Exercise helps patients with MS and Schizophrenia

[Pooka1]

All of that being said... I have no idea how organizations/websites should word their statement on exercise. I guess including a statement mentioning groups like SOSORT and the effort to study the effectiveness of conservative treatments, including a strong focus on exercise based therapies, would go a long way to begin changing the way clinicians view exercise, i.e. It's an ongoing question not an absolute certainty. I would definitely like to see a more proactive statement concerning exercise from the research societies, SRS, IRSSD, NSF(??). If the response to the question "will exercise training help my curve?" became "There aren't any well controlled studies to show that exercise therapies will affect curve progression. However, there are a number of groups that are actively studying this." To me, this would be a huge victory.

Just my $.02

That seems fair. I think they should adopt that statement or something like it.

But someone is first going to have to formally apologize for Schroth for being around ~90 years and still not having any evidence of efficacy. It's all downhill after that.

[skevimc]

The survivorship (progress less than 6*) for ice cream therapy at 8 months for 15 patients with the same curves as in that study given the average rate of progression is probably 100% (or more).

If these kids were not in a growth spurt there is no a priori reason to think their curves would get worse during any 8 month period even doing nothing. My one kid had one documented 6 month period out of brace where her curve did not move and she didn't do a lick of PT much less targeted PT. She would have been counted as a "survivor" yet she didn't do any treatment whatsoever.

Control groups, a sense of the natural history of scoliosis, and a sense of proportion... more than just good ideas.

To clarify and address some of these points... Several of the girls were in a growth spurt and two of them were probably at peak height velocity. Growth/height did not dictate success or failure.

We compared our survivorship analysis to that of the Nachemson and Peterson brace study. They had an observation group, an e-stim group and a brace group. We just plugged our data into their graph and compared. It certainly has its weaknesses. But I think we generally believe the result. Especially since after 8 months our survivorship drops and follows the reported natural history line. So basically, once treatment stopped, everything went back to the way it was. Take that as you will.

That seems fair. I think they should adopt that statement or something like it.

But someone is first going to have to formally apologize for Schroth for being around ~90 years and still not having any evidence of efficacy. It's all downhill after that.

I'm with you on that one. They have the patients. The staff. The money. The know-how. For some reason they just lack the desire to do a controlled trial. I remember when I toured the facility I was looking at the number of patients and thinking... if I had my equipment I could finish my dissertation in a week.

[Dingo]

Statement from conclusion

Skevimc

Treatment of adolescent idiopathic scoliosis with quantified trunk rotational strength training: a pilot study.

CONCLUSIONS: Quantified trunk rotational strength training significantly increased strength. It was not effective for curves measuring 50 to 60 degrees. It appeared to help stabilize curves in the 20 to 40-degree ranges for 8 months, but not for 24 months. Periodic additional supervised strength training may help the technique to remain effective, although additional experimentation will be necessary

Can I just add that those are the 5 most unfortunate words in the history of Scoliosis research.

People who haven't read your study have used that phrase on this board to argue that TRS only works for a few months. Most people don't take the time to read the study and learn that TRS therapy lasted just 4 short months.

I must admit that when I was scanning abstracts my stomach fell when I read that. I thought it was proof that TRS was only short term. Months later I read the actual study and realized the point you were making.

[Dingo]

Wow!

Skevimc

Growth/height did not dictate success or failure.

That is outstanding!

[Dingo]

Vert Mooney study

This is a link to the original Vert Mooney study on TRS

The Role of Measured Resistance Exercises in Adolescent Scoliosis

Out of 20 kids
16 experienced a curve reduction
3 were stable
1 child with a 60 degree curve experienced progression

Has there ever been a credible (or uncredible) brace study that produced such amazing results? What about VBS? Nope.

The fact that Dr. Mooney discovered a way to treat Scoliosis is great news for parents like me. But this study also told researchers something important about the nature of Scoliosis.

[Pooka1]

To clarify and address some of these points... Several of the girls were in a growth spurt and two of them were probably at peak height velocity. Growth/height did not dictate success or failure.

We compared our survivorship analysis to that of the Nachemson and Peterson brace study. They had an observation group, an e-stim group and a brace group. We just plugged our data into their graph and compared. It certainly has its weaknesses. But I think we generally believe the result. Especially since after 8 months our survivorship drops and follows the reported natural history line. So basically, once treatment stopped, everything went back to the way it was. Take that as you will.

Okay that is defensible in my little opinion.

So did any of the compliant patients achieve a permanent reduction or halting of their curve if they continued TRS until their growth was complete? Or do these patients have to do it the rest of their lives to maintain the reduction/stability?

What did Mooney say about that if you know? We already know you disagree with him about bracing being obviously unnecessary during the growth spurt.

[skevimc]

Is there any credible (or uncredible) brace study that produced such amazing results? What about VBS? Nope.

The fact that Dr. Mooney discovered a way to treat Scoliosis is great news for parents like me. But this study also told researchers something important about the nature of Scoliosis.

Just for clarity, that is his second article not the first. The first had 12 subjects and four regressed, and 1 >60 progressed. The rest stayed stable during the treatment window ~4-6 months.

Regardless, his work is what got Dr. Asher excited and spawned our subsequent project (and allowed me to get my PhD). But I wouldn't compare that preliminary work with the long-term studies done on bracing. Even those studies have several weaknesses. Those preliminary studies are just that. Preliminary. I was very disappointed that the second paper was so thin. Repeating the same data (which is big no-no) unless you report further follow-up, was a missed opportunity, IMO.

Okay that is defensible in my little opinion.

So did any of the compliant patients achieve a permanent reduction or halting of their curve if they continued TRS until their growth was complete? Or do these patients have to do it the rest of their lives to maintain the reduction/stability?

What did Mooney say about that if you know? We already know you disagree with him about bracing being obviously unnecessary during the growth spurt.

Nobody that I know of continued TRS until maturity. The one or two patients that I think probably did continue, I'm not sure what their status is. Basically, I know very little about any of them aside from what we published. I contacted Dr. Asher a few months ago and asked about doing a follow-up study or contacting the patients to get an update. He's curious as well. I doubt we could publish on anything, but it would be nice to know.

I can't find anything that Mooney says regarding the long-term necessity for exercise.

[rohrer01]

Do a study on us "older" folks with larger progressvie HT curves that doctors refuse to operate on, even though it is inevitable and they just want to "wait" until your health fails to do the surgery. I am beginning to hate the word "wait"! Let me participate, that way I can feel like I'm at least doing something while I am being miserable! JK

Sorry, I'm feeling a little catty.

So frustrated with the dead ends I keep running up against. It seems that all the exercise that I do now just aggrivates my already painful muscle spasms. I'd bet you could pierce me through with those EMG wires and crank up the juice and I wouldn't feel a thing. Then you could take a picture and say I was a true case of dystonia with scoliosis! I know, it's not funny, really. I just have to keep a sense of humor (even if it is a little demented!) to keep myself going!

[rohrer01]

I guess it's time for me to TRY to get some sleep! My brain feels like it's been on the same train as jrnyc!

[jrnyc]

hey rohr
thought i saw you on that train...Amtrak # 98

when you reach your point of pain...where exercise just adds to the pain....you have come to the research point of ...schmexercise!!

[Pooka1]

Just for clarity, that is his second article not the first. The first had 12 subjects and four regressed, and 1 >60 progressed. The rest stayed stable during the treatment window ~4-6 months.

Did any of these exercise to maturity?

What is your personal feeling about needing to exercise only to the point of maturity or the rest of a person's life with TRS?

Regardless, his work is what got Dr. Asher excited and spawned our subsequent project (and allowed me to get my PhD). But I wouldn't compare that preliminary work with the long-term studies done on bracing. Even those studies have several weaknesses.

To say the bracing studies merely had weaknesses is an understatement in my little opinion. I don't think they can conclude anything relevant in principle due to the limitations of medical studies in general. Not being able to control the studies is a reason but it isn't an excuse. It isn't even a reason in my field where you can't publish an uncontrolled study. Given that, it should not be jaw-dropping when we see a paper explaining why most published research results are false.

Those preliminary studies are just that. Preliminary. I was very disappointed that the second paper was so thin. Repeating the same data (which is big no-no) unless you report further follow-up, was a missed opportunity, IMO.

Since Mooney was well established in his field, perhaps we can conclude he didn't double-publish data to bolster his C.V.. So there must be another reason. Perhaps he didn't have follow up or just didn't like the follow up he had in hand. When the majority of data in a second paper has already been published 3 years earlier, a suitable time for follow up, perhaps we can draw our own conclusions about the long term for that set of 20 patients.

But I find it beyond interesting that he simply started with 8 more new patients and then combined those data with the data from the 12 from 3 years earlier. That is a result in itself.

It's possible that you just can't get people to exercise even to possibly avoid fusion. That is an important conclusion if true.

Nobody that I know of continued TRS until maturity. The one or two patients that I think probably did continue, I'm not sure what their status is. Basically, I know very little about any of them aside from what we published. I contacted Dr. Asher a few months ago and asked about doing a follow-up study or contacting the patients to get an update. He's curious as well. I doubt we could publish on anything, but it would be nice to know.

I can't find anything that Mooney says regarding the long-term necessity for exercise.

Do you consider the situation at maturity with these TRS patients to be the $64,000 question as opposed to, oh let's say, what is happening at the 8 month mark? Is the situation at 8-months necessarily dispositive of anything given you have some data for 24 months? Is there anything harder than explaining science to lay people?

[skevimc]

Did any of these exercise to maturity?

What is your personal feeling about needing to exercise only to the point of maturity or the rest of a person's life with TRS?

He didn't report any follow-up so I'm not sure how long they continued. I think I have heard through various sources that they claim that the initial strengthening period is all that is necessary. But I might be wrong about that.

My opinion is that, assuming TRS works, that using the strength training machines to increase strength and stability and then using a home-ex program the rest of the time with strength checks during doctor's visits until skeletal maturity. Switching back to supervised strengthening if asymmetry develops again.

I think stopping exercise at skeletal maturity would have a similar effect as stopping the brace at skeletal maturity. Some would probably progress some won't. I would hypothesize that the need to be aggressive with strengthen wouldn't be as necessary after skeletal maturity mainly because the progression is much slower. But the spine would still have altered biomechanics which could theoretically affect spinal stability. Better safe than sorry.

To say the bracing studies merely had weaknesses is an understatement in my little opinion.

Indeed. I was just responding to Dingo's remark about no bracing or VBS studies matching Mooney's results.

Since Mooney was well established in his field, perhaps we can conclude he didn't double-publish data to bolster his C.V.. So there must be another reason. Perhaps he didn't have follow up or just didn't like the follow up he had in hand. When the majority of data in a second paper has already been published 3 years earlier, a suitable time for follow up, perhaps we can draw our own conclusions about the long term for that set of 20 patients.

But I find it beyond interesting that he simply started with 8 more new patients and then combined those data with the data from the 12 from 3 years earlier. That is a result in itself.

It's possible that you just can't get people to exercise even to possibly avoid fusion. That is an important conclusion if true.

I found it interesting that I spoke to him in 2002 to discuss his protocol and say that we were starting our own project. He was nice and glad that someone was continuing with the work but couldn't answer my specific questions about the training. Then a few months later I see his 2003 work. After the conclusion of our study, we sent the abstract to Mooney to get his input (Dr. Asher had a lot of respect for V Mooney and knew him for many years). Since our study wasn't reporting 100% effectiveness he suggested that our training protocol was too different and a few other comments that didn't make much sense. Shortly after that, Med-X began marketing the rotational machine as a scoliosis treatment.

Certainly conceivable that this stuff was already in the works. The time line is certainly interesting though.

It is still being marketed. But now that I have my appointment at Stanford, this is the quote: http://www.fitstrength.com/Non%20Sur...0Treatment.htm

In 2008 several studies from Stanford have also validated that Rotational Exercise prevents the increase in curvature of the spine in Adolescent Scoliosis.

I've asked them to remove Stanford's name from the website because the studies weren't done at Stanford. I suppose I'll have to ask again.

Things get ugly and motives get questioned when money becomes a motivator. I hate it. It actually encourages me to work hard on a home program using theraband.

[Dingo]

YouTube

Skevimc

It actually encourages me to work hard on a home program using theraband.

Film the "at home" exercise and put it on YouTube. Maybe link back to a simple webpage with supplementary information.

Tens of thousands of patients will see it around the world. Home run!

[Pooka1]

I found it interesting that I spoke to him in 2002 to discuss his protocol and say that we were starting our own project. He was nice and glad that someone was continuing with the work but couldn't answer my specific questions about the training. Then a few months later I see his 2003 work. After the conclusion of our study, we sent the abstract to Mooney to get his input (Dr. Asher had a lot of respect for V Mooney and knew him for many years). Since our study wasn't reporting 100% effectiveness he suggested that our training protocol was too different and a few other comments that didn't make much sense. Shortly after that, Med-X began marketing the rotational machine as a scoliosis treatment.

Certainly conceivable that this stuff was already in the works. The time line is certainly interesting though.

You're not kidding. That is extremely interesting.

It is still being marketed. But now that I have my appointment at Stanford, this is the quote: http://www.fitstrength.com/Non%20Sur...0Treatment.htm

I've asked them to remove Stanford's name from the website because the studies weren't done at Stanford. I suppose I'll have to ask again.

Things get ugly and motives get questioned when money becomes a motivator. I hate it. It actually encourages me to work hard on a home program using theraband.

Wow I think the Better Business Bureau might want to know about all the false claims on that page. That's outrageous!

[dailystrength]

But inspite of that many people (including doctors) flat out reject exercise for Scoliosis. On my son's first visit to a spine specialist/surgeon I asked him if exercise would help and his answer was unequivocal. He shook his head and said, "exercise has no impact on Scoliosis."

No doubt there are probably many doctors who would say the same about exercise and Multiple Sclerosis.

Just for the record, my Dr. said I had made improvement in the curve based on my exercising. He commented that the muscles hold the spine.