense to me that only a portion of those patients would fit the new criteria, and therefore be deemed as useful to be included in the study. I know that one of the most significant findings over the years has been that curves over 35 degrees do not respond as well to VBS as those below that threshold.

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.

[flerc]

But they are not accepting patients without being sure it cannot not work in those cases!

[mariaf]

But they are not accepting patients without being sure it cannot not work in those cases!

Sorry, but I'm not sure what you mean, flerc.

Let me clarify. If a patient doesn't fit the current criteria for VBS, they won't be accepted for THAT procedure, but could be accepted as patients. The doctors might just recommend another option. For example, if the curve is too large for VBS, they might suggest tethering. If a child comes in with, say, a 30-35 degree curve but does not have enough growth left for VBS to work, they might suggest going with bracing until the remaining growth is completed - and hope the curve remains where it is, etc.

[flerc]

It would only be right if it would not be any doubt about which option is always better than the others for any patient (according the curve, age..) and wich definitely cannot work in each case.
Doctors should to say the odds in each case. If someone with xº over the Vbs threshold wants to take it anyway, even after the Dr said him that odds with that degrees are only about y%, I don't think is something good to not accept him, except of course y would be very close to 0.

[mariaf]

It would only be right if it would not be any doubt about which option is always better than the others for any patient (according the curve, age..) and wich definitely cannot work in each case.
Doctors should to say the odds in each case. If someone with xº over the Vbs threshold wants to take it anyway, even after the Dr said him that odds with that degrees are only about y%, I don't think is something good to not accept him, except of course y would be very close to 0.

You say "I don't think is something good to not accept him".

Maybe we are not fully understanding each other, but I don't think it would be right for a doctor to accept him, and perform a surgery on someone knowing there was a very slim chance of success.

Having said that, let me assure you that in the case of Shriners in Philadelphia where my personal experience lies, they are very open to listening to parents and often taking a parent's wishes into consideration.

I still don't think that any good doctor would (or should) perform a surgery that they believe has only minimal chance of success at best.

Again, I may have misunderstood what you posted (if so, my apologies).

[flerc]

Why do you are talking about only minimal chance of success at best?

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.

Chances with Vbs are excelent or only minimal?

[mariaf]

Hi flerc,

I was referring to a situation where a patient presented with a curve that was too large or too rigid for the doctors to think VBS could work. Let's say the curve was 35-40 degrees.

Or we could be talking about a child who is almost done growing. In order for VBS to be successful, there has to be a good amount of growth remaining in the child.

Those are examples of cases where VBS would have only a minimal chance of success.

For patients with curves 35 degrees or less - and who have a significant amount of growth remaining - the chances of success are excellent.

I hope this is helpful.

[flerc]

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.