The muscular cause of scoliosis

[Bigbluefrog]

rotational therapy is that only recommended for pt with scoliosis in a certain degree or location of curve?

I only ask is because Ambrea started working out for an hour a day before her xray and it showed an increase in curves. Then we went to schroth and were told to avoid certain twisting positions and avoid heavy weights.

I was intrigued that two successful treatments were at complete disagreement.

we did see improvement with schroth and her curves were reduced to original curvature, verses the rotational therapy seemed to aggravate her curves.
(please note this was not the exact machine for RCT, but one that was similiar in design where the base or pelvic remains stable and the upper body twists with weights to 75-90 degrees in both directions.

[Pooka1]

rotational therapy is that only recommended for pt with scoliosis in a certain degree or location of curve?

I only ask is because Ambrea started working out for an hour a day before her xray and it showed an increase in curves. Then we went to schroth and were told to avoid certain twisting positions and avoid heavy weights.

I was intrigued that two successful treatments were at complete disagreement.

we did see improvement with schroth and her curves were reduced to original curvature, verses the rotational therapy seemed to aggravate her curves.
(please note this was not the exact machine for RCT, but one that was similiar in design where the base or pelvic remains stable and the upper body twists with weights to 75-90 degrees in both directions.

All scoliosis-targeted PT is probably successful at least in the short term for smaller curves. It's not relevant that different approaches are claimed to work on separate, even mutually exclusive, principles. These therapy mechanisms are all just unproven claims at this point as far as I can tell.

We have a torso rotation researcher, perhaps the only one in the world, who I hope answers your questions. Beyond this researcher's published papers, there is less than a handful of other published papers and one includes double publishing the entire dataset of another. So what looks like 32 subjects between the two papers is really just 20 subjects total (approx. numbers... can't remember exact numbers).

There is simply not enough known and certainly not enough published about torso rotation to say much about it. I realize Schroth claims people should avoid torso rotation but I doubt they have a lick of data backing up that admonition.

We have the opposite problem with Schroth which has been around ~90 years but doesn't have the publication record to show it.

[rohrer01]

Rohrer

X-rays are the first choice for diagnosis. It tells the most with the least amount of effort, and only takes a minute.

Unfortunately for some of us, finding the right surgeon can really take some time. Its not easy.

Why don’t you e-mail your x-rays to a few surgeons? That would be an easy way of getting a few opinions. If they say they can help you, you can move on to step B.
Ed

TiED,
That is exactly what I am doing. Unfortunately most of the doctors want you to come in for your second opinion and charge around $500ish, which don't get me wrong, is worth it, but I have very limited resources. Dr. Hey has a very good reputation as far as I can tell and has agreed to look at my X-rays and MRI's (just send them to him). I have travelled out of state for another surgery. If he can help me, North Carolina here I come!

Skevimc, I think your hypothesis makes perfect sense, especially with the arm illustration. My curve wasn't "caught" until it was 39* and only because I was screaming from the pain. My mom took me to a D.O. who used electric stimulation of the muscles on the convex side of the curves and he achieved about a 3* improvement that held during my most active years. The last two years, when progression started to pick up speed (I was up to 41* 10 years ago), I was under chiropractic care where I'm not sure she knew exactly what she was doing (she had good intentions) AND my daughter had a baby, so I was/am lifting him all of the time. Putting him in and out of the car seat, even when he was tiny could be excruciating at times. If I have to do it now, it causes muscle spasms galore. I try to avoid it. If I am watching him, we walk. I'd rather push the stroller than lift him into that carseat! (unavoidable at times, though). Thank you for your input.

I'm getting my X-rays on disk so maybe I can finally post them on here when the come!

[skevimc]

rotational therapy is that only recommended for pt with scoliosis in a certain degree or location of curve?

I only ask is because Ambrea started working out for an hour a day before her xray and it showed an increase in curves. Then we went to schroth and were told to avoid certain twisting positions and avoid heavy weights.

I was intrigued that two successful treatments were at complete disagreement.

we did see improvement with schroth and her curves were reduced to original curvature, verses the rotational therapy seemed to aggravate her curves.
(please note this was not the exact machine for RCT, but one that was similiar in design where the base or pelvic remains stable and the upper body twists with weights to 75-90 degrees in both directions.

Trunk rotational strength training (RST) will probably only work for curves <35°. Right now there is no indication of the type or location of curve that would work the best. In our paper I believe we state that thoraco-lumbar curves seem to respond the best and our data mostly supports that, although there was 1 TL curve that progressed and I believe she went on to receive a night time bending brace.

I'm happy to answer more questions about RST if you have them, like protocol questions or rationale. A lot of that information is posted in another thread I started a few months ago when I first came to this board. http://scoliosis.org/forum/showthread.php?t=9858

I am confident, although can't prove it scientifically, that some of the patients in our study received benefit from RST. I am also confident that some patients did not receive benefit. I can not prove that RST didn't make their curve worse although physiologically I can defend against that claim.

Bottom line.. You need to feel confident in the therapy that is chosen, for your own sanity. There is a high risk for "what if"-ing yourself to death, i.e. "what if we had tried this" or "What if we had tried that".

[Pooka1]

Dr. McIntire,

1. What is the total number of AIS patients who have been involved and made it to the journal article stage of study on torso rotation training?

I count 20 TOTAL for Mooney.

You have 15 from the one study plus I don't know how many from your other studies.

2. Is there any long term follow up on any patient involved in any of these studies? What in your opinion is an adequately long time frame to be able to make a statement as to slowing/halting progression? I know you mentioned some were known to go on to fusion so we can subtract those.

3. Do you know of any PT modality with a long term follow up? Linda continually claims that she is unaware of any. Is this the case?

Thanks.

[rohrer01]

Trunk rotational strength training (RST) will probably only work for curves <35°. Right now there is no indication of the type or location of curve that would work the best. In our paper I believe we state that thoraco-lumbar curves seem to respond the best and our data mostly supports that, although there was 1 TL curve that progressed and I believe she went on to receive a night time bending brace.

Is there any research being done, to your knowledge for unbraceable curves? At 16 years old, I was given a pretty hopeless prognosis. I had a 39* curve that could not be braced because it's location was so high on the thoracic spine. I even have compensatory curve in the cervical area. My mom didn't give up and took me to a D.O. who did electrostimulation, as I had mentioned in another thread. Is it possible to develop exercises that target curves that high in the thoracic spine? Logically, it would seem that there should be, but I have never been given any successful exercises. One exercise that I was given seemed to reduce pain when my curve was around 40*, but now that it is higher, that particular exercise just aggrivates the spasms. Swimming has always seemed to be the best as far a pain control, but not everyone has access to a regular routine of swimming (me in particular). I wish I did, for sure. My curvature restricts me from being able to do the "crawl", so I have to be creative. The breast stroke seems to work the muscles up there, but I'm not sure that it is "activating" my weak muscles to get busy. Sorry, I'm kind of rambling and asking at the same time. Sorry if this isn't your line of expertise. If you can't answer, that's okay.

[skevimc]

Dr. McIntire,

1. What is the total number of AIS patients who have been involved and made it to the journal article stage of study on torso rotation training?

I count 20 TOTAL for Mooney.

You have 15 from the one study plus I don't know how many from your other studies.

The number in Mooney's second paper (2003) is his total number, so 20, is correct.

My study had 15 reported but there were 2 additional that didn't make it to the paper. 1 was enrolled but it was determined that her primary curve was too small, i.e. <15°. The other was excluded from final analysis because she was also using a brace.

So total patients that have made it to the literature is 35.

2. Is there any long term follow up on any patient involved in any of these studies?

In our study we follow 10 out to almost a full year. 4 of those almost out to 20 months. And 2 of those out past 3 years.

The 2 patients at 3 years had no progression (>5°) and 1 reduction. The other 2 at 20 months, both had reductions.

At 12 months there were 4 with progression.

What in your opinion is an adequately long time frame to be able to make a statement as to slowing/halting progression? I know you mentioned some were known to go on to fusion so we can subtract those.

I think follow-up should be at least 3 years. But ideally, follow-up needs to be at least until skeletal maturity or around 18 years old. Certainly an argument could be made that follow-up should last a lot longer than that. But then you get into a different type of study. Long-term follow-up studies are very important, but for exercise studies they would probably be insufficiently powered to justify a decade or two of effort. It's a lot of work for no one to believe it.

3. Do you know of any PT modality with a long term follow up? Linda continually claims that she is unaware of any. Is this the case?

Thanks.

Side Shift therapy from den Boer follows 44 patients out to an average of 24 months. They also use a 120 brace patients as a control. They aren't concurrent groups but are taken from the same practice. This is the best study that I know of in terms of controls and follow-up. They show the same result as the braced group. (They also have a very nice discussion on why they think the therapy is promising and fully acknowledge that a prospective trial would need to be done.)

[skevimc]

Is there any research being done, to your knowledge for unbraceable curves? At 16 years old, I was given a pretty hopeless prognosis. I had a 39* curve that could not be braced because it's location was so high on the thoracic spine. I even have compensatory curve in the cervical area. My mom didn't give up and took me to a D.O. who did electrostimulation, as I had mentioned in another thread. Is it possible to develop exercises that target curves that high in the thoracic spine? Logically, it would seem that there should be, but I have never been given any successful exercises. One exercise that I was given seemed to reduce pain when my curve was around 40*, but now that it is higher, that particular exercise just aggrivates the spasms. Swimming has always seemed to be the best as far a pain control, but not everyone has access to a regular routine of swimming (me in particular). I wish I did, for sure. My curvature restricts me from being able to do the "crawl", so I have to be creative. The breast stroke seems to work the muscles up there, but I'm not sure that it is "activating" my weak muscles to get busy. Sorry, I'm kind of rambling and asking at the same time. Sorry if this isn't your line of expertise. If you can't answer, that's okay.

H. Weiss has several studies reporting larger curves. But I think he puts everyone in a brace anyway. Other than that, I don't think there is any legitimate research being done with larger curves. I'm sure there are some groups working with large curves, but I doubt they have any plans to report their results. However, I'm also not really in 'the field' right now, so I might not be correct about this.

Exercises targeting the high thoracic region... I've thought about this a whole lot. There were three patients I worked with that had HT compensatory curves. None of the high curves responded very well. From an exercise point of view, it seemed clear that our strength training was targeted at the mid to lower trunk and spine muscles. Something to reach the HT region would definitely be needed. I spoke with a back therapist after a talk I gave and his idea was to mess around with arm position while performing the rotations. We'd need to do a fine wire EMG study to really look at that. There's also an MRI technique that could be used to look at muscle activation. HT curves would also be hard to target because the rib cage is much stiffer that high up. Perhaps the very end points of rotation would activate those muscles. Really pulling the should back and trying to get those last few degrees of motion. I'm sure there are exercises that would reach there. The question is would they be intense enough to do anything and would the motion be appropriate to help.

We had the hypothesis that rotational exercises were effective because in order to perform a heavy rotation, the primary movers would rotate and the spinal stabilizers would function in their stabilizing role while undergoing a large amount of force. This idea is based on the assumption that the rotational component of the curve is a/the primary force of progression, as opposed to the lateral curve. Also, based on the fundamentals of neuromuscular control, i.e. our bodies learn by doing. So, training the spine to remain stable during a heavy rotational force would train specifically to counteract/stabilize the primary progressive force. Training the muscles to perform extensions or lateral bends might not 'equip' the muscles with the right function.

[rohrer01]

Exercises targeting the high thoracic region... I've thought about this a whole lot. There were three patients I worked with that had HT compensatory curves. None of the high curves responded very well. From an exercise point of view, it seemed clear that our strength training was targeted at the mid to lower trunk and spine muscles. Something to reach the HT region would definitely be needed. I spoke with a back therapist after a talk I gave and his idea was to mess around with arm position while performing the rotations. We'd need to do a fine wire EMG study to really look at that. There's also an MRI technique that could be used to look at muscle activation. HT curves would also be hard to target because the rib cage is much stiffer that high up. Perhaps the very end points of rotation would activate those muscles. Really pulling the should back and trying to get those last few degrees of motion. I'm sure there are exercises that would reach there. The question is would they be intense enough to do anything and would the motion be appropriate to help.

Thank you so very much for your response. The difficulty that you describe does not surprize me at all. The area that I highlighted are the kind of exercises that helped for pain only at around the 40* mark (I'm sure they would have helped at < 40*, too). They are useless now that I have progressed. If I can not find a surgeon willing to fix this curvature, because I believe 100% that my pain is coming from this scoliosis, then I need to do SOMETHING. Whether it is RST or whatever else I can think of that might help at least keep the symptoms under control until my spine collapses enough for surgical intervention. I personally think that my relatively "young" age will make a surgery as difficult as this one less risky than waiting until I am 50 or 60 years old. I do not understand the logic of doctors that know surgery is inevitable, yet want to put it off until the age of general health decline. I don't like being on all of these heavy drugs, but as for now I have no other options. My pain specialist wants to insert an intrathecal catheter at about the T7 level to give low dose morphine or some other drug. I don't quite understand why he wants to start so low since most of my pain is above that level. I gave PT one more try and she sent me into spasms so badly that it made me cry, and the spasms lasted all day. I'm just at my witts end. I would even be willing to participate in a study for larger curves. I live in Wisconsin if you know of anything you can PM me. Maybe there aren't that many studies for HT curves because they are so rare. I have only seen one doctor out of ALL the scoli docs that has seen a curve pattern similar to mine. Desperation is taking hold. My husband and I have been trying for a baby and have had four miscarriages (prior to progression... I haven't been pregnant in two years despite fertility treatments). I don't know if it's due to the NSAIDS I was on (which I am no longer allowed to take for fear of kidney damage because of such long term use) or genetics or simple age. But my agenda for life isn't to sit back and let the drugs slowly kill me off or destroy my mind (which I have seen them do to a friend of mine that refused back surgery until she became inoperable). People like me with HT curves are in a heap of misery. I don't care what "they" say, these curves are very painful because they affect the neck and your ability to turn your head or drink from a cup without a straw, etc. and cause muscle spasms under the scapula and in the intercostal muscles, making it difficult to breathe at times. I can look in the mirror and straighten out my arms parallel to the floor, one at a time, and actually see the scapulas cross over the spine! Thank you for being humble enough to look at and address the concerns of people on this forum. You are a rare breed indeed. Please don't let "them" ruin you. We need people like you in healthcare/research and badly!
Sincerely,
Rebecca

[Pooka1]

Thank you so very much for your response. The difficulty that you describe does not surprize me at all. The area that I highlighted are the kind of exercises that helped for pain only at around the 40* mark (I'm sure they would have helped at < 40*, too). They are useless now that I have progressed. If I can not find a surgeon willing to fix this curvature, because I believe 100% that my pain is coming from this scoliosis, then I need to do SOMETHING. Whether it is RST or whatever else I can think of that might help at least keep the symptoms under control until my spine collapses enough for surgical intervention. I personally think that my relatively "young" age will make a surgery as difficult as this one less risky than waiting until I am 50 or 60 years old. I do not understand the logic of doctors that know surgery is inevitable, yet want to put it off until the age of general health decline. I don't like being on all of these heavy drugs, but as for now I have no other options. My pain specialist wants to insert an intrathecal catheter at about the T7 level to give low dose morphine or some other drug. I don't quite understand why he wants to start so low since most of my pain is above that level. I gave PT one more try and she sent me into spasms so badly that it made me cry, and the spasms lasted all day. I'm just at my witts end. I would even be willing to participate in a study for larger curves. I live in Wisconsin if you know of anything you can PM me. Maybe there aren't that many studies for HT curves because they are so rare. I have only seen one doctor out of ALL the scoli docs that has seen a curve pattern similar to mine. Desperation is taking hold. My husband and I have been trying for a baby and have had four miscarriages (prior to progression... I haven't been pregnant in two years despite fertility treatments). I don't know if it's due to the NSAIDS I was on (which I am no longer allowed to take for fear of kidney damage because of such long term use) or genetics or simple age. But my agenda for life isn't to sit back and let the drugs slowly kill me off or destroy my mind (which I have seen them do to a friend of mine that refused back surgery until she became inoperable). People like me with HT curves are in a heap of misery. I don't care what "they" say, these curves are very painful because they affect the neck and your ability to turn your head or drink from a cup without a straw, etc. and cause muscle spasms under the scapula and in the intercostal muscles, making it difficult to breathe at times. I can look in the mirror and straighten out my arms parallel to the floor, one at a time, and actually see the scapulas cross over the spine!

Wow that description is very, descriptive. I can't understand why they can't help you with whatever is causing your pain, scoliosis or not. I understand the anatomy and them telling you the curve affects certain nerves and not others but that is no excuse not to help you! If there is no conservative treatment that helps you then they have to consider surgery unless they have a bad track record with surgery on HT curves. Is that the case? I think there almost certainly is some surgeon somewhere who has a decent track record on these curves, no? Linda???

Thank you for being humble enough to look at and address the concerns of people on this forum. You are a rare breed indeed. Please don't let "them" ruin you. We need people like you in healthcare/research and badly!
Sincerely,
Rebecca

McIntire is certainly unusual. We are lucky to have him.

[skevimc]

Thank you for being humble enough to look at and address the concerns of people on this forum. You are a rare breed indeed. Please don't let "them" ruin you. We need people like you in healthcare/research and badly!
Sincerely,
Rebecca

McIntire is certainly unusual. We are lucky to have him.

Thank you for the kind words. Science and rehab are both a genuine passion of mine.

I have information, you all have questions. I get to feel smart and hear myself talk and hopefully you all feel a little more at peace or at least a little more informed. It's a reciprocal relationship.

A favorite quote of mine: "Be the change you want to see in the World." - Gandhi. Not to be overly dramatic on an internet web forum, but I know what it's like to be a patient facing some very tough decisions. The thing I wanted most of all during that time was an honest opinion from someone "in the know". It can really get to be too much with so much information floating around. It's hard to know what to think. Gaining some perspective can be a very powerful thing. Even if it's not the answer you were hoping for.

[Dingo]

link dead

Does anyone have a link to the Spanish study?

The link in the first post in this thread is dead.