TSRH research shows that bracing IS effective!

[hdugger]

I'm going to try shot #2 at this

There is a world of difference between suggesting that one might do something *in addition to what the doctor prescribes* and suggesting that one do *something contrary then what the doctor prescribes*

The first is firmly in the world of parental actions - where we make all manner of decisions about what we consider safe and healthy behavior for our children - while the other is clearly in the realm of *medical* decision - where we disregard our doctors clear instructions because we figure we know better then they.

Suggestion made within the parental realm are relatively safe. Try out exercises and diet changes. If anything seems risky, consult with a doctor. As parents we do this all the time, and we're not fit to parent if we can't make these kinds of decisions on our own. Suggestions made *counter to doctors orders* are *not* safe, and you follow them at potentially great risk to your children.

So, if your child has a bacterial infection and you visit a forum where they suggest that you might want to feed them yogurt while they're on antibiotics, that's clearly parent realm advice which is in addition to your doctor's orders. OTOH, if you go into the forum and they tell you not to take the antibiotics because they've read some research somewhere which suggests that antibiotics might not be effective, that's medical realm advice which lies in opposition to your doctors orders.

All of the participants on this forum are qualified to give the first kind of advice. None of them are qualified to give the second.

[Pooka1]

First of all, nobody ever suggested you were a surgeon, how absurd! Now you're trying to twist and bias your own quotes! You made that statement when I said you were a scientist, which you vehemently denied ever making that claim, I could have sworn you were a scientific researcher the way you present yourself.

I am a research scientist who holds a doctorate in a non-medical field. That makes me a lay person when it comes to scoliosis. Anyone who is not a board certified orthopedic surgeon is a lay person when it comes to treating scoliosis (until McIntire or someone shows a muscle physiology approach works or something like that). I could hold ten science doctorates in ten non-medical fields and be a top researcher in each one (impossible!) and still be a lay person at scoliosis. These are separate fields of knowledge though they all (hopefully!) are using the scientific method. Although the are separate, some thing are obvious like whether or not there is a control group. That's the level of detail I bring which is just basic science.

[Pooka1]

I'm going to try shot #2 at this

There is a world of difference between suggesting that one might do something *in addition to what the doctor prescribes* and suggesting that one do *something contrary then what the doctor prescribes*

Here are some examples:

A parent goes with only torso rotation because they idolize Mooney and doesn't brace through the growth spurt as against advice from a surgeon.

A parent decided to use Spincor as against the advice of a surgeon.

A parent decides to use a RCS brace or a Cheneau brace as against he advice of a surgeon to use a Boston.

A parent feeds their child potentially toxic supplemental Selenium as against the advice of probably all doctors.

As far as I can tell, if a parent chooses not to brace as against a surgeon's advice after reading this forum, the most likely outcome is that they were not over-treated. The second most likely outcome is that the brace would have failed anyway. The third most likely outcome is that the brace will appear to hold the curve at least at first but maybe forever.

Now compare that to acute selenium poisoning.

You and I are simply going to disagree on where the real dangers are on this forum.

ETA: I am addressing AIS in my comments here. Other forms are a different ball game but I will add parents who choose VBS over brace as against surgeon's advice. That's looking more and more like a good parent call.

[Sherie]

I am a research scientist who holds a doctorate in a non-medical field. That makes me a lay person when it comes to scoliosis. Anyone who is not a board certified orthopedic surgeon is a lay person when it comes to treating scoliosis (until McIntire or someone shows a muscle physiology approach works or something like that). I could hold ten science doctorates in ten non-medical fields and be a top researcher in each one (impossible!) and still be a lay person at scoliosis. These are separate fields of knowledge though they all (hopefully!) are using the scientific method. Although the are separate, some thing are obvious like whether or not there is a control group. That's the level of detail I bring which is just basic science.

Then why did you deny being a scientist and calling me a liar?

Why did you make so many false assumptions at the beginning of this thread if you are so well educated in research? That's very dangerous.

[Pooka1]

Then why did you deny being a scientist and calling me a liar?

Why did you make so many false assumptions at the beginning of this thread if you are so well educated in research? That's very dangerous.

You are very confused. Your conclusions are not even a little bit right.

Re-read exactly what you and I wrote.

[Pooka1]

Here is the exchange... I was referring to the "all-knowing" part which would be a lie if I or any scientist claimed. You have to read past the first two sentences to know I was referring to that part although I admit that could have been clearer. Then it would be obvious I was not referring to the "scientist" part. It is very offensive to accuse a scientist of thinking they are all-knowing in in fact scientists are the most likely folks to know the limits of knowledge in any one field. "The more you know the less you know." I have no reason to deny being a research scientist... it is a respectable career and it keeps me off the streets.

Sherie:

So now you're saying that you're not this all-knowing scientist? You've made this claim many times.

Sharon:

This is a lie. I challenge you to find a post where I claim this even once much less "many times." No scientist is all-knowing. In fact most have learned that the more you know the less you know. So basically you are projecting your ignorance of this topic onto me and I dont appreciate it. Please cut it out.

Ask yourself about the quality of your arguments when you need to start lying to make your point.

[Ballet Mom]

Here are some examples:

A parent goes with only torso rotation because they idolize Mooney and doesn't brace through the growth spurt as against advice from a surgeon.

/
/

As far as I can tell, if a parent chooses not to brace as against a surgeon's advice after reading this forum, the most likely outcome is that they were not over-treated. The second most likely outcome is that the brace would have failed anyway. The third most likely outcome is that the brace will appear to hold the curve at least at first but maybe forever.

In actuality, Dr. Mooney was a well-respected orthopedic surgeon, if I can jog your memory.

And I disagree with your placement of the outcomes. I have read many of these scientific studies and don't come up with the same placement of results as you. I think in all brace studies, bracing stands up very well to no bracing.

Let me guess, are you a climate scientist? They seem to have their result already figured out and fit their "science" to support their view.

And I certainly don't a agree with your many times repeated belief that only Ph.Ds in a certain field can figure out what is going on. That's a very self-serving belief and leads to great abuse as we must all then just accept what a few self-serving "elite" tell us.

[Pooka1]

That's a very self-serving belief and leads to great abuse as we must all then just accept what a few self-serving "elite" tell us.

Science is based on evidence not revelation. You want to keep bringing it down to the level of belief.

The evidence for say a few billion year old earth or evolution is out there and is accessible to everyone. You have two technical degrees, one graduate, IIRC. That is more than sufficient to understand the evidence for these things or really any technical/scientific evidence at least in broad outline. You do not have to rely on a scientific elite though I admit people with much less technical training than you might.

The point is science does not require belief, it requires evidence. Nobody has to believe any elite scientists nor should they. They should look at the evidence themselves and not blindly believe any scientific claim. They are required to understand the evidence if they want to deny it though and have scientific reasons for doing so.

I'm very glad your daughter has improved. Also, I have dealt with some of the acne drugs with one of my daughters and they scare me. She couldn't remember to wear sunscreen and I think that was very dangerous. We stopped those meds.

[hdugger]

As far as I can tell, if a parent chooses not to brace as against a surgeon's advice after reading this forum, the most likely outcome is that they were not over-treated. The second most likely outcome is that the brace would have failed anyway. The third most likely outcome is that the brace will appear to hold the curve at least at first but maybe forever.

The key phrase here is "as far as I can tell." Simply you *can't* tell. This is not your area of expertise, and you're not qualified to interpret the research for other parents. The people who *are* qualified to interpret the research are routinely prescribing braces.

Either the doctors prescribing these braces are idiots incapable of reaching an intelligent decision, in which case maybe we shouldn't be sending our children to them for surgery, or your a,b, and c above is incorrect.

I'm suspecting the latter is true.

[Sherie]

You are very confused. Your conclusions are not even a little bit right.

Re-read exactly what you and I wrote.

Umm, no, I'm not confused in the least. You denied being a scientist, as you quoted here yourself:

This is a lie. I challenge you to find a post where I claim this even once much less "many times.

Now you're claiming to be a scientific researcher???

[Pooka1]

The key phrase here is "as far as I can tell." Simply you *can't* tell. This is not your area of expertise, and you're not qualified to interpret the research for other parents. The people who *are* qualified to interpret the research are routinely prescribing braces.

Either the doctors prescribing these braces are idiots incapable of reaching an intelligent decision, in which case maybe we shouldn't be sending our children to them for surgery, or your a,b, and c above is incorrect.

I'm suspecting the latter is true.

The 70% unnecessarily treated, 20% failure, and 10% seemingly helped is from one of CD's posts which I think was quoted from some paper that reassessed the problems in the previous studies. Maybe he will comment. Anyway we do have a few controlled, albeit flawed studies showing a large majority of untreated controls having a similar outcome as braced patients. And we have many surgeons admitting the lack of controls in studies has undermines claims of bracing efficacy.

The fact that bracing certain curves remains a standard of care in the face of that is just uncanny as Dolan comments. If surgeons brace in the face of no good evidence it is because it is the standard of care, not because they are missing evidence.

There might be some surgeons who think bracing works but I doubt you'll find one who claims to have very good evidence it works. Everyone is dealing with the same literature.

[Sherie]

Here are some examples:


ETA: I am addressing AIS in my comments here. Other forms are a different ball game but I will add parents who choose VBS over brace as against surgeon's advice. That's looking more and more like a good parent call.

I think this is very revealing of your intentions. It appears to me that in your mind, the only viable options are surgical. VBS is a surgical procedure wherein they attempt to hold the curve via internal "bracing". All of the patients are sub-surgical level, therefore I will use the same argument against it that you have against bracing; that some of these patients may never progress (an unknown population) and thus, have had this procedure unnecessarily. An extremely invasive procedure not without risk of complications as in all surgeries. In fact, I recently saw a post where a child's curve was progressing AFTER VBS.

VBS post-op curve progressing

So disappointed. We had our 8 week post-op visit after Vertebral Body Stapling of a double curve. The best success rate (approximately 80%) is when both curves are less than 20 degrees at the first post-op film, 4 to 6 weeks after the surgery. This success rate drops dramatically if the curves are greater than 20 degrees at first follow-up. My 11 year old daughter's first post-op film was 23* thoracic and 16* lumbar.

We were glad the lumbar curve was less than 20, and were hoping that over time, and with growth, her thoracic curve would start to straighten.

The thoracic curve is stable, but the lumbar curve has increased 5 degrees in 4 weeks, and is now 21*.

Our spine surgeon did not recommend bracing at this point, although that is the protocol at Shriner's in PA. It is upsetting, because the reason we went through this major surgery (and all of its subsequent complications) is because my daughter could not tolerate bracing.

We are scheduled for another follow-up in 3 months, and hopefully there will be no further progression.

I find this extremely odd that you would find it acceptable to go against the primary surgeons advice and pursue VBS but not pursue non-surgical procedures???

[Pooka1]

I have made that point that since VBS appears to work better on L versus T curves that there is some question that it is better than watching and waiting, at least for L curves (ETA and maybe for all curves).

There are plenty of questions surrounding VBS. VBS hasn't been around nearly as long as bracing which is mot a point in favor of bracing by the way.

For a typical JIS case who is looking at years and years of brace wear, parents have to decide if they want to try VBS.

[hdugger]

I'm going to repeat my caution again to any parents of braced children reading this thread. Please raise any concerns you might have with your doctor and do not make a treatment decision based on what you might read in this thread. Any decent scoliosis specialist will give you an honest opinion with far more backing knowledge then anyone of us can provide.

[flerc]

The point is science does not require belief, it requires evidence.

Sharon I made you a question here http://www.scoliosis.org/forum/showthread.php?t=10900
I donīt want that focus about bracing research could be lost.