PDA

View Full Version : The muscular cause of scoliosis



flerc
05-10-2010, 09:28 AM
Recently, also spain doctors with another conclusion about the scoliosis cause. They corroborated with a significant proof with people with curves over 40į, that muscles donít work in a normal way. They think that it suggest that a muscular pathology could be the cause. Could it be because dystonia?

http://www.redaccionmedica.es/autonomias/noticia.php?autonomia=catalunya&4b4bd3db12d0f473c6ec0a=ESTUDIO%20DEL%20HOSPITAL%20 DEL%20MAR-IMIM&4bd3db12d0f473c=2010-03-23%2017:52:24&9c6a011fff4b4bd3db12d0f473c6ec0a&t=1197&4bd3db12d0f473c6edfbr5dhbxxzzwemut56=36841&4bd3db12d0f473c6efdbxmtyd5ydfhetr=

Sorry is Spanish. I could translate what you could not understand.

Pooka1
05-10-2010, 09:31 AM
Recently, also spain doctors with another conclusion about the scoliosis cause. They corroborated with a significant proof with people with curves over 40į, that muscles donít work in a normal way. They think that it suggest that a muscular pathology could be the cause. Could it be because dystonia?

http://www.redaccionmedica.es/autonomias/noticia.php?autonomia=catalunya&4b4bd3db12d0f473c6ec0a=ESTUDIO%20DEL%20HOSPITAL%20 DEL%20MAR-IMIM&4bd3db12d0f473c=2010-03-23%2017:52:24&9c6a011fff4b4bd3db12d0f473c6ec0a&t=1197&4bd3db12d0f473c6edfbr5dhbxxzzwemut56=36841&4bd3db12d0f473c6efdbxmtyd5ydfhetr=

Sorry is Spanish. I could translate what you could not understand.

I did not read the paper but how do they know that muscles not working normally is an EFFECT of a large curve instead of a CAUSE?

Also, we need your opinion on the post about "SET." :)

flerc
05-10-2010, 10:02 AM
The conclusion reached is that the cause of these patients, usually girls, can not exercise is that your muscles do not function normally and not vice versa as it seemed so far. This finding will help in the investigation of the causes of this disease and to better target the treatment of the patient.

The recent discovery reformulates it: muscle involvement is not the result of no training due to the deformity of the spine, but muscle involvement may be the real cause of the scoliosis itself. Therefore, the hypothesis resulting from this study is that there may be a general involvement of the whole organism, which causes a decompensation of spinal muscular symmetry and, therefore, the deformity of the spine.

It was thought that in adolescent idiopathic scoliosis presented respiratory problems caused by the deformity that had acquired the rib cage with curvature of the spine and because of this deformity, physical deterioration was experienced due to lack of training. The recent discovery reformulates it: muscle involvement is not the result of no training due to the deformity of the spine, but muscle involvement may be the real cause of the scoliosis itself. Therefore, the hypothesis resulting from this study is that there may be a general involvement of the whole organism, which causes a decompensation of spinal muscular symmetry and, therefore, the deformity of the spine.


translation done by http://translate.google.com/# (it is much better than me)

Interesting post of Set. Iíll give my opinion soon

Regards

titaniumed
05-10-2010, 12:22 PM
Spanish to English translationShow romanization

STUDY OF HOSPITAL DEL MAR-IMIM
The cause of scoliosis in adolescents might be a muscle disease

Updated: 23/03/2010 - 17:52 H
This finding explains the causes of this disease and its treatment restates

Editorial. Barcelona
Researchers from the Services of Pneumology and Orthopaedic Surgery, Hospital del Mar and Hospital Vall d'Hebron, together with the IMIM and CIBER (Center for Biomedical Integrated Network - Lung Disease), have recently published a study in European Respiratory Journal in which they present as a possible cause of scoliosis starting in adolescence primarily muscle involvement. The conclusion reached is that the cause of these patients, usually girls, can not exercise is that your muscles do not function normally and not vice versa as it seemed so far. This finding will help in the investigation of the causes of this disease and to better target the treatment of the patient.

It was thought that in adolescent idiopathic scoliosis presented respiratory problems caused by the deformity that had acquired the rib cage with curvature of the spine and because of this deformity, physical deterioration was experienced due to lack of training. The recent discovery reformulates it: muscle involvement is not the result of no training due to the deformity of the spine, but muscle involvement may be the real cause of the scoliosis itself. Therefore, the hypothesis resulting from this study is that there may be a general involvement of the whole organism, which causes a decompensation of spinal muscular symmetry and, therefore, the deformity of the spine.

Scoliosis is defined as a deformation and lateral curvature of the spine that affects the breathing and movement. Complication involves the deformation of the rib cage, back pain, difficulty breathing and an inability to exercise. The current treatment of this disease is based on orthopedic support, rehabilitation or may even need surgery depending on the degree of curvature of the spine.

Although there are cases where this condition is associated with neuromuscular diseases or connective tissue, 70 percent of cases are idiopathic, ie with no known cause to this day. Adolescent idiopathic scoliosis occurs in patients aged 11 years of age. It is estimated that between two and three percent of adolescents have some form of scoliosis, and six out of seven patients are female.

The question that arose in this project was what the real medical cause that prevents patients with scoliosis can easily exercise: the respiratory or muscular involvement? The two types of involvement are often present in this disease but what is the relationship between the two? To find out, we observed the function and exercise capacity of the lungs, respiratory muscles and limbs.

In the analysis of the data, was that the degree of involvement of the breathing was very mild and not all patients had such involvement. However, muscle involvement was a general symptom, which greatly influenced the ability to exercise.

In the study, we measured the muscle function of the arms and legs and respiratory muscles and breathing capacity and exercise in 60 patients with adolescent idiopathic sclerosis with a steep angle of curvature (greater than 40 per cent), as well as 25 healthy controls. In these patients, previously ruled the existence of muscular and respiratory problems not associated with scoliosis. An attempt to correlate these variables with body mass index and degree of curvature of the spine, with respect to the reference values of the local population. Finally we assessed the independence or relationship of these variables compared to the other using statistical correlation methods.
-----------------------------------------------------------------

In the past, no matter how much I would exercise my weak side, or electrostim my weak side, It seemed impossible to get any results.
There most definitly is something wrong with the muscles on my lower right side. A muscle problem or a signal problem...
Ed

Dingo
05-10-2010, 12:25 PM
From the Google translation:


The conclusion reached is that the cause of these patients, usually girls, can not exercise is that your muscles do not function normally and not vice versa as it seemed so far.


The recent discovery reformulates it: muscle involvement is not the result of no training due to the deformity of the spine, but muscle involvement may be the real cause of the scoliosis itself.

That certainly explains why Torso Rotation Strength Training was found to be effective.

I think what happened was that the TRS studies were so convincing that it caused scientists to rethink their hypothesis' about Scoliosis and muscle asymmetry.

The researchers involved in these studies are a credit to the field of science.

The Role of Measured Resistance Exercises in Adolescent Scoliosis (http://www.medxonline.com/downloads/articles/measuredresistanceinscoliosis.pdf)

Treatment of adolescent idiopathic scoliosis with quantified trunk rotational strength training: a pilot study (http://www.ncbi.nlm.nih.gov/pubmed/18600146)

They very likely saved my son from a childhood of 18 hour per day bracing and possible fusion. For that I am eternally in their debt.

titaniumed
05-10-2010, 12:54 PM
If Torso rotation strength training works for adolescents, thatís fantastic and certainly worth a try. Dingo, you are fortunate that you caught this early. I would probably do the same thing.

A true test of this would be to take a person with documented large curves, and straighten or correct the spine. Age plays heavily here.

"If" itís a muscle pathology, or signal issue, there are different levels of effectiveness from person to person and muscle group to muscle group. After a few decades of atrophy, it becomes a tough battle.

After all the years, I do know one thing. Staying active is key. The times that I didnít stay active were painful periods. Degeneration didnít help things either. My spine was like a wooden ladder out in the elements. After 50 years, rebuilding was necessary.

Ed

rohrer01
05-10-2010, 01:35 PM
Has anyone investigated as to whether or not there are any muscles actually missing? I ask this because it was discovered after 30 years during an EMG that I have a major muscle in my foot that is missing. No one ever noticed it and like skevimc (I think that's his name) mentioned on another thread, the body has many, many backup mechanisms to maintain function. However, if small muscles of the spine that are the underlying muscles were missing, who would notice unless you were particularly "looking" for that muscle group and it wasn't there. That may account for some of the muscle assymetry. Exercise would be more difficult, but the "backup" muscles may be able to be trained to make up for some of the deficit in people with smaller curves. OR it could be just neurologic and the signals aren't getting to the muscles as has been suggested. In this case the muscles would atrophy. Just a thought.

Pooka1
05-10-2010, 01:59 PM
In the study, we measured the muscle function of the arms and legs and respiratory muscles and breathing capacity and exercise in 60 patients with adolescent idiopathic sclerosis with a steep angle of curvature (greater than 40 per cent), as well as 25 healthy controls. In these patients, previously ruled the existence of muscular and respiratory problems not associated with scoliosis. An attempt to correlate these variables with body mass index and degree of curvature of the spine, with respect to the reference values of the local population. Finally we assessed the independence or relationship of these variables compared to the other using statistical correlation methods.

If I'm understanding this, a better control group would be AIS patients with mild curves. They should compare those against the patents with large curves to nail down cause and effect.

And they are going to have to explain the kids with AIS who are very competent at sports including those requiring bilateral strength.

ETA: They are also going to have to address the one study at least that found NO bilateral asymmetry in muscle strength.

titaniumed
05-10-2010, 02:01 PM
I'm very optimistic as far as the future holds for scoliosis. Its great that awareness has risen and people are thinking about this on many levels.

When I was dxd back in 1974, I was told to stop weight training. They just didnít know, and I saw and read some very concerned faces... I feel sorry for my old Doctors, my situation probably bugged the heck out of them. They also were not totally positive on the bracing issue either at that time.

I'm actually very optimistic about the whole package. I'm not talking about scoliosis, I'm talking about all of it. Cancers, MS, ALS, PLS, Parkinson's, etc, etc, etc. We have come to a point of accelerated growth in these areas, (medical research) and it will be great to hear about future developments, breakthroughs, and ultimately "cures". This truly is everyone's war on terror, and deserves support and financing. I'm sure Bill and Melinda Gates are doing the right thing.

Brain and CNS research needs to be accelerated. It would help answer many questions.
Ed

skevimc
05-10-2010, 02:02 PM
A true test of this would be to take a person with documented large curves, and straighten or correct the spine. Age plays heavily here.


Ed

In our study, we had 3 patients with curves larger than 45į. None of them responded to treatment and two went to surgery within the year. The third was lost to follow up but almost certainly ended up in surgery. My thought is that ~45į is a threshold for anything muscular to control, i.e. muscles will do very little once the curve gets that big. The biomechanics for the muscles to effectively contract/control vertebral levels are most likely severely messed up. However, the Cobb angle also might not be the best threshold but probably vertebral rotation at the apex. I think that probably affects muscular biomechanics more than later deviation.


Has anyone investigated as to whether or not there are any muscles actually missing?

To my knowledge no one has specifically studied this. However, there have been several MRI and biopsy studies looking at the muscles of the back in AIS patients and I don't recall reading anything about missing muscles. As well, if this were a common thing, surgeons would have noticed a while ago and would probably have studied it or at least reported the finding somewhere.

titaniumed
05-10-2010, 04:01 PM
In our study, we had 3 patients with curves larger than 45į. None of them responded to treatment and two went to surgery within the year. The third was lost to follow up but almost certainly ended up in surgery. My thought is that ~45į is a threshold for anything muscular to control, i.e. muscles will do very little once the curve gets that big. The biomechanics for the muscles to effectively contract/control vertebral levels are most likely severely messed up. However, the Cobb angle also might not be the best threshold but probably vertebral rotation at the apex. I think that probably affects muscular biomechanics more than later deviation.





Too bad there wasnít an easier way to monitor rotation. I donít know the accuracy of reading "shadows" on coronal x-rays, and CT's emit way too much radiation....My post op CT's show approx 30 degree rotation at each apex. I posted those on one of my threads. I donít know what my pre-surgical rotation was, however my hospital has pre-surgical CT's. I should go down and pressure them to burn that disc for me. Just a thought.

Since biomechanics of the muscles are hampered in curves larger than 45 degrees, does age play a part? Does a 13 year old with a 45, have these elevated muscular issues?

I wonder if the biomechanics are screwed up from the start? I guess EMG studies would need to be performed on patients from the start and followed through the years.

Do the EMG readings correlate to curvature?

Do voltages drop with progression? Do voltages increase upon correction?
Ed

rohrer01
05-10-2010, 04:14 PM
Mabe a little off topic, but if the muscles can't work to hold a spine with a curve >45*, then why in the heck am I having so much trouble finding someone to help me with my 46* cobb AND severe PAIN?? So very frustrating!!:mad: I know I have rotation also because when I stand "straight" and look in the mirror, my belly button is about an inch off center to the right, and my left hip appears higher. ???? This is something the doctor NEVER even looked at, in fact they never even had me put a gown on except for the X-ray! ???? Just venting.

titaniumed
05-10-2010, 04:43 PM
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 donít 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

skevimc
05-10-2010, 04:56 PM
Too bad there wasnít an easier way to monitor rotation. I donít know the accuracy of reading "shadows" on coronal x-rays, and CT's emit way too much radiation....

The pedicle shadows, I think, are reasonably accurate but certainly have limitations. I'm sure there are reliability studies. I'd imagine the consistency of the x-ray tech would be of crucial importance. We began measuring rotation late in our study and I could never really get them excited about including it in the article. It was just one more data point. So it got scrubbed. But I think the data is somewhere in a spread sheet back at KU.



Since biomechanics of the muscles are hampered in curves larger than 45 degrees, does age play a part? Does a 13 year old with a 45, have these elevated muscular issues?


Hampered biomechanics is just my hypothesis. But yes, I'd say that age does play a role, in some way, most likely in terms of spinal growth or growth plates.



I wonder if the biomechanics are screwed up from the start? I guess EMG studies would need to be performed on patients from the start and followed through the years.


I would say that biomechanics are not screwed up from the start. This is why I think exercise/strength training could really help the smaller curves. Starting at around 35į, the vertebrae begin to shift and stretch (or shorten) muscles enough to affect function. This change in muscle length puts the muscle in a sub-optimal position to exert maximum force. (It's a well known concept called the length-tension curve). As an example, put your arm/elbow at 90į. Find the maximum weight you can still lift with your arm in this position. Now fully extend your arm and try to lift the same weight. It's pretty much impossible without compensating in some way, i.e. dipping your shoulder, swinging the weight, etc... Our muscles have a preferred operating length. If you go outside of this preferred length, then the muscle has a hard time operating effectively. It might try to exert force, but in the case of the spine, if one muscle doesn't work it will recruit another muscle. Over time, if that muscle doesn't learn how to operate correctly, then the body would continue using the other recruited muscles. This would eventually lead to atrophy in the affected muscle.

So... hypothetically... as the curve progresses, the vertebral musculature lengthens or shortens at various levels of the curve, e.g. the apex. As this happens, the muscles become less able to control that individual spinal segment. Globally, the body is still able to function reasonably well. But locally, the paraspinal muscles are not controlling the individual levels as well. In cases of self-resolving scoliosis, the muscles 'wake up' and begin to be used effectively. In progressive cases, the muscles never wake up or wake up too late (larger curve) to be able to adequately support the vertebrae.



Do the EMG readings correlate to curvature?
Do voltages drop with progression? Do voltages increase upon correction?


There are studies linking some EMG parameters to progressive curves compared to stable curves. The convex side is higher than the concave side. I saw this in walking and while performing trunk rotations (unpublished data). I would make the hypothesis that the larger the curve, the larger the difference/ratio at the apex. But I'm not sure if that would really be the case.




Mabe a little off topic, but if the muscles can't work to hold a spine with a curve >45*, then why in the heck am I having so much trouble finding someone to help me with my 46* cobb AND severe PAIN?? So very frustrating!!:mad:

Let me stress that this is just my working hypothesis. I think it's fairly accurate to say that the biomechanics and muscle force is altered in larger curves, but whether or not that translates in to an inability to control those curves or spinal segments is unknown.

titaniumed
05-10-2010, 05:35 PM
Skevimc,
Thanks for chiming in today, and volunteering the information. Its appreciated.

I can continue, but I'm tired and post surgical fatigue is pointing me in the direction of a nap...

This weather pattern right now is creating "bear traps". The tightening of the paraspinal muscles in my mid back. I donít know why, but it seems like low pressure combined with cold acts as a catalyst. As soon as the storm passes, I'm fine.

I will be glad when winter is over.
Ed

Bigbluefrog
05-10-2010, 09:07 PM
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
05-11-2010, 05:45 AM
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
05-11-2010, 06:39 AM
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 donít 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
05-11-2010, 12:05 PM
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 <35į. 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
05-12-2010, 10:52 AM
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
05-12-2010, 11:35 AM
Trunk rotational strength training (RST) will probably only work for curves <35į. 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
05-12-2010, 11:59 AM
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. <15į. 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 (>5į) 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
05-12-2010, 12:32 PM
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. :confused: 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
05-12-2010, 02:21 PM
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. :confused: 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
05-12-2010, 06:49 PM
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
05-13-2010, 01:32 PM
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 :cool: 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
05-28-2010, 12:31 AM
Does anyone have a link to the Spanish study?

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