Questions fo rour Clear Chiro, Smith

[Karen Ocker]

Sharing our experiences is valid.

I feel like I'm repeating this daily. Anyone is qualified to broadly discuss the research. I'm even allowing you to discuss the bracing research, even though you don't have the necessary qualifications to do so (and even though I wish you'd restrain those discussions to the research forum.

*No one* here is qualified to 1) make a specific treatment recommendation of other people and 2) diagnose the psychological problems in those other people that might keep them from accepting the first diagnosis.

The first thing is called a discussion, the second is called practicing medicine without a license.

Dear God, our *doctor* isn't even recommending surgery! Maybe he's being driven by denial and fear as well. I'll be sure to ask him next time I see him.

Sharing our experiences is not "practicing medicine without a license". I am a medical professional and have come across physicians who are absolutely clueless about scoliosis. That is why the "doctor" must really be an experienced scoliosis specialist. I have administered anesthesia for scoliosis surgery. I also know very well the pulmonary effects of scoliosis. I have also seen patients on respirators because their scoliosis had progressed to that point.

One house physician, while I was hospitilized for an unrelated medical problem said to me: "Scoliosis surgeries are never done over the age of 19." This was 4 years ago. I proceded to tell about my successful revision at age 60. This was a relatively young physician!!! So much for that "doctor's" knowledge. Where would I be if I listened to him?

[mariaf]

Sharing our experiences is not "practicing medicine without a license". I am a medical professional and have come across physicians who are absolutely clueless about scoliosis.

Well said.

I am NOT a medical professional, but in the decade since my son was diagnosed I have learned quite a bit about scoliosis, particularly early onset scoliosis. I am not trying to toot my own horn, but the truth is that I have 'taught' a couple of physicians a thing or two about scoliosis in children, including my son's current pediatrician who asked if I WAS in the medical field. I told him no, I'm just an educated parent of a child with scoli.

Our former pediatrician acted like it was impossible for a young child to have scoliosis. She kept telling me that my toddler had 'extra muscle' on one side, etc. It was only when I insisted on an x-ray that she ordered one.

So, yes some physicians are absolutely clueless about scoliosis.

[Pooka1]

I agree it this technically true that anyone can discuss the research. And certainly several lay folks have come up to speed and then some like Karen and Maria. In my own agency, there are a few top researchers who do not hold PhDs and they are producing excellent, defensible studies.

But the big caveat is that you have to know how to go about it and you have to have some way of determining if you have mastered the fact case. You have to understand the literature and its limitations.

The research section is Exhibit A in how lay folks can fail at mastering the fact case. So while they are discussing the research, it is worse than useless for the bunnies.

[Pooka1]

and even though I wish you'd restrain those discussions to the research forum.

I've tried and tried but I don't understand your point here.

When known, either statements are or are not supported by the evidence. Why does it matter in which section they appear? Do they stop becoming supported by evidence in one section and not in others? How?

[hdugger]

Sharing our experiences is not "practicing medicine without a license". I am a medical professional and have come across physicians who are absolutely clueless about scoliosis. That is why the "doctor" must really be an experienced scoliosis specialist. I have administered anesthesia for scoliosis surgery. I also know very well the pulmonary effects of scoliosis. I have also seen patients on respirators because their scoliosis had progressed to that point.

Our doctor (actually two doctors) are SRS specialists. Neither have recommended surgery.

Hence my surprise at having someone on the forum not only strongly recommend surgery, but suggest that I must be suffering from fear and denial if I didn't somehow concur with the recommendation. That goes way beyond "sharing our experiences."

My son is an intelligent adult, I have medical research training, and we're working with two SRS professionals. We're quite capable of reaching an intelligent decision *which differs from yours* without suffering from psychological delusions.

[hdugger]

I've tried and tried but I don't understand your point here.

When known, either statements are or are not supported by the evidence. Why does it matter in which section they appear? Do they stop becoming supported by evidence in one section and not in others? How?

I don't think it's clear, outside of the research section, how nuanced the evidence is, or that it's being filtered to support a particular conclusion.

So, just to take one point that gets thrown around in general discussion, that bracing is over-treatment for x percentage of people.

You and I know that that means that that percentage would not have gone on to surgery regardless of the treatment they received, but I don't imagine that's the general understanding of everyone who just stumbles across that statement. Someone seeing that for the first time *could* think that it meant that bracing has been proven not to alter in any way that percentage of curves. That would be a reasonable, but untrue, conclusion to draw from that statement.

That's just one example, but I could go through all of the statements made against bracing and draw out their nuances. Again, I think it's perfectly reasonable to discuss the bracing research in the research section, but I'm really not comfortable with the abbreviated, "everyone knows what I mean," way that the very nuanced realm of bracing research is presented as hard, clear fact outside of that area.

The very best summary of the bracing research, consumable in all areas of the forum, is "the bracing research is not all that clear - you should talk to your doctor about how effective it might be for your child."

[Pooka1]

The very best summary of the bracing research, consumable in all areas of the forum, is "the bracing research is not all that clear - you should talk to your doctor about how effective it might be for your child."

I agree with this statement. Thus I disagree with all statements stating or implying that bracing has much evidence behind it. And I especially disagree that there is any evidence out there that can be used in a predictive sense which is the end game. Last, I CLAIM these opinions capture the most evidence out there NOW and are not "nuanced" or cherry-picked or whatever to arrive at a particular conclusion. I stand on the (English-language) literature.

You wrote,

Someone seeing that for the first time *could* think that it meant that bracing has been proven not to alter in any way that percentage of curves. That would be a reasonable, but untrue, conclusion to draw from that statement.

Yes people routinely confuse, "proved to be ineffective" with "no evidence it affects the bottom line."

I have pointed that out several times. While I have to throw myself on my sword in any number of instances in terms if inexact wording, this isn't one of them. I have never stated that bracing has been shown to be ineffective.

There is mounting independent and mutually-buttressing evidence that ~75% of kids are indeed braced needlessly in that they wouldn't have reached 40* anyway. And even if there was evidence that people with 35* curves have more and(or) earlier degeneration associated with the curve than people with a 25* curve, that still leaves open the question of whether or not bracing (or PT) can even do that much (keeping small curves small or decreasing the progression from say 40* to 35*).

I am not trying to mislead anyone on this point and never have.

[hdugger]

And I think all of these discussions are perfectly reasonable to have with people who are independently seeking bracing (outside of a doctor's recommendation).

But I still question having them around people whose doctors have prescribed bracing.

To offer up a somewhat similar situation, let's assume the research isn't very clear about how much lifting is recommended after the surgery. I'm guessing that's the case, although maybe there's some huge storehouse of elegant "post fusion lifting" research that I haven't found. It's also reasonable to assume that some, perhaps most, patients could have far less restrictive lifting restrictions. I'm guessing they gear the restrictions to the most fragile patients. So, all this could be true or not, but let's suppose it all is.

Given this, I can't imagine *anyone* on the forum posting to a discussion where someone said that their surgeon had told them they couldn't lift more then 10 pounds for 4 months and letting the research fly. "Hey, you know, you're probably being over-restricted. 60 percent of patients can lift 10 pounds the day after surgery with no problems. Lots of doctors don't even have a lift restriction. It's not clear that the lift restriction does any good. The research is really awful. Really, lift or not as you please." or even "you know, there is absolutely no research on lifting after scoliosis surgery. It's just an unproven belief. Lift as you wish."

You see my point, I assume. In every other case where a doctor has explicitly told a patient to do or not do something, assuming we don't somehow think he's not qualified, we stay the hell out of it. That's not because the lifting literature is so much stronger then the bracing literature (again, I assume). It's because somehow we've gotten it into our heads that, in this one area, a bunch of rank neophytes badly reading some subset of the literature with no clinical experience whatsoever trump a patient's own scoliosis specialist giving them an explicit prescription.

[Pooka1]

No specialist is being trumped with any of this. Saying bracing might be worth a try is different than saying that bracing is known to spare kids from surgery. I doubt that any surgeon would disagree with the following statement,

"The bracing literature leaves open the questions of efficacy in terms of avoiding surgery for several reasons, known and unknown. Further, new evidence is entirely consistent with older evidence that a majority of kids are braced needlessly. While more study is always in order, this question appears to be converging on an answer."

A surgeon might say he thinks or feels that bracing works in certain instances but he won't claim there is good evidence for it. Everyone is dealing with the same literature here. If someone disagrees then all they have to do is pony up the papers and then explain to all the surgeons participating in BrAIST why they have read the literature incorrectly. Simple!

None of this is merely a lay person's opinion as you state. In my case, I have read the literature and simply agree with the great run of surgeons on this point. Again, everyone, surgeons and bunnies alike, are dealing with the same literature. The fact that one bunny comes to the same conclusion as many surgeons (independently I might add... before I fully realized what was going on with BrAIST) is just a random fact. It means nothing.

[Pooka1]

And I again feel it necessary to point out the double standard you are maintaining... bunnies apparently can't grasp the bracing literature enough to discuss it but they can grasp the biochemistry(!) literature enough to discuss it.

The bracing literature is not all that impenetrable without training like, say, biochemistry is in my opinion.

Perhaps you have never taken a biochem course to know just how mangled it has been on this group. That's my best explanation for why you refuse to acknowledge the biggest trainwreck BY FAR between bunnies and science is the set of biochem posts in the research section.

[hdugger]

No, I don't think your summary statement is good at all. Again, I could just as easily tell every post-surgical patient "there is no documented evidence of any risk in lifting after scoliosis surgery. It's just unscientific, unproven belief." I don't do that because I assume that skilled practitioners have a reason for making their recommendations, and I don't have the necessary qualifications to second-guess or override them. Likewise, neither do you. Even qualified surgeons don't make blanket treatment recommendations to patients they know nothing about - I don't understand why you feel you're more qualified then they are to intercede in a doctor-patient relationship.

As to the general statement, I'm making a distinction between offering advice which runs *counter* to what a patent's surgeon recommends vs. people discussing research which lies outside of anything surgeons specifically recommend or don't recommend.

It's the difference between telling people not to take their antibiotics for an infection and discussing research which shows that a balanced diet is helpful in fighting an infection.

I can't figure out why you *don't* see the difference between those two things, and I can't imagine there's anything further I could add that would make it any clearer.

[Pooka1]

I don't understand why you feel you're more qualified then they are to intercede in a doctor-patient relationship.

I don't feel that way and deny doing that. Down the line.

I can't figure out why you *don't* see the difference between those two things, and I can't imagine there's anything further I could add that would make it any clearer.

After seeing your summary of the TRS thread, I am convinced we are at an impasse on several issues. It's at the point where I keep wanting to say we are reading different fora. It's that divergent. I can't put my finger on why that is but is shocks me given your background.

Oh well.

[Ballet Mom]

I can't figure out why you *don't* see the difference between those two things, and I can't imagine there's anything further I could add that would make it any clearer.

Pooka is on a mission, and she deliberately chooses not to see and she chooses to repeat her mantra over and over again, deliberately. It couldn't be clearer.

And if she's in a governmental agency, I suggest that agency be defunded. What a waste of taxpayer money.

[Ballet Mom]

Our doctor (actually two doctors) are SRS specialists. Neither have recommended surgery.

Hence my surprise at having someone on the forum not only strongly recommend surgery, but suggest that I must be suffering from fear and denial if I didn't somehow concur with the recommendation. That goes way beyond "sharing our experiences."

My son is an intelligent adult, I have medical research training, and we're working with two SRS professionals. We're quite capable of reaching an intelligent decision *which differs from yours* without suffering from psychological delusions.

Just a friendly warning hdugger. You are well on your way to becoming an outcast by speaking out against the forum narrative. You will have my sympathies when they start calling you ignorant. :-)

[hdugger]

I can't put my finger on why that is but is shocks me given your background.

Well, if you need an explanation, although I'm highly educated, I also dropped out of the 8th grade. Maybe that's the source of my ignorance.

Or, you know, maybe there is one monolithic world view. In which case, I'm right and you're wrong.