Waiting and Watching - Parents Beware

[Pooka1]

The blog entry and many comments from others can be shown to be scientificially illiterate. CD makes some of the points.

Similar to thread about rod breakage on Fix's forum, it's one Emily Litella moment after the next with some folks.

What we have here is a scared mother* who clearly knows zip about the research (or lack thereof) on scoliosis treatment modalities who canNOT be expected to get the details correct. I am SO glad the doctor's name was left out because I think it's risible how some folks come on here claiming respected experienced surgeons are telling them patent nonsense.

You would think from reading some of the posts here that orthopedic surgeons are complete idiots and that mothers with ZERO medical training, not to mention LESS THAT ZERO advanced training in orthopedic surgeon act like they know more than these surgeons.

If you don't understand why surgeons do something then just ask them. What we have in this thread is certain folks not knowing and instead of asking, they instead make up wild, baseless nonsense.

*I searched on the text strings for that blog entry and can't find the source. I am wondering if it is a real blog entry on some blog. I think it would find it but I'm not sure.

[Pooka1]

I've removed this post because there was a complaint about my tone (as opposed to the substance).

Edited to simply say lay people probably know less about serious orthopedic issues than orthopedic surgeons.

Please excuse the penetrating glimpse into the obvious of that but I think it needs repeating.

[Pooka1]

I'm surprised to find that there's a scoliosis specialist who apparently feels so strongly that bracing doesn't work that he wouldn't give the parents a choice.

Even I don't believe that.

I doubt the story.

[Pooka1]

It is good that Ballet Mom didnt include the doctors name. It is not unlikely that the mom she quoted missed some detail that is relevant.

Isn't a much more likely explanation here that the mother got every detail exactly right and that the surgeon is just an idiot who knows less about scoliosis treatment than the mother?

[Lorraine 1966]

Sharon, thank you for taking the time to write these posts, you have put them into perspective. I agree with you 100%.


Lorraine.

[Ballet Mom]

CD,

The doctor apparently waited for evidence that the curve was progressing. The fact that the girl had already gone through a significant growth spurt (4 inches in a few months) suggests the possibility that he felt she was close to the end of her growth. I believe it is standard protocol to demonstrate a progressing curve in a post menarchal girl before bracing (for curves below 25).

I can't imagine any doctor thinking that a girl who had just grown 4 inches in the last few months would suddenly be done with their growth spurt. Growth charts show that clearly, and it's why doctors continue to brace for a couple of years past menarche. And her curve is not below 25, it presented at 25.

What is baffling is why surgery at 32 degrees.

You must have missed this post, I posted it below the first:

The scoliosis has increased 4 degrees since the last visit in March, 3 months ago. ________ has open growth plates meaning that she has quite a bit of growing left to do. For this reason, It is likely the curve will continue to increase during ________'s growth spurt.

So actually the surgeon was scheduling for surgery at 36 degrees. Notice that she has open growth plates which clearly a surgeon wouldn't have mistaken for her already being through the growth spurt, in fact it appears the mother has been told her daughter still has a lot of growing to do and that is probably why the doctor was anticipating she would require surgery.

But it's a nice try at rationalization. I'm not sure why we're doubting this mom seeing as Pooka has already stated that she has gone to two surgeons who don't brace at all (one has started night bracing just recently). I think the practice must be widespread.

[Pooka1]

So actually the surgeon was scheduling for surgery at 36 degrees

Not believable absent other factors. Do you know why?

Notice that she has open growth plates which clearly a surgeon wouldn't have mistaken for her already being through the growth spurt, in fact it appears the mother has been told her daughter still has a lot of growing to do and that is probably why the doctor was anticipating she would require surgery.

My daughter was at 40*, had open growth plates and therefore growing to do and surgery wasn't even mentioned.

I don't believe the story. Someone got something wrong.

You don't really understand why the story is unbelievable and so you believed it.

[Ballet Mom]

CD, thanks for the offer of the study, but I can read what I want to off of the study abstract:

A Prospective Study of Brace Treatment Versus Observation Alone in Adolescent Idiopathic Scoliosis
A Follow-up Mean of 16 Years After Maturity
Aina J. Danielsson, MD, PhD,* Ralph Hasserius, MD, PhD,† Acke Ohlin, MD, PhD,†and Alf L. Nachemson, MD, PhD*

Results: No patients who were primarily braced went on to undergo surgery. In patients with observation alone as the intention to treat, 20% were braced during adolescence due to progression and another 10% underwent surgery. Seventy percent were only observed and increased by 6° from inclusion until now. No patients underwent surgery after maturity. Progression was related to premenarchal status.

Conclusion: The curves of patients with adolescent idiopathic scoliosis with a moderate or smaller size at maturity did not deteriorate beyond their original curve size at the 16-year follow-up. No patients treated primarily with a brace went on to undergo surgery, whereas 6 patients (10%) in the observation group required surgery during adolescence compared with none after maturity. Curve progression was related to immaturity.

I think this study is a perfect example of why doctors brace. How dare anyone consider writing off the ten percent of patients would progress to surgery without bracing and how dare people think it acceptable to let the curve increase in non-braced patients an average of six degrees?

If you don't want to brace, don't brace. Don't force everybody else into your decision.

Pooka, please notice that at sixteen years follow-up patients with a moderate or smaller curve size did not deteriorate from their original curve size.

[Pooka1]

Pooka, please notice that at sixteen years follow-up patients with a moderate or smaller curve size did not deteriorate from their original curve size.

Are you as sure you understand this study and how well supported their conclusions are as you are about how patients are recruited into clinical trials?

Also, do you think the surgeons who say there is no good proof that bracing works simply haven't read this paper? Or don't understand it as well as you do? How do you explain the fact that many surgeons claim there is no good proof that bracing works? Are they high? Are they simply not as smart as you? What?

[Ballet Mom]

My daughter was at 40*, had open growth plates and therefore growing to do and surgery wasn't even mentioned.

I don't believe the story. Someone got something wrong.

You don't really understand why the story is unbelievable and so you believed it.

Really Pooka, I know you'd like to try and convince everyone that I'm an idiot, but I truly just think it makes you look bad. I would suggest you stop foaming at the mouth.

Different doctors are, well, different. I just pointed out a surgery that was done at 36 degrees. If you're so concerned, I'm sure you can just take your second daughter there and be done with it, if only you can convince your daughter she wants the surgery.

[Pooka1]

Different doctors are, well, different. I just pointed out a surgery that was done at 36 degrees.

No your didn't. I don't believe that operation occurred unless there were other factors at play. You wouldn't know if there were other factors. It is misleading to relay that testimonial when you don't know the full story. It's essentially quote-mining which is not honest although in this case I don't think were were consciously trying to mislead. You just didn't know to ask the right questions.

I don't think you are ever trying to lie. I think you are breathtakingly clueless on many subjects from how patients are recruited in clinical trials to how various science agency heads interact (or don't). I am not saying your aren't intelligent. I am saying you are missing many key facts about the things you write about and it is obvious.

[Ballet Mom]

No your didn't.

Prove it.

Find it yourself. Others will remember. We discussed it on the forum.

[Pooka1]

Really Pooka, I know you'd like to try and convince everyone that I'm an idiot,

There is a difference between intelligence and knowledge. You could have all the intelligence in the world and not have knowledge.

For example, you either know what other top scientists are saying about Collins or you don't. That is "knowledge" as opposed to intelligence.

Do you see that distinction?

[Ballet Mom]

Pooka,

Quote:
Originally Posted by Ballet Mom
Pooka, please notice that at sixteen years follow-up patients with a moderate or smaller curve size did not deteriorate from their original curve size.

Are you as sure you understand this study and how well supported their conclusions are as you are about how patients are recruited into clinical trials?

How about another recent study that supports this study?

http://www.sosort-lyon.net/pdf/saa23.pdf

Title: Long-term outcome after Boston brace treatment in adolescent idiopathic scoliosis.
Authors: Lange JE, Steen H, Brox JI.

Results: The magnitude of the primary prebrace major curve was in average 33.2 (range 20 – 52) degrees (n=110). At weaning after 2.9 (0.5 – 9.3) years of treatment and at the last follow-up 19.8 (12 - 28) years after weaning the corresponding values were 28.5º (9 -56) (n=110), and 34.0º (8 – 87) (n=66), respectively. Even if the average progression of the major curve after weaning was 5.5º (-7 – 44), the long time follow-up compared with the prebrace value was -0.6º (-21 – 36) (n=66).

[Ballet Mom]

It does make me wonder, with the responses to my bracing posts, if anyone posting on this forum is possibly associated with the Braist study in any way. This would make a lovely recruiting ground for the study. Anyone have any disclosing to do?