Torso Rotation Strength Training for Scoliosis

[Dingo]

difference in response

Many of you know that I talk to scientists who conduct research on Scoliosis. Some work in the USA and others work in various locations around the world.

I sent the before & after x-rays with some supporting information to a spine surgeon who also does R&D. To my surprise he replied with a page and a half response and a "thank you" for getting it to him.

The difference between that response from a top scientist and the seething anger that routinely flows from some members of this group including the Mod is striking.

[mamamax]

Yes - many of us do know that about you Dingo :-)

I'm glad you posted this. The difference in responses - obviously, based on education and professionalism.

I can find no excuse for the seething anger, and mockery displayed by a moderator and her assistant, other than ignorance. I would hope they take the time to better educate themselves and invest in a few courses to better polish their communication skills.

While the literature supports that approximately 10% of cases will resolve on their own - we have no way of knowing which child will fall into that category. When a child, such as the case you shared with us, overcomes this insidious condition, it is true cause for celebration. And not a time to rip her victory to shreds.

[Nim]

Wow! Scoliosis treatment can be such a crap shoot! This might help, then again, it may not.....This helped her, but it didn't help her.....this curve progressed, this one didn't.....and this one got better!

With that in mind......I would say, go for the torso rotation training......if ballet dancers can get great leg extension and hip turn out from working the muscles and training, beyond what you would ever think the human body is capable of, I've gotta believe consistent working of the back and core muscles just might be able to de-rotate the turning vertebrae...........At least to me, an ex-cheerleader and dancer, it makes sense, and it can't seem to hurt any, so we're going to give it a try ........

Also.....I'll share something with you I stumbled upon while researching scoliosis. I found a site set up by a woman that collected old medical journals and books as a hobby. She said she found an entry in an old medical book titled: " Scoliosis Cures and Causes, Unknown or Just Forgotten."...........She said that until doctors started to operate on scoliosis patients, medical journals listed causes and cures for scoliosis.......once they started to do operations, they did not list the causes or cures.......Makes you think, doesn't it.............

[skevimc]

Also.....I'll share something with you I stumbled upon while researching scoliosis. I found a site set up by a woman that collected old medical journals and books as a hobby. She said she found an entry in an old medical book titled: " Scoliosis Cures and Causes, Unknown or Just Forgotten."...........She said that until doctors started to operate on scoliosis patients, medical journals listed causes and cures for scoliosis.......once they started to do operations, they did not list the causes or cures.......Makes you think, doesn't it.............

That's an interesting finding. Definitely something to think about. However, I'd suggest that reason they stopped talking about the 'cure' and 'cause' of scoliosis is the realization that nothing they were doing or will do will actually 'cure' the scoliosis. It was actually fairly common for some surgeons to talk about their surgeries as "curing scoliosis". The community at large began to shift that thinking. It's the difference between a treating scoliosis and managing scoliosis.

Also the realization that, after polio, they had no idea what caused scoliosis. But this definitely feeds in to the idea that doctors want to operate on everything as a solution. And that is certainly worth thinking about.

[Pooka1]

Also the realization that, after polio, they had no idea what caused scoliosis. But this definitely feeds in to the idea that doctors want to operate on everything as a solution. And that is certainly worth thinking about.

Correct me if I'm wrong please but isn't surgery the only treatment modality to date that has shown any frank efficacy whatsoever?

Saying doctors have a bias towards surgery is another way of saying they have a bias towards evidence (as they should).

[mariaf]

I would hope that nobody is making a blanket statement that all doctors are biased towards surgery, as that would be unfair.

For example, I can't tell you how many parents I know who sought a consult for VBS and were told for one reason or another that surgery could be avoided in their child's particular case (maybe the child was almost done growing, or was tolerating bracing well and it was holding the curve, etc.)

At least in my experience - and from talking to numerous parents - doctors don't generally seem to be 'surgery happy'.

That said, if they feel that surgery is the best/only option, then of course they will recommend it - as they should.

[Pooka1]

I would hope that nobody is making a blanket statement that all doctors are biased towards surgery, as that would be unfair.

For example, I can't tell you how many parents I know who sought a consult for VBS and were told for one reason or another that surgery could be avoided in their child's particular case (maybe the child was almost done growing, or was tolerating bracing well and it was holding the curve, etc.)

At least in my experience - and from talking to numerous parents - doctors don't generally seem to be 'surgery happy'.

That said, if they feel that surgery is the best/only option, then of course they will recommend it - as they should.

I agree with this. In fact I think it is at least plausible to suggest earlier surgery in certain cases might reduce the length of fusions required. I am referring to certain connective tissue disorder cases wherein there is evidence that many/most/all(?) patients are refractory towards bracing.

If that is true then the surgeons are being too conservative when it comes to suggesting surgery for this group of patients.

There are lots of misconceptions spun up to attack the credibility and intellectual honesty of surgeons by people who are philosophically opposed to surgery. It's a form of ad hom and is unseemly.

[skevimc]

Correct me if I'm wrong please but isn't surgery the only treatment modality to date that has shown any frank efficacy whatsoever?

Saying doctors have a bias towards surgery is another way of saying they have a bias towards evidence (as they should).

Yes. In my comment I was thinking about a story Dr. Asher relayed to me that one time after a presentation he had given during the early to mid part of his career he was showing results of surgical cases and saying that he was 'curing' scoliosis. And the impression I got from him was that was a common thought amongst many surgeons, i.e. sugery was curing scoliosis. But a colleague challenged that thought and said "You say you are curing scoliosis. But you're not. You're just managing it". From that point he began to look at the way he practiced in a different way. Certainly a more realistic way, i.e. we're not curing we're managing. I was just relaying that I agree there was a literal shift in terminology and approach to scoliosis care that occurred but maybe not for the reasons some might think. Without that story my comment would definitely be out of context.

Indeed, evidence is good.

I would hope that nobody is making a blanket statement that all doctors are biased towards surgery, as that would be unfair.

At least in my experience - and from talking to numerous parents - doctors don't generally seem to be 'surgery happy'.

That said, if they feel that surgery is the best/only option, then of course they will recommend it - as they should.

To make sure I'm not misunderstood, I am definitely not applying a blanket statement. I was speaking more globally about the common thought or bias against surgeons that all they want to do is operate. The website Nim found played in to that idea, or at least could be used to support that idea (Not saying that Nim feels that way either. Just speaking in general terms.)

That being said, Western medicine has definitely shifted over the decades to a high intervention philosophy. There's always a better drug or procedure or device to try. Prevention has been ignored among several other things... But this starts a conversation that is way off topic.

There are lots of misconceptions spun up to attack the credibility and intellectual honesty of surgeons by people who are philosophically opposed to surgery. It's a form of ad hom and is unseemly.

Agreed.

[Pooka1]

Yes. In my comment I was thinking about a story Dr. Asher relayed to me that one time after a presentation he had given during the early to mid part of his career he was showing results of surgical cases and saying that he was 'curing' scoliosis. And the impression I got from him was that was a common thought amongst many surgeons, i.e. sugery was curing scoliosis. But a colleague challenged that thought and said "You say you are curing scoliosis. But you're not. You're just managing it". From that point he began to look at the way he practiced in a different way. Certainly a more realistic way, i.e. we're not curing we're managing. I was just relaying that I agree there was a literal shift in terminology and approach to scoliosis care that occurred but maybe not for the reasons some might think. Without that story my comment would definitely be out of context.

Indeed, evidence is good.

Well this has actually come up before. Our surgeon stated (twice because I asked him to repeat it) that my one daughter was back in the general population on risk for all future back problems (due mostly to where her fusion ended distally). While he did not say she was "cured," I don't know what the functional difference is between "back in the population for risk of all future back issues" and "cured." I didn't ask about the other daughter but her fusion ended at the same vertebra so I assume she is back in the pool also.

To make sure I'm not misunderstood, I am definitely not applying a blanket statement. I was speaking more globally about the common thought or bias against surgeons that all they want to do is operate. The website Nim found played in to that idea, or at least could be used to support that idea (Not saying that Nim feels that way either. Just speaking in general terms.)

My comments were not directed at you. You are a researcher trying to help and so are one of the good guys along with the surgeons.

That being said, Western medicine has definitely shifted over the decades to a high intervention philosophy. There's always a better drug or procedure or device to try. Prevention has been ignored among several other things... But this starts a conversation that is way off topic.

Prevention has been shown to be far less costly and still it isn't done in many cases. Of course prevention doesn't apply to the topic of scoliosis outside of research efforts but in general the point stands.

In the mean time, the only game is town is evidence. If you aren't evidence-driven then you might as well be singing. No offense to Singer.

[rohrer01]

To the Moderator.

An 11 year old girl (now 12) began torso rotation strength training approximately 1 year ago. Late today her mother e-mailed me the before and after x-rays. I put them together into one picture. This one is worth 1,000 words.

Before and after x-rays (1 year)

This wasn't deserving of the severe attack that it received. Honestly, Linda, would you talk to a patient or a patient's parents this way? ...Well, you just did. It was very unprofessional. You are supposed to be the moderator, not the attack starter. This was a very appropriate place to post this. No where in his post do I see that he said the device cured her scoliosis. Yes, it was implied by, "This one is worth 1,000 words." But the way it was stated was implied by an excited parent who uses, or will use in the future, this technique. I honestly believe that if this were posted by someone other than Dingo, this attack would not have occured. There is a difference between disagreeing with someone, whether they be a layperson or a scientist, and attacking them at every turn. I am very disappointed in the unprofessionalism that goes on here, and within the National Scoliosis Foundation no less.

[hdugger]

Well this has actually come up before. Our surgeon stated (twice because I asked him to repeat it) that my one daughter was back in the general population on risk for all future back problems (due mostly to where her fusion ended distally). While he did not say she was "cured," I don't know what the functional difference is between "back in the population for risk of all future back issues" and "cured." I didn't ask about the other daughter but her fusion ended at the same vertebra so I assume she is back in the pool also.

I don't think any procedure that takes a flexible part of your body and completely immobilizes it can be considered a "cure." Certainly making the spine inflexible reduces the risk of some other problems (like curve progression within the fusion), but a fusion is as far from normal as an unfused curved spine.

That's not to diss surgery or take away from your daughter's prognosis. Surgery has helped many people avoid the problems of a curved spine, but it has put us no closer to a "cure" for scoliosis than any other treatment.

[Pooka1]

I don't think any procedure that takes a flexible part of your body and completely immobilizes it can be considered a "cure."

And yet removing entire organs (appendix, kidney, etc.) cures folks.

My kids have part of their thorax fused. They tell me is very hard to tell the difference between having a fused and unfused thorax in practice. They feel normal thanks to surgery.

Certainly making the spine inflexible reduces the risk of some other problems (like curve progression within the fusion), but a fusion is as far from normal as an unfused curved spine.

So if a doctor told you a procedure returned you to the general population on risk for all future issues associated with that area of your body you would NOT consider yourself cured? What would you consider that?

[Pooka1]

I honestly believe that if this were posted by someone other than Dingo, this attack would not have occurred.

Speaking only for my self, I completely disagree.

Pseudoscience and ignorance must be opposed.

[skevimc]

I don't think any procedure that takes a flexible part of your body and completely immobilizes it can be considered a "cure." Certainly making the spine inflexible reduces the risk of some other problems (like curve progression within the fusion), but a fusion is as far from normal as an unfused curved spine.

That's not to diss surgery or take away from your daughter's prognosis. Surgery has helped many people avoid the problems of a curved spine, but it has put us no closer to a "cure" for scoliosis than any other treatment.

And yet removing entire organs (appendix, kidney, etc.) cures folks.

My kids have part of their thorax fused. They tell me is very hard to tell the difference between having a fused and unfused thorax in practice. They feel normal thanks to surgery.



So if a doctor told you a procedure returned you to the general population on risk for all future issues associated with that area of your body you would NOT consider yourself cured? What would you consider that?

I think "cure" could be a philosophical debate and would probably be different based on the disease/condition/organ... Even personal preference. I think cancer patients don't say they are 'cured' until 5 years of remission and then they are cancer survivors. I'm not sure if they'd really consider themselves 'cured', although some might. Someone with colitis who had their colon removed might be freed from the colitis but would they consider that to be cured? Someone with a scoliosis and fused spine would still have scoliosis but with reduced/absent(?) risk for progression and side effects.

Can we say something is 'cured' when we're not sure what has caused it? Does the removal of symptoms or reduction of risk factors mean a person is cured? Is the disease/condition still present but a person no longer experiences the symptoms? Interesting to think about.

[hdugger]

And yet removing entire organs (appendix, kidney, etc.) cures folks.

We're drifting into semantics. If I had cancer in my hand and it was removed, I'd be cured of the cancer. But, when people discuss a "cure" for cancer, that's not really what they mean. What they mean is more "a return to the way it was before the cancer." Before the cancer, (hypothetical) I had a hand. Before the fusion, the spine was made up of individual vertebrae. Cutting off the hand and/or fusing the spine resolved the problem at hand, but it didn't return to the way it was before the disease.

So if a doctor told you a procedure returned you to the general population on risk for all future issues associated with that area of your body you would NOT consider yourself cured? What would you consider that?

I might ask him how he knew that, given the relatively short history of this hardware and the relatively high rate of revision surgery even with this newer hardware (as cited in previous discussions). We're 40 or 50 years out from having enough evidence to offer that kind of reassurance. I certainly *hope* that his theory is correct, but I'd have no way of assessing it.