Torso Rotation Strength Training for Scoliosis

[tonibunny]

Dingo, do you think that IIS and JIS might have the same basic causes as AIS?

I'm interested in this as I had IIS myself. The theory regarding muscle strength imbalance sounds plausible to me, but the balance theory doesn't so much because I developed scoliosis as a baby long before I had even begun to sit up.

In my case it's beginning to look as though my scoliosis is due to Ehlers-Danlos Syndrome though, so perhaps it isn't IIS at all! The number of people I know who have joint hypermobility and scoliosis makes me think that connective tissue laxity could at least be a contributing factor in many cases.

[hdugger]

Hi Dingo,

Not to make extra work for you, but have you thought about extracting your posts out of this thread and posting them in a blog? That would make it easier for those who are interested in the research you dig up to search and scan for specific information, and would also make it easier for others with similar interests to find you on the net.

Blog hosting has become very cheap. I run one from downtownhost.com for $5.95 a month. It gives you full control on your content (as well as moderation rights).

BTW, I think your threads on this forum are very valuable and I hope that you continue posting.

[txmarinemom]

In my case it's beginning to look as though my scoliosis is due to Ehlers-Danlos Syndrome though, so perhaps it isn't IIS at all! The number of people I know who have joint hypermobility and scoliosis makes me think that connective tissue laxity could at least be a contributing factor in many cases.

Tonibunny,

Aren't Marfans and other CTDs already linked to scoliosis? Did I miss what you were saying/asking?

Regards,
Pam

[tonibunny]

Yes they are, of course. Not everyone with IS has joint hypermobility, but I do think that a lot of cases could be classified as being down to connective tissue disorders rather than muscle strength imbalance or vestibular balance problems, if you see what I mean?

I haven't been formally diagnosed with EDS yet though. I've always been flexible, and I have various other symptoms (thin skin, easy bruising etc) but no-one ever picked it up. Over the past few years though I have developed Postural Orthostatic Tachycardia, which many people with EDS have, and my cardiologist feels that I probably have it. He's not allowed to diagnose this though as it isn't his area of expertise, so I have been referred to a rheumatologist who I'm waiting to see for a formal diagnosis.

If I do have EDS then the fact I developed scoliosis before sitting up and gravity having an effect won't be relevant, whereas if I do have true idiopathic scoliosis then I think it's interesting to point out

[Karen Ocker]

What worries me

There is a wealth of personal experience on this forum regarding non-operative and operative management of scoliosis. I myself found the right answer for me by listening to what others experienced and then made my own choices. True, being a medical professional myself was an advantage.

It seems, whenever someone shares a disappointing result from non-operative management be it bracing, chiro, PT, exercises etc. and then share this, some people find this untenable. I see a pattern of trying to re-invent the wheel without the proper tools. Because the Internet has become a venue for the unscrupulous practitioner many hopeful, scared parents and scoliosis sufferers fall prey to ineffective methods. Thousands of dollars are spent on therapies such as Clear. Several members have had their curves worsen following such treatment and any improvements have not been shown to last.

When a person posts their own experience those are the facts of that case.[
B]What worries me is posting conjecture as fact[/B].

[hdugger]

Another possible factor for IIS

I don't know if it's already been discussed here, but Martha Hawes draws a link between sleeping position in babies and IIS - specifically in babies sleeping on their back with their head mostly turned to one side.

[txmarinemom]

Hi Dingo,

Not to make extra work for you, but have you thought about extracting your posts out of this thread and posting them in a blog? That would make it easier for those who are interested in the research you dig up to search and scan for specific information, and would also make it easier for others with similar interests to find you on the net.

Blog hosting has become very cheap. I run one from downtownhost.com for $5.95 a month. It gives you full control on your content (as well as moderation rights).

BTW, I think your threads on this forum are very valuable and I hope that you continue posting.

Good suggestion, hdugger, and I awesome post about the perception of a 1,000 sq. ft. apartment - and here. Your point of view is understood, and thanks for presenting it the way you did.

I'll try to keep it in mind when I post: Maybe I should start a debunking blog (at the very least a disputing blog) for stuff posted here that lacks evidence.

As a parent, I can appreciate what you said about alternatives to surgery for your son. If I've ever sounded like I think fusion is the preferred route, I haven't expressed myself well. Believe me when I say I never asked for this, but I'm SO glad it was available.

For what it's worth, I really do have good intentions. Although I speak for myself, maybe some of the other adults treated for scoli as kids feel similar: It's tough going through what we did, and seeing all the bogus treatments out there ... knowing how crushing it is to put your faith (and savings) into something, with no result. Yes, ultimately people have to decide on their own, but how do you keep the focus on "this is not proven" ... "this is not accurate"?

How to keep the nuts from being the trusted voice because they insist on having the loudest voice and the last say?

I look forward to hearing your suggestions.

Regards,
Pam

P.S. ... is there some advantage in using a paid blog host vs. blogspot?

[tonibunny]

I don't know if it's already been discussed here, but Martha Hawes draws a link between sleeping position in babies and IIS - specifically in babies sleeping on their back with their head mostly turned to one side.

I've read that too; it used to be thought that this was the reason that there are more cases of IIS in European countries than in the US. More recently they think that genetics is more likely to be responsible though, with kids of Caucasian/Celtic ancestry being affected more than others.

If IIS was caused by sleeping position alone, I would have thought that more babies would be affected, and I'm not sure how you'd account for double curves.

Dingo - sorry that your thread has gone off topic so much!

[mamamax]

I don't know if it's already been discussed here, but Martha Hawes draws a link between sleeping position in babies and IIS - specifically in babies sleeping on their back with their head mostly turned to one side.

I have her book also hdugger - and read that. She makes a good case.

Do you have a copy of her memoir - Unwinding?

[hdugger]

Thank you so much for this post, Pam. It really means alot.

The bogus treatments make me furious, as well. I try to give all sides room, but I honestly do think that the whole Clear thing is a crock. I wouldn't fight someone who was taking the treatment, but I'd certainly put up a good battle if one of the practitioners came in here. If someone wants to prove me wrong on this, I'll listen, but the whole thing does scream "snake oil" to me.

But the exercise stuff . . . I just don't know. Clearly, they've been able to show that exercise can reverse a significant curve (something between 30 and 60 degrees). You don't need a control group to show that, because scoliosis curves of that size *never* spontaneously resolve themselves. So, a study of 1 is plenty big enough.

What I have not seen, though, is exercise holding a curve (with the exception of Martha Hawes and the woman who does Yoga for Scoliosis). But, again, I don't know why that is. Is the problem that people cannot continue to follow the exercise regime? If so, what if it were a simple regime, like the Torso Rotation stuff? I don't know. I'm not the one with scoliosis, and my son is now too distracted with all this girl stuff to want to run experiments for me.

Is the problem that no one has run a study long enough? That would be easy to resolve, if so.

Or, is the problem that, no matter what you do, there's some kind of muscle/bone memory that returns things to the way they were? Again, I don't know, and I simply have not seen evidence on either side which would help to illuminate the issue.

On the paid blog stuff - I worked for many years for a software company that developed and hosted discussion forums and blogs, and there are always issues that arise if you're posting on a space that someone else "owns." The site can suddenly shut down, or change rules, or decide to remove your posts. OTOH, if you own it, you have total control of your work - you can easily make backup copies, you can take all of your content and go somewhere else with it. If you've spent time creating something of value, it's worthwhile to spend the few bucks a month to safeguard it.

[txmarinemom]

On the paid blog stuff ... (snip) ... If you've spent time creating something of value, it's worthwhile to spend the few bucks a month to safeguard it.

Although I'm currently going to school to be a massage therapist (focusing on pain management for pre-ops and post-ops), I've been an application/database developer for almost 20 years.

... I just assumed it was a given *everyone* did backups - LOL!

Pam

[hdugger]

Sorry, I realize I missed your question here.

I hate to keep pointing to the SSO folk as some shining light, but they really do a fantastic job at this stuff. They're likely a little friendly army, surrounding the newcomer with all these very polite and helpful questions until the poor soul just kind of drowns under the onslaught.

If you search over there on Scenar (I think that's the right spelling) you should get a good sense of how they work. First, Mark cornered them with these "clarifying questions." Then, he grouped all their posts into one place. Then, a few more of them circled around and asked questions. One poster sounded like they *might* be "real" - and so that one was let loose a little and they focussed on the other. And finally, Toni, in a brilliant move, figured out that one of the posters' names was the same as one of the women who worked for the Scenar company and she very politely asked for some clarification. And they haven't been seen, not hide nor hair, since.

It was just a wonderful performance all around. And they did it without drawing a single drop of blood. If, at any point, they had decided that the invader was "safe," they would have been released into the general population without having a hair ruffled.

How to keep the nuts from being the trusted voice because they insist on having the loudest voice and the last say?

[Pooka1]

I'm not shooting, and I don't have a dog in this fight. I have a son with a big thoracic curve who will likely require surgery unless there's something better. I'm guessing "surgery" is more likely then "something better," but I owe it to my son to explore if there's any way he can maintain a "normal" spine without being permanently disfigured. Again, pardon but the language, but I do need to emphasize how strongly I feel about it.

Don't worry about language. Focus on ideas... recall that Eleanor Roosevelt said, "Great minds discuss ideas, average minds discuss events, small minds discuss people."

And as with both my daughters, there was no "normal" spine to maintain once they developed scoliosis. Then it's a whole new ballgame concerned entirely with cutting losses.

But the *volume* of your posts is neither message or messenger. It's just a distraction. And it makes it very difficult for the rest of us to hear each other over the din.

Okay I'll ratchet down the volume.

Getting back to the general problem, the list so far includes:

1. form
2. substance
3. metadiscussion
4. volume

In the wise words from Sesame Street... Which one here is not like the others?

[Pooka1]

B) I'm a bad father, misguided or scientifically ignorant.

If you are going to essentially equate not having an MD/PhD in scoliosis research with being a bad parent then we are all bad parents.

I think this is the crux of the problem as far as I can tell.

You are not a bad parent just because you are not a MD/PhD researcher in scoliosis.

[Dingo]

Iis jis

Tonibunny

Dingo, do you think that IIS and JIS might have the same basic causes as AIS?

I think that IIS and JIS are very different diseases. Many cases of IIS will resolve themselves completely by skeletal maturity. JIS cases tend to be the exact opposite. In one study of 205 patients with JIS nearly 50% ended in fusion. (Source)

This tells me that IIS is probably the result of some sort of health problem during pregnancy. Once the child is born the body attempts to repair the damage and much of the time it's succesful. In JIS something is messed up in the child so the problem slowly (or rapidly) gets worse over time.

I will say this about infantile Scoliosis. If OPN is involved in IIS (and I'm not sure that it is) I wouldn't rule out an infection during pregnancy as the cause. The reason is that OPN levels rise during infection. (Source) There is plenty of precedent for this type of hypothesis. Herpes infection during pregnancy is a known cause of Cerebral Palsy and premature birth.

Herpes Virus Link To Preterm Birth And High Blood Pressure During Pregnancy

The research discovered the presence of viral nucleic acid in heel-prick blood samples from 1326 newborn babies, taken over a 10-year period. More than 400 of these babies were diagnosed with cerebral palsy.

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I'm interested in this as I had IIS myself. The theory regarding muscle strength imbalance sounds plausible to me, but the balance theory doesn't so much because I developed scoliosis as a baby long before I had even begun to sit up.

Crazy as it may sound the balance theory may be more applicable to IIS than JIS or AIS. This is from the frog study.

Lack of limb proprioceptive signals in an aquatic environment is thus the element, which links the Xenopus model with human scoliosis because a comparable situation occurs during gestation in utero.

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I used to be more interested in balance but then I read Dr. Moreau's OPN patent. It changed my mind and I began to believe that OPN was probably messing up balance at the same time it was messing up the spine. Although both systems were damaged at the same time they probably weren't connected. But then the frog study came out and who knows... maybe OPN is messing up balance which in turn causes the muscle asymmetry that leads to Scoliosis. I bet we'll know in the next few years.