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Dingo
06-12-2009, 04:08 PM
Torso rotation therapy has been repeatedly found to be effective for the treatment of Scoliosis. There are links floating around about this therapy in various new and ancient threads. I decided to post all known links here. If you know of any study or anecdotal information that is either pro or con please post it here for other parents.

September-17-2008 - News Story with Video: MedX torso machine reduces 8 year old girl's curve from 14 degrees to 8 degrees. (http://www.wrcbtv.com/story/9056379/scoliosis-treatment)
Roger Schwab: "We've seen it work on almost every case that we've had."
Main Line Health and Fitness Scoliosis page (http://www.mlhf.com/Physical-Therapy-Medical-Breakthroughs.asp)

May-24-2010 - Before and after x-rays: 10 months of Torso Rotation Strength Training (http://img809.imageshack.us/img809/4903/trs990x670.jpg)
An 11 year old girl used TRS therapy for one year to treat her Scoliosis. The mother e-mailed me the x-rays and I combined them into one picture.

Therapy is based on these 3 torso rotation strength training studies. All 3 studies found that torso rotation strength training stopped curve progression in all small and moderate curves. Many curves were reduced.

February 2003 - Study: The Role of Measured Resistance Exercises in Adolescent Scoliosis (http://www.ncbi.nlm.nih.gov/pubmed/12597221)

16 of the 20 patients demonstrated curve reduction, and although some fluctuation occured, none of the remaining 4 patients had a persistent increase in curve. No patient required surgery or bracing.

2006 - Study: Trunk rotational strength training for the management of adolescent idiopathic scoliosis (AIS). (http://www.ncbi.nlm.nih.gov/pubmed/17108439?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1&log$=relatedarticles&logdbfrom=pubmed)

Seven adolescents with AIS (5 female 2 male; mean 14 yrs +/- 2.6 yrs; mean Cobb 28 degrees +/- 6 degrees range 20 degrees -37 degrees) underwent four months of supervised trunk rotational strength training, and repeat strength test. Four individuals showed reduction (>5 degrees) in their original curve, and 3 remained the same (+/-5 degrees).

July 2008 - Study: Treatment of adolescent idiopathic scoliosis with quantified trunk rotational strength training: a pilot study. (http://www.ncbi.nlm.nih.gov/pubmed/18600146?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVXml)

Patients received a 4-month supervised followed by a 4-month home trunk rotational strength training program.

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 to determine this.

2000 - Study/Report: A Preliminary Report On The Effect Of Measured Strength Training In Adolescent Idiotpathic Scoliosis (http://medxonline.com/pdf/prelimadolescentscoliosis.pdf)

Myolectric activity was asymmetric in both sides and in abdominal and paraspinal muscles of all patients. These asymmetries were corrected completely with torso rotation, which was associated with significant strength gains.

March 2007 - The Journal Of Musculoskeletal Medicine
Photocopied Report: Dr. Vert Mooney: Exercise For Managing Adolescent Scoliosis (http://www.fasciaresearch.com/WCLBP/Barcelona/Mooney_Exercise%20for%20Managing%20Adolescent%20Sc oliosis.pdf)

We combined this experience with that of a physiotherapist in New Zealand who was using the same equipment and the same protocols for a total of 31 patients with adolescent scoliosis. The mean curvature was 29.5 degrees (range 10 to 50) when treatment started and 25.1 degrees (minimum decrease, 4 and maximum decrease 43) when it concluded. ...None of the patients worsened.

In most cases the curvature can be reduced. Brief exercises performed twice a week are adequate. Braces are not necessary.

May-18-2006 - Thread: Gerbo asks Dr. Vert Mooney a few questions about Torso rotation and the longterm effects of this therapy (http://www.scoliosis.org/forum/showthread.php?t=3627)
Gerbo:
Similarly to what i asked a year ago, are you still following your initial study group and has stabilisation been maintained?
Dr. Mooney:
I have followed some and stabilization has been maintained.

December 2 - 2011 Interview
I just conducted an interview with one of the nation's top Scoliosis experts. (you can read it here (http://www.scoliosis.org/forum/showthread.php?12810-Dr.-Douglas-Kiester-discusses-MAGEC-Remote-Control-Spinal-Deformity-System)) After the interview we had an exchange about torso rotation that I found helpful so I'm going to include it here.

Question) Your answer on the ineffectiveness of traction and exercise got me thinking.

"Again, exercising for hours at a time is no match for the braces on your teeth that are constantly pulling."

You are absolutely correct. When my son does torso rotation exercises he performs 3 sets of 15 on each side. The total time he spends exercising is literally a couple of minutes. I don't see how that small amount of stretching could make much difference. Could torso rotation work because of some sort of secondary action? For instance maybe this type of exercise releases hormones that stretch the ligaments in the spine? Maybe some other secondary effect? But you're right, a few minutes of exercise probably isn't enough to have a direct impact on the ligaments.

Dr. Kiester) Reasonably directed exercise is of huge impact which is why the immobilization of body bracing has such negative effects. The amount the ligaments have to stretch to stop the progression of the curve is surprisingly small. Thus a little exercise of an effective kind may even result in some reversal of the deformity. Doing a moderate force of continuous stretching (like putting braces on teeth) is when the goal is complete or near complete restitution of the normal anatomy.

March 2011 - Article by Physical Therapist Scoliosis Success Story (http://archive.constantcontact.com/fs035/1102339964301/archive/1106676920691.html)


We received a call from a woman, whose 16 year old daughter was suffering from scoliosis. Her curvature had been measured between 40-41-degrees in April 2010.


The protocol was simple: One set of exercise to either side, starting with the weaker of the two. She was to go to muscular fatigue if possible on the weak side, or up to the point where I was satisfied with her effort and concerned that mechanics would break down. In most cases, this meant approximately 7-8 reps, and attempting to move slowly and smoothly. As with all novices, the 'control' aspect is difficult - and particularly with an exercise as demanding as the MedX Torso Rotation.


Come late-November, she visited the doctor and her curvature was tested. The results, as we hoped, were positive: a 6-degree improvement (from approximately 40-degrees; 15% less curve).

MissEmmyF
06-15-2009, 10:39 AM
I think I read somewhere on the forum that these types of exercises are more helpful for someone with thoracic scoliosis vs. lumbar scoliosis, right? In other words, the exercises target the muscles higher up in the back and not as much in the lower portion of the back?

Dingo
06-15-2009, 11:13 AM
MissEmmyF

The MedX machine stabalizes the pelvis to ensure that the work is done by the back and not the hips. It makes sense that this therapy might be more effective for thoracic curves than lumbar curves, however I'm not sure if that's the case. Torso rotation appears to be effective for virtually any curve of 40 degrees +/- or less. Somehow this therapy must affect the entire back.

Main Line Health And Fitness (http://www.mlhf.com/scoliosis.html) uses other machines that target the rest of the back and they say they're reducing curves by up to 50%.


Most exciting is that MLME/MLHF has developed a specific protocol utilizing both the Med-X Torso Rotation and Lumbar Extension machines as well as several complimentary Med-X and Nautilus exercise machines.

All children with AIS have trunk rotational strength asymmetry. In English that means one side of the back is stronger than the other. IMHO any machine or exercise that addresses that problem is probably helpful.

Trunk rotational strength asymmetry in adolescents with idiopathic scoliosis: an observational study (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2072936)

MissEmmyF
06-15-2009, 11:23 AM
thank you, very interesting...i wonder how many gyms have this type of MedX equipment? and, even if they do, i wonder how many of the trainers at the gyms know how to use them properly to help people with scoliosis?

Dingo
06-15-2009, 01:37 PM
MissEmmyF

If you scroll to page 4 of this study (http://www.medxonline.com/downloads/articles/measuredresistanceinscoliosis.pdf) you can see the results of Torso Rotation on a variety of different curve types.

I would call around but I imagine that any large gym would have a MedX or comparable machine. I know that pelvic stabilization is important so if the machine doesn't have that feature it may not be as effective. If you read page 3 of the Mooney study it explains how they used the machine to treat Scoliosis. I don't think it requires any special knowledge or ability and it only takes about 30 minutes per week.

I think a MedX machine costs roughly $6,000 or so. That sounds like a lot until you consider that a brace can cost a third to half that amount. Plus when you reach skeletal maturity you can sell your MedX to someone else. Good luck trying to do that with a custom fitted back brace. :)

MissEmmyF
06-15-2009, 03:13 PM
I actually called the phone number from the Main Line Health & Fitness website (in PA) and spoke with one of the customer service representatives (at least I think that's what she was?). I asked if she knew of any other gyms or physical therapy offices that offer the same scoliosis program but closer to me (in CT)? She didn't know, so she gave me the email address of the Director at MLH&F...I just emailed him, so I'm waiting for him to reply...

I know you do similar exercises with your son using a ball - I'm wondering if this could be as effective as using the MedX torso rotation machine (assuming of course that the pelvis stays in one location and doesn't move)...

Dingo
06-15-2009, 03:55 PM
MissEmmyF


I'm wondering if this could be as effective as using the MedX torso rotation machine

My 5 year old uses a large exercise ball and rotates left to right 50 times in the morning and 50 times before he goes to bed. He wears ankle weights to keep him steady and I stand behind him to make sure he goes equal distances in both directions. Unfortunately I haven't found a safe and practical way to stabilize his pelvis.

This develops muscle and it stretches out his back but it probably isn't as effective as the MedX. I'm pretty sure my son is too young to fit into the machine so it's the best we have for now. We do other exercises for both strength training and balance and I hope that makes up for it.

On the plus side we are very consistent. I write everything down in his exercise diary which keeps us disciplined.


I asked if she knew of any other gyms or physical therapy offices that offer the same scoliosis program but closer to me (in CT)? She didn't know, so she gave me the email address of the Director at MLH&F...I just emailed him, so I'm waiting for him to reply...

That is awesome! Let me know if they find you a gym. :D

MissEmmyF
06-15-2009, 04:17 PM
Dingo: My 5 year old uses a large exercise ball and rotates left to right 50 times in the morning and 50 times before he goes to bed. He wears ankle weights to keep him steady and I stand behind him to make sure he goes equal distances in both directions. Unfortunately I haven't found a safe and practical way to stabilize his pelvis.

Me: I'm assuming he does this standing? Does it help at all if he does it while he's sitting on the edge of a chair or stool?

Dingo: This develops muscle and it stretches out his back but it probably isn't as effective as the MedX. I'm pretty sure my son is too young to fit into the machine so it's the best we have for now. We do other exercises for both strength training and balance and I hope that makes up for it.

Me: Yeah, I would think a MedX machine would be way too hard/big for him since he's so young! What other strength training exercises do you do with him? For balance, you use the balance board, right?

Dingo: On the plus side we are very consistent. I write everything down in his exercise diary which keeps us disciplined.

Me: Yeah, that definitely helps. I write down everything I do each day too and it helps to keep me motivated.

Dingo: That is awesome! Let me know if they find you a gym.

Me: I'll definitely let you know! Just curious, how old was your son when you spotted his scoliosis and do you know what his curve(s) measures? Have you seen any changes in his back since starting all the exercises?

Dingo
06-15-2009, 05:16 PM
MissEmmyF


Does it help at all if he does it while he's sitting on the edge of a chair or stool?

If he was older and more coordinated sitting might be a good idea. With little kids you have to make it as easy as possible and right now he would flop over. We do it standing because it's so much easier. Plus when you do it standing it stretches out the entire spine. If you do it both ways you'll see what I mean.



For balance, you use the balance board, right?

Yep, we use this balance board (http://www.gofit.net/site/gofit/product/161?link_id=68&link_section_id=63) 15 minutes per day. He does it while he watches SpongeBob. His record has increased to about 10 seconds without tipping. He usually lasts about 2 to 5 seconds at a time. If nothing else this works his core muscles and it's better than lying on the couch. :)


What other strength training exercises do you do with him?

We've got it down to a system.

Every day
Morning: 50 rotations in the morning (25 left, 25 right)
Afternoon: 15 minutes on the balance board
Bedtime: 50 rotations, sit down and stretch for a few minutes followed by a couple minutes of massage with a device like this (http://www.homedics.com/products/massage/therapist-select-compact-percussion-massager.html) on his spine. All spine growth takes place at night so if there was ever a good time to stretch out it's bedtime.

We do a different strength training exercise each late afternoon except on Sunday. I try to keep workouts down to 10 minutes or less. We do all exercises slowly and with very light weight. Scott weighs 38 pounds and most of the time we lift just 20% or 25% of his body weight. According to the American Academy of Pediatrics (http://children.webmd.com/news/20080407/new-strength-training-advice-for-kids) strength training is safe for children as young as 7. My son is almost 6 so that's early but we are being very cautious.

Monday: lying rotations (http://www.wonderhowto.com/how-to/video/how-to-exercise-with-the-lying-trunk-rotation-on-bosu-w-ball-206362/view/)
We do an exercise very close to the one in the video except we use a 3 pound dumbbell instead of a ball. In our version he uses a small pad like this (http://www.sportsauthority.com/product/index.jsp?productId=3372258&clickid=body_rv_img) instead of a Bosu Ball. He lays on the reverse side without the spikes. We place it under his shoulders and head instead of his middle back. My son's feet are in the same position but they are supported by the couch. We do 5 sets of 10.

Tuesday: 5 sets of Supermen (http://www.youtube.com/watch?v=_M7Oum7VbkU) (10 seconds each), 5 sets of leglifts to keep his abs balanced.

Wednesday: Lying Dumbbell Rows (http://www.youtube.com/watch?v=Lo0F5TkjPSI)
We do this exercise but on a low, narrow bench to strengthen his middle back. We use two 4 pound dumbbells. 5 sets of 10.

Thursday: Dumbbell Press (http://www.youtube.com/watch?v=EyNkZrJ0w2c)
This exercise doesn't directly work his back muscles. We work out his chest to keep him balanced. We use two 4 pound dumbbells and do 5 sets of 10. BTW, the girl in this video is doing them too fast and with bad form. Obviously we lift slow not fast. In addition we start the dumbbells low at his abs, not at shoulder level with his elbows out. He pushes the dumbbells up and stops when they are right above his shoulders. Elbows IN not out the entire way up and down. It's easy to get a shoulder injury if your elbows are out.

Friday: Lat Pull Downs (http://www.youtube.com/watch?v=O3kAMDNjtt4)
We already had this machine at our house. This works out his back and even his ab muscles. This woman uses a grip that is much too wide. Never use a grip much wider than your shoulders. Shoulder width or narrower is what your body was built for. We use 11 pounds (used to use 10) and do 5 sets of 10.

Saturday: Same workout as Tuesday

Sunday: No strength training on Sunday

Ok, is any of this working? After 1 month my wife and I noticed a visible reduction in his rotation. We hope we aren't imagining his improvement. There is always a chance that the extra muscle his body grew is hiding the curve/rotation. Perhaps strength training has improved his posture and this is hiding his rotation/curve. We can't know for sure until his next doctor visit in 5 months. Right now I am very optimistic. If this works I'll try and post his x-rays.

Disclaimer: I am not a doctor, physical therapist or medical professional. Always consultant with a physician before starting any exercise program.

trcylynn
06-15-2009, 06:07 PM
When I was in college I got a membership to a Y that had a torso machine- it was not the same as shown- very generic- but I held my pelvis in place and facing straight ahead. The machine worked my obliques so well and my back felt great! I unfortunately have not found this machine anywhere at the gyms I belong to now...

I tried creating my own torso rotation strength training by using the pulley system they have at the gym and trying to keep my hips forward and rotate from my trunk but I worry that using a cable is using more of my arm strength than core strength.

One of my PTs had me doing something similar where I would hold my back straight (as in flex my obliques and abs so that my back looked straighter) then I would bend to the side (holding it "straight") and rotate- it was one of the hardest things I've ever done and I didn't use any weights!

My back is feeling and looking awful again so I think I need to invest my time in training it like I used to. Just the bonus of aiding the pain was enough to keep me motivated at the time.

Dingo
06-16-2009, 11:28 AM
One note on my son's strength training

Although I'm completely sold on torso rotations, nightly stretching and the balance board I'm still working out the bugs on Scott's strength training. Our goal is to make his left side as strong as his right and the front of his body as strong as his back. How we we do that may evolve over time.

MissEmmyF
06-16-2009, 04:37 PM
One note on my son's strength training

Although I'm completely sold on torso rotations, nightly stretching and the balance board I'm still working out the bugs on Scott's strength training. Our goal is to make his left side as strong as his right and the front of his body as strong as his back. How we we do that may evolve over time.

Understandable. I'm impressed you were able to come up with such a comprehensive program for a 5 year old - not to mention the fact that he is motivated enough and likes it enough to continue doing it each day! That's awesome.

MissEmmyF
06-16-2009, 04:39 PM
When I was in college I got a membership to a Y that had a torso machine- it was not the same as shown- very generic- but I held my pelvis in place and facing straight ahead. The machine worked my obliques so well and my back felt great! I unfortunately have not found this machine anywhere at the gyms I belong to now...

I tried creating my own torso rotation strength training by using the pulley system they have at the gym and trying to keep my hips forward and rotate from my trunk but I worry that using a cable is using more of my arm strength than core strength.

One of my PTs had me doing something similar where I would hold my back straight (as in flex my obliques and abs so that my back looked straighter) then I would bend to the side (holding it "straight") and rotate- it was one of the hardest things I've ever done and I didn't use any weights!

My back is feeling and looking awful again so I think I need to invest my time in training it like I used to. Just the bonus of aiding the pain was enough to keep me motivated at the time.

Hmmm, good to know, thanks for sharing. I suppose a generic torso rotation machine (compared to a MedX brand torso rotation machine) is better than nothing! Unfortunately, I don't belong to a gym right now, so I'll have to start looking around to see what's out there.

Dingo
06-22-2009, 09:59 PM
I've done reading that suggests that the oblique abdominal muscles might be a muscle group that children with Scoliosis could focus on.

It is well known that children with AIS have muscle asymmetry. Put simply one side of the back and one side of the abs are stronger than the other (left vs. right). This is one reason that Dr. Mooney became interested in torso rotation strength training.

The oblique abdominals are one of the most important muscle groups that rotate the torso.

2007 - Study: Trunk rotational strength asymmetry in adolescents with idiopathic scoliosis: an observational study (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2072936)
Multiple muscle groups are involved in rotating the trunk. Among the most important muscle groups for trunk rotation are the oblique abdominal muscles. It is possible that the measured strength asymmetry is a result of altered biomechanics of the oblique abdominal muscles due to the asymmetrical torso.

It's possible that even without access to a MedX it may still be beneficial to strength train the oblique abdominals.

Here is a video of a woman working her oblique abdominals with an exercise called the Side Plank (http://www.youtube.com/watch?v=1TzI8j776Z8).

Dingo
06-22-2009, 10:01 PM
Another study that suggests that Dr. Mooney's theory of symmetrical strength training is sound.

February 2006 - Study - Geometric and electromyographic assessments in the evaluation of curve progression in idiopathic scoliosis. (http://www.ncbi.nlm.nih.gov/pubmed/16449906)


In the natural history of idiopathic scoliosis, SGV (remaining growth) and EMG (muscle imbalance) ratio at the lower end vertebra are prominent risk factors of curve progression. The asymmetric (imbalanced) muscle activity is associated with increased axial rotation, which in its turn is associated with increasing Cobb angle and diminishing kyphosis.

Translation: The more growth that remains + the greater the muscle imbalance = more spine rotation which in turn leads to a larger cobb angle.

Obviously this is an average of 105 kids. Every spine "breaks" a little differently.

Dr. Douglas Kiester told me essentially the same thing (http://www.scoliosis.org/forum/showthread.php?t=8948). First the spine rotates and then growth pushes out the lateral curve.

Dingo
06-23-2009, 11:35 PM
I just got a private message from a mom who tried the plank (http://www.youtube.com/watch?v=1TzI8j776Z8) with her daughter.

She said that her daughter had no problem performing the exercise on one side. Then she tried the other side and had significant trouble staying up. Her pelvis kept rocking back and forth. She called the difference "drastic".

Although most people (including myself until recently) haven't heard of this phenomenon scientists are well aware of it. Just 30 minutes of strength training per week can correct this completely and in theory it could have a positive impact on Scoliosis.

Imagine that muscles on one side of the spine are pulling with 10 pounds of force and the muscles on the other side are pulling with 7 pounds of force. This imbalance goes on 24/7 for a lifetime. It doesn't take a lot of imagination to see that curve progression might result from this. In fact it's hard to imagine how this wouldn't create a curve.

I would love to test this on my son but he is on vacation until July 2.

LindaRacine
06-24-2009, 12:04 AM
I just got a private message from a mom who tried the plank (http://www.youtube.com/watch?v=1TzI8j776Z8) with her daughter.

She said that her daughter had no problem performing the exercise on one side. Then she tried the other side and had significant trouble staying up. Her pelvis kept rocking back and forth. She called the difference "drastic".

Although most people (including myself until recently) haven't heard of this phenomenon scientists are well aware of it. Just 30 minutes of strength training per week can correct this completely and in theory it could have a positive impact on Scoliosis.

Imagine that muscles on one side of the spine are pulling with 10 pounds of force and the muscles on the other side are pulling with 7 pounds of force. This imbalance goes on 24/7 for a lifetime. It doesn't take a lot of imagination to see that curve progression might come from this. In fact it's hard to imagine how this wouldn't create a curve.

I would love to test this on my son but he is on vacation until July 2.

Dingo...

I can't be the only one thinking that you'll never know what, if anything, worked for your son. It sounds like you're trying everything possibly imaginable. And, the most likely scenario is that his curve won't progress regardless of what therapies are undertaken. Don't you occasionally just want to let him be a kid?

--Linda

LindaRacine
06-24-2009, 12:18 AM
Dingo...

I'd like to apologize for that last post. It sounds snotty. I didn't mean it to be. You do, however, have more than your share of theories.

--Linda

Dingo
06-24-2009, 12:35 AM
LindaRacine


the most likely scenario is that his curve won't progress regardless of what therapies are undertaken
I wish you were correct but unfortunately I don't think you are. My son is a young juvenile with an S curve and significant rotation. His odds of progression are very high. If you have access to any studies or literature that suggest otherwise please post them because they'll help me sleep better.


Don't you occasionally just want to let him be a kid?
"Watch and wait" can't help my son and 15 minutes of exercise can't hurt him. I should also add that my son doesn't know he has Scoliosis. We exercise together and he thinks we do it to help his muscles grow.

Lorraine 1966
06-24-2009, 03:41 AM
taken from your post.
Imagine that muscles on one side of the spine are pulling with 10 pounds of force and the muscles on the other side are pulling with 7 pounds of force. This imbalance goes on 24/7 for a lifetime. It doesn't take a lot of imagination to see that curve progression might come from this. In fact it's hard to imagine how this wouldn't create a curve.

Dingo, taking the above quote from you, then how can 15 minutes of exercise a day prevent it from getting worse?

You dont know as Linda said if your sons curve is going to get worse, take it from someone who has a very sick adult son who has Diabetes 1,( juvenile onset at 14), please dont let this take up your whole life worrying as our children pick up on our feelings, whether he thinks he is just improving his muscles or not, children are a lot more switched on than we realise.

All the best
Lorraine.

mamamax
06-24-2009, 06:31 AM
I just got a private message from a mom who tried the plank (http://www.youtube.com/watch?v=1TzI8j776Z8) with her daughter.

She said that her daughter had no problem performing the exercise on one side. Then she tried the other side and had significant trouble staying up. Her pelvis kept rocking back and forth. She called the difference "drastic".

Although most people (including myself until recently) haven't heard of this phenomenon scientists are well aware of it. Just 30 minutes of strength training per week can correct this completely and in theory it could have a positive impact on Scoliosis.

Imagine that muscles on one side of the spine are pulling with 10 pounds of force and the muscles on the other side are pulling with 7 pounds of force. This imbalance goes on 24/7 for a lifetime. It doesn't take a lot of imagination to see that curve progression might result from this. In fact it's hard to imagine how this wouldn't create a curve.

I would love to test this on my son but he is on vacation until July 2.

Dingo - some years back i had a PT exercise much like that. It helped a lot. You know, i never carried on with those exercises past a few weeks. And people wonder why exercise "seemingly" does not work .. a little thing called, compliance. Think folks have done studies on that ;)

You are a good dad and it sounds like your son is growing up with a healthy attitude towards exercise as a way of life!

MissEmmyF
06-24-2009, 09:44 AM
I agree...I think you're doing a great job Dingo, and your posts are always very interesting and informative. I don't think 15 min. of exercise a day (which is healthy regardless of whether or not it's related to scoliosis) is taking away any of his ability to "be a kid." It's ONLY 15 minutes! He has the whole rest of the day to "be a kid"! Plus, it seems like you make it fun for him. You're lucky you were able to notice his scoliosis at such a young age and get started with exercises while he's the most pliable and not as "set" in his scoliotic position. At the very least, if he does ever reach the point of surgical levels, you'll know you did everything in your power as a father to prevent it.

Dingo
06-24-2009, 12:06 PM
MissEmmyF
mamamax


At the very least, if he does ever reach the point of surgical levels, you'll know you did everything in your power as a father to prevent it.

Thanks you guys. And yes, if I ultimately fail I plan to go down swinging. :)

Dingo
06-24-2009, 12:14 PM
Lorraine 1966


how can 15 minutes of exercise a day prevent it from getting worse?

Studies have found that just 30 minutes of strength training per week can manage Scoliotic curves.

Here is a story and video of an 8 year old doing Torso Rotation Strength Training (http://www.wcsh6.com/news/health/story.aspx?storyid=92954&catid=8). In her case she only works about 4 or 5 minutes, most likely twice per week.

2007 - The Journal Of Musculoskeletal Medicine: Exercise for managing adolescent scoliosis (http://www.fasciaresearch.com/WCLBP/Barcelona/Mooney_Exercise%20for%20Managing%20Adolescent%20Sc oliosis.pdf)


In most cases the curvature can be reduced. Brief exercises performed twice a week are adequate. Braces are not necessary.

Lorraine 1966
06-25-2009, 02:58 AM
I guess that's why these forums are such a good idea, we can all put our ideas forward and debate things. I should have put it better and said exercise would not under any condition have helped me, and I know of and have read of so many people who have fought against the idea of surgery for years and then finally had to have an operation anyway.

I do hope you dear little boy is helped by this and everything works out as you hope and dream, believe me. I just get so worried about peoples attitude to the thought of surgery thats all, and my way of thinking why not just get it over with if its going to happen anyway. But then everyones scoliosis is not the same thats for sure and thank goodness for that.

I also know the feeling of that you just have to do all you can for your children and feel confident that you could do no more.

.
Also I just read the article you recommended about Emma the 8 year old little girl, will her spine stay the same for years and years??? There is no scientific literature as the medics said to back it up. I wish there was of course but there isn't.
Please understand I am not having a go at you Dingo or people like you, it is only my opinion and Betty how about coming down here and giving me a little help!! So glad you are on here.

Regards
Lorraine.

Dingo
06-25-2009, 11:48 AM
Lorraine 1966


I do hope you dear little boy is helped by this and everything works out as you hope and dream, believe me.

I genuinely appreciate that. All I ever think about is my son's spine. I know that's not the healthiest thing but I've always had a propensity to overfocus on things.

There aren't any longterm studies on torso rotation so it's hard to know what to do. But I just can't stomach "watch and wait." If there is something out there that credible scientists think will help I want to do it.

BTW all the best to your son with Diabetes. Scientists believe they've finally unraveled the cause of Type 1 Diabetes. Evidently it's triggered by a common virus called the Enterovirus (http://en.wikipedia.org/wiki/Enterovirus) in genetically susceptible children.

Study Of Human Pancreases Links Virus To Cause Of Type 1 Diabetes (http://www.sciencedaily.com/releases/2009/03/090305141639.htm)

Unfortunately this virus can survive chlorination and it's commonly found in swimming pools among other places.

Occurrence of enteroviruses in community swimming pools. (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1619862)

Lorraine 1966
06-26-2009, 01:19 AM
Thankyou dingo for your kind words about my son and the references you gave me to read, I can understand how you eat, sleep and breath always thinking and worrying about your son. Most of us with children would much rather these things happen to us instead, wouldn't we.

Have you ever noticed though the ones who do get something quite serious wrong with them seem to be the type of children who can cope with it. In fact quite often I think they can teach us a lot about life lessons instead of the other way around.

All the best
Lorraine.

betty14
06-26-2009, 10:28 PM
Hi Dingo and everyone:

I thought I'd share a bit of info on the plank exercise with you. It is a great way to make the lateral trunk muscles work HARD. The muscles that do the work are the ones closer to the ceiling. I find that doing it on the elbow is way too hard for many people, however, so there are several effective modifications that don't involve the upper extremity. (I never work these with load on my arm because my shoulder and neck would hurt; also one has to concetrate so much on holding the shoulder positon that less attention is available for the spine).

How the exercise would help a person with a left convex curve in their lumbar spine, and a right convex curve in the thoracic spine: doing a plank with the right side up forces those weak muscles to work, to pull the joints back to the midline. At the same time, the thorax, which has drifted right, gets drawn left to sit aligned over the pelvis. For this curve pattern, the right ribcage should be drawn forwards and the right pelvis should be drawn back to derotate the thoracic and lumbar segments.

If done with precision, the modified planks are a powerful way to build bulk on the weak side. The version I do is the three-curve Schroth version, and as long as I do it regularly (every other day or do), all my curves above line up much nicer.

You can see MissEmmyF doing a version for her left muscles in her photo album.

Cheers,
B.

trcylynn
07-02-2009, 05:24 PM
I spoke to my PT about my old torso rotation exercises the other day and he was not happy... he said it puts extreme pressure on the spine. He said the spine is most vulnerable bent over (sorry for my translation I do not speak PT) and in rotation. He told me not to do them even though they seemed to have helped...

Can someone explain this further? I trust my PT but at the same time my back felt and looked better when I was doing those (along with 3 hours of other aerobics and strength training so I can't be completely sure it was just the rotation). Anyone else hear that this exercise is actually bad for your lower back becuase it places too much pressure on the lower discs?

Dingo
07-02-2009, 06:15 PM
trcylynn

Personally I think it's safe but I'm not a therapist. Dr. Mooney mentions that it's a safe exercise in one of his studies but I can't find the quote right now.

For what it's worth here is a thread full of physical therapists discussing torso rotation. (http://www.rehabedge.com/cgi-bin/ultimatebb.cgi?ubb=get_topic;f=36;t=000054;p=0)

jillw
07-05-2009, 02:58 PM
Dingo, just catching up on posts and wanted to say that you seem to be doing a good job with your son. Like you, I have only seen studies on JIS that statistically make progression of JIS very likely. I think you are taking a practical approach...maybe the things you are doing won't help, maybe they will. Nonetheless, strengthening exercises, eating a banana, sleeping in the dark, etc only contribute to the overall health of an individual. Worse case scenario your son will be learning healthy habits that may benefit him a lifetime - if it doesn't protect him from scoliosis progression, it may protect him from childhood (or later) obesity or heart disease or make him a better athlete (if that's where his interests lie) or who knows what. Certainly no harm in that! Best case, this will halt or reduce progression in your son's curve. I hope it does. You seem to be taking an informed approach, for example not using or recommending melatonin supplements since there could be a rebound effect and instead taking smaller steps. Very practical.
even those of us without scoliosis could probably benefit from some of your ideas.

Dingo
07-06-2009, 01:26 AM
jillw


...if it doesn't protect him from scoliosis progression, it may protect him from childhood (or later) obesity or heart disease or make him a better athlete (if that's where his interests lie) or who knows what. Certainly no harm in that!

Thanks Jill, that's exactly what I'm going for.

The reality is that parent's have to go with what credible scientists think is promising right now. Our kids won't get a second chance. Approximately 50% of Juvenile cases end in fusion and 70% are braced. I'm doing everything I can to keep my kid in the 30% column as long as I can.

betty14
07-06-2009, 01:08 PM
Hey, Dingo:

Would you mind posting a brief summary (just point form would be fine) of your situation and what you've been doing with your son? I know you have longer amounts of info. posted in other spots on the forum, but as a newbie, it's hard to find it all and put it together chronologicly. Thanks! B.

Dingo
07-06-2009, 05:27 PM
Betty14

I posted my son's background in another thread after his 1st recheck.

Here it is. Melatonin may have helped my son's Scoliosis (http://www.scoliosis.org/forum/showthread.php?t=8886)

I should mention that at my son's 1st recheck it appeared to me that his rotation had gotten worse. The doctor only measured his lateral curve so I have no way to know if that's true or not.

Around a week before my son's 1st recheck we started physical therapy. I posted my son's workout and it's the #9 message in this thread (http://www.scoliosis.org/forum/showthread.php?t=8976).

Since my original post the strength training portion of his therapy has slightly evolved (we do planks and other core exercises) but it's still basically the same. We never miss a day when he is home and he is visibly and measurably stronger. His next recheck is in about 4.5 months. I'll post the results whether they are good or bad. I'll be overjoyed if he is stable.

Dingo
07-07-2009, 12:40 AM
Physical therapists in Oregon tested Dr. Mooney's protocol and produced the same results.

BioMechanics Archives:: February 2005
Revisiting exercise and scoliosis management (http://www.biomech.com/full_article/?ArticleID=771&month=2&year=2005)


Our results using an identical testing and treatment protocol as described in the aforementioned studies reveal equally promising results. For example, one 12-year-old female graduate of our program radiographically demonstrated a 5 degrees curve reversal without the use of bracing. While we await the results of larger studies currently under way that address exercise-based management of adolescent idiopathic scoliosis, it is intriguing to contemplate that the muscle imbalances associated with scoliosis may be more causative than consequential. Such a possibility provides additional promise for conservative management of adolescent idiopathic scoliosis due to the plasticity of muscle tissue, particularly in the young adult. Thank you for a most welcome publication on a topic of great interest for the conservatively minded practitioner.

LindaRacine
07-07-2009, 01:09 AM
Not to rain on your parade... but this is just another study with zero followup. It seems to me that someone would have a few followup cases to report by now.

mamamax
07-07-2009, 04:57 AM
Physical therapists in Oregon tested Dr. Mooney's protocol and produced the same results.

BioMechanics Archives:: February 2005
Revisiting exercise and scoliosis management (http://www.biomech.com/full_article/?ArticleID=771&month=2&year=2005)

Dingo - That's an impressive article from the folks out Portland way. Quite an area & home to Portland State University .. I'm tempted to visit them next time I'm there. Here's their web link: http://www.blueskywebdevelopment.com/nwspine/index.php

Dingo
07-07-2009, 10:28 AM
mamamax

Right on! I believe that machine on the front of the site is the high end MedX machine.

LindaRacine


Not to rain on your parade... but this is just another study with zero followup. It seems to me that someone would have a few followup cases to report by now.

It is not credible to assume that the consistent, positive results produced by a variety of scientists and physical therapists aren't real. Morover these results combined with the results of other studies (http://www.ncbi.nlm.nih.gov/pubmed/16449906) implicate muscle imbalance as a cause of Scoliosis. In cases of progressive scoliosis this is rooted in a nervous system dysfunction (http://pico.sssup.it/files/allegati/2004_1469.pdf). How this dysfunction might lead to a muscle imbalance may remain a mystery for years to come.

LindaRacine
07-07-2009, 01:12 PM
mamamax

Right on! I believe that machine on the front of the site is the high end MedX machine.

LindaRacine



It is not credible to assume that the consistent, positive results produced by a variety of scientists and physical therapists aren't real. Morover these results combined with the results of other studies (http://www.ncbi.nlm.nih.gov/pubmed/16449906) implicate muscle imbalance as a cause of Scoliosis. In cases of progressive scoliosis this is rooted in a nervous system dysfunction (http://pico.sssup.it/files/allegati/2004_1469.pdf). How this dysfunction might lead to a muscle imbalance may remain a mystery for years to come.

Dingo...

I never questioned the results. I'm questioning the lack of followup.

I think there may be real benefit from this type of program, if it allows people to avoid surgery. But, since there's a complete lack of followup from 100% of these studies, it leads me to think that the effects may be temporary. I know you talked to Dr. Mooney who claimed he was having good long-term results, but until those results are published, and validated by another center, I'm going to continue questioning them.

--Linda

Dingo
07-07-2009, 01:27 PM
LindaRacine


I never questioned the results. I'm questioning the lack of followup.

You are 100% correct, there have been no longterm studies published on this therapy. However the first official study was released in 2003 so this is a new concept.

In the following study (http://www.ncbi.nlm.nih.gov/pubmed/18600146) kids used a MedX machine for 4 months followed by 4 months of exercises at home. When scientists returned at the 2 year mark 2/3rds of children had stable curves and 1/3rd had worsened. Obviously it's impossible to know how many kids continued exercising after the initial 4 months because after that everything was done (or not done) at home. It's also possible that curve stabilization requires strength training on a MedX or similar machine until skeletal maturity. At home exercises might not be enough. Right now nobody knows.

I've never talked with Dr. Mooney but I quoted Gerbo who had written to him. I did talk to one of the scientists involved in the study that I linked to. He mentioned that a new study was starting in Texas very soon but he wasn't involved in it. I can only hope it will be larger and longer than the previous studies. On the downside if it's a longer study we may not get the results for many years to come.

Dingo
07-10-2009, 07:19 PM
I have a copy of the recent McIntire study (http://journals.lww.com/jspinaldisorders/Abstract/2008/07000/Treatment_of_Adolescent_Idiopathic_Scoliosis_With. 10.aspx) on Torso Rotation strength training mentioned above and one thing really stood out.

At the end of 32 training sessions (4 months) on the MedX machine conducted in a gym patients switched to unmonitored home strength training. The 4 month home program consisted of just 1 exercise. The child was instructed to tie a gold colored Thera-Band to a door knob, sit in a chair, hold the Thera-Band and rotate against the resistance. Patients were instructed to perform 3 sets of 15 repetitions to the left and to the right 3 to 5 times a week. This would take roughly 3 minutes.

How was compliance?


Although the patients were instructed in the home-based strength exercise program previously described, we did not effectively monitor their compliance. Our impression through retrospective inquiries was that only about one-third of them were reasonably compliant.

These kids knew that they were being studied and yet very few did their exercises at home. To me this calls into question whether it's possible to accurately study home strength training. Perhaps any strength training program would be helpful but it's hard to know because most teens aren't motivated enough to do it.

The results:
After 4 months on the MedX machine all children had stable curves. After an additional 4 months of home strength training (which 2/3rds of kids didn't do) all children still had stable curves. This lead the authors to remark,

Thus, it seemed that the supervised strength training effect lasted at least 4 months.

Put simply the impact of the MedX lasted an additional 4 months after training stopped.

From their discussion:

This finding is preliminary for 3 reasons. First, compliance with the 4-month home-based strength exercise was low. Second, no emphasis was placed on continuing the home training after the 8-month followup. And third, our protocol did not provide for additional supervised training intervals, which could be anticipated to result in further strengthening and thus added spine stabilization. If further investment is to be made in attempting to develop rotational trunk strengthening as a nonoperative treatment option for AIS, better monitoring of compliance with the home-based program and further experimentation to determine the optimum dose of strength training will be needed.

JMayor
07-10-2009, 10:00 PM
what about evidence that it reduced the curve? I am desperately trying to find a way to reduce my curves and get rid of my scoliosis.
Read a thread I started about a chiro who guaranteed to me in an email that his method would reduce my scoliosis by at least 5 degrees. He has a website you can read about what he does. here is the link to the thread:
http://www.scoliosis.org/forum/showthread.php?t=9112
what do you think?

LindaRacine
07-10-2009, 10:29 PM
I have a copy of the recent McIntire study (http://journals.lww.com/jspinaldisorders/Abstract/2008/07000/Treatment_of_Adolescent_Idiopathic_Scoliosis_With. 10.aspx) on Torso Rotation strength training mentioned above and one thing really stood out.

At the end of 32 training sessions (4 months) on the MedX machine conducted in a gym patients switched to unmonitored home strength training. The 4 month home program consisted of just 1 exercise. The child was instructed to tie a gold colored Thera-Band to a door knob, sit in a chair, hold the Thera-Band and rotate against the resistance. Patients were instructed to perform 3 sets of 15 repetitions to the left and to the right 3 to 5 times a week. This would take roughly 3 minutes.

How was compliance?



These kids knew that they were being studied and yet very few did their exercises at home. To me this calls into question whether it's possible to accurately study home strength training. Perhaps any strength training program would be helpful but it's hard to know because most teens aren't motivated enough to do it.

The results:
After 4 months on the MedX machine all children had stable curves. After an additional 4 months of home strength training (which 2/3rds of kids didn't do) all children still had stable curves. This lead the authors to remark,


Put simply the impact of the MedX lasted an additional 4 months after training stopped.

From their discussion:

Hi Dingo...

But, the authors go on to say that the results didn't hold at 24 months.

Also, the fact that 2/3 of the kids didn't comply with continued exercise of about 15 minutes a week is pretty telling. I think there are some people who will comply with an exercise program for a long time, but there are more who won't. If 15 minutes a week would hold a reduced curve in place, I think most of us would jump at it. I doubt, however, that 15 minutes a week could make a dent.

Regards,
Linda

Dingo
07-10-2009, 11:52 PM
LindaRacine


But, the authors go on to say that the results didn't hold at 24 months.

You can't expect 4 months of strength training to hold a child's curve until skeletal maturity.

4 months of strength training at just 30 minutes per week held every curve for 8 months. That's the best results I've ever read.

Pooka1
07-11-2009, 09:33 AM
You can't expect 4 months of strength training to hold a child's curve until skeletal maturity.

Then this is a case of premature publication.


4 months of strength training at just 30 minutes per week held every curve for 8 months. That's the best results I've ever read.

Dingo, I suspect many curves don't appear to move fast enough to see a measurable increase in 4 months. The highest rates are during the growth spurt. If they controlled for this one thing I think the data would be far less muddy. Also, most curves will not progress to surgery territory no matter what you do and don't do. That's the biggest reason why they need a control group.

Consistent with thought that 4 months is an insufficient time is that ~2/3 of the curves remained stable despite these kids not exercising reliably. Stable here means subsequent measurement less than or equal to 5*. Essentially, they created a control group "on the fly" in the middle of the study. Not good form but instructive nonetheless. It seems the "control" group fared as well as the study group based on what you write. (I'll look at the report in a minute).

What is the underlining hypothesis here? Is it that kids who develop AIS have weaker muscles than normal kids and that muscle can prevent the vertebral wedging that goes on to produce the curve?

I think we know that wedging is the issue because direct stapling to prevent growth in certain areas in fact does just that. So the question is... can exercise or external bracing for that ever hope to provide enough constant pressure to certain areas of the vertebrae in a very targeted fashion to prevent wedging? I mean even if the mechanism of muscle asymmetry caused by a nervous system malfunction is 100% correct, it DOES NOT follow that building muscle is sufficient to prevent wedging once the process gets started. There may be some time window very early but then you have to have the kid exercising from a very young age all the way through the growth spurt with no guarantees. And here I agree with you that this is going to be very hard to study due to lack of compliance. It may work but we will never know. Some things are just like that unfortunately. Essentiually, the cure is harder than the disease so to speak.

Pooka1
07-11-2009, 09:51 AM
In re McIntire et al.:

1. they have a study group of 15 patients which is very small. So it is impossible to say whether exercise is doing anythng over and above a control group per se. I suspect that group would fall in line with what is already known about propensity for curve increase based on Risser, age, menarchal status, curve magnitude etc.. They had to show that the propensity to increase was changed by the exercising which they did not (because that would have been mentioned in the abstract as it is the entire game here).

2. Note the sentence, "At baseline there was no significant asymmetry." Doesn't that alone and all by itself undermine the hypothesis that muscle asymmetry is involved here? I'm not sure why they proceeded with the study given that baseline.

3. Again, the biggest problem with this study appears to be premature publication... you won't expect to see a measurable change in a certain percentage of that small group in 4 months. You could have given them ice cream and claimed that stabilized the curve based on the data presented. I don't understand why this is publishable but what do I know?

Dingo
07-11-2009, 04:20 PM
Pooka1

Torso Rotation has been shown to improve many curves as well as stabilize. That's why the 4 month and 8 month findings are important.

Not only does this suggest that physical therapy is effective but that muscle imbalance and atrophy plays a part in Scoliosis. How or why this happens is still unknown.

You ask:
So the question is... can exercise or external bracing for that ever hope to provide enough constant pressure to certain areas of the vertebrae in a very targeted fashion to prevent wedging?

This is what McIntire wrote:

Enhancing spine stability is the principle underlying our approach to the management of AIS with quantified rotational trunk strengthening.

BTW, you are right about the recent McIntire study. The sample didn't show a strong torso rotation strength asymmetry. However their analysis was fascinating. They suggest that this probably narrows the strength asymmetry down to the paraspinal muscles (http://www.maxcohenmd.com/317/Image_14_400pix_DPUSA203.gif).

I believe that's what this recent study (http://www.ncbi.nlm.nih.gov/pubmed/16449906) found. I'm going to get a copy to learn the details.

Pooka1
07-11-2009, 06:52 PM
I would be far more impressed with the 4 month and 8 month findings IF those cases had a previously documented high rate of movement. If they didn't then the lack of a control group prevents any conclusions about exercise therapy slowing progression or exercise therapy decreasing small curves (since we know that happens spontaneously in many cases).

The far more likely explanation is that the curves moved less than or equal to 5* in the 4 month and 8 month periods in the smaller curves. Note the larger curves were not helped. In fact all the exercising patients may fall exactly on the progression potential predicted from the other variables (Risser, age, etc.). This is the one thing they had to show in order to conclude the exercises were accomplishing something. And they did NOT show this, at least in the abstract. I can't overemphasis this point enough. It is the ENTIRE game with this study.

I mean it would be equivalent to me claiming something else prevented curve progression and pick early time points that would certainly miss any measurable movement and then say the treatment worked. Had they had a control group, the progression rates would likely have been IDENTICAL to the study group given the average movement rate and the time period. I'm sorry but this study is ridiculous.

Think about the apparent stability in the non-compliant group at the 8 month mark. You would need patients with documented rates of progression that exceeded at least one point something a month in order to see an effect from exercise at 4 months. Unless they documented high enough rates to see a progression in 4 months and 8 months prior to enrolling patients, their conclusions are obviously not supported by the data. I don't know how else to say it.

I have not seen the entire report but at this point, this study appears to be among the worst that I have seen published in terms of extravagantly going beyond the results and wildly speculating without much if any ground to stand on.

Again, this condition is far too variable to say anything with 15 patients EVEN IF there was a control group of 15 patients to accompany it. Like a broken record, my identical twins continue, after almost two years, to have wildly different curve trajectories. That said, I don't think you have to be the mother of ID twins with wildly different curves to avoid the errors of thinking and analysis in that paper.

I am not trying to discourage you. I am saying the conclusions they reach in that study are obviously NOT supported by the data and I am floored it was published. If I'm wrong, please point out where.

Last, do the various camps within the "muscle asymmetry" group disagree about which muscle groups are asymmetric? Is this study in fact in contradiction to others that did find major muscle asymmetry? Why do some people find major asymmetry and some don't? It sounds like everyone isn't on the same page with measuring the same muscle groups in deciding if there is asymmetry.

That point, because it is so central, needs to be nailed down. If there is major disagreement on this point then there may be little hope for this hypothesis.

Dingo
07-11-2009, 07:51 PM
Pooka1

The longterm effects are unknown. Strengh training may continue to work or it might gradually lose it's impact.

However it is not credible to question the 4 and 8 months results. Scientists and physical therapists around the world have all consistently produced the same results.

Pooka1
07-11-2009, 09:50 PM
However it is not credible to question the 4 and 8 months results. Scientists and physical therapists around the world have all consistently produced the same results.

Physical therapists are not trained in research. And as we have seen, even folks trained in research produce false results/conclusions a majority of the time.

Without controls or proof the curves would have otherwise progressed absent exercise, they can't conclude that exercise did a thing. Most curves not in a growth spurt would not progress in those time periods. Some smaller curves not only will not progress but would decrease and even spontaneously resolve absent exercise. How do they determine if those things are happening APART from the effects of exercise? And how do they determine that in a 15 patient cohort?

That paper is embarrassing. I am considering writing to the editors about it making the same points I made here. I'll report back if I do that and if I get a response. Exercise therapy might work but you wouldn't be able to determine that from that study design.

Please explain to me exactly how they know the exercises did anything when they don't know the curves are going to progress measurably absent exercise in those time periods? Just because you are studying something doesn't mean it is responsible for any effects you detect. This is why controls are absolutely necessary. ANd even then there is room for doubt. Science is tough.

Please explain the mechanism by which exercise is supposed to work that relates to the known mechanism of vertebral wedging.

Thanks.

Pooka1
07-11-2009, 09:53 PM
The longterm effects are unknown.

Yes but we don't need to know the long-term, results when we have the 24 month results, yes?

It is a result to say that ~2/3 of patients will not keep up with even minor PT on a regular basis even to (hopefully) avoid surgery. That is the most interesting, DEFENSIBLE result in the paper as far as I can tell.

If ~1/3 kept up the exercises until at least 24 months, that is approximately FIVE patients. What did these curves do? Does it really matter when discussing FIVE people? I suggest not.

swimmergirlsmom
07-11-2009, 11:30 PM
Hi Dingo
I met Dr Mooney in December 2007. That is the month when my daughter was diagnosed with scoliosis (30L, 48T, 28C and Riser 4) and we were told she was on the borderline for surgery so I was busy researching conservative methods. I had found a posting for a Torso Machine related Scoliosis study on the internet, so I drove to Dr Mooney's office since it's only 10 minutes from where I live, but when I talked with him, he said that study had been cancelled. He also said my daughter's curves were likely outside the range where his exercises would help because he found that curves under 40 responded better. I can't quote him because it was over a year ago and I don’t remember exact words, but he said something to the effect of "even if exercises work, you can't get people to do them".

My daughter was very motivated to try exercises because she wants to try everything she can to avoid surgery, so we then looked into Schroth. By Feb 2008 my daughter was doing daily stretching and Schroth exercises, for 30-45 minutes a day. In Sept 2008, we had an xray that showed an approx 16 degree improvement of her Thoracic curve (measured at 32 degrees) and in March 2009 that xray showed it was slightly higher (34 degrees) but still much better than the original curve. My daughter did not do a schroth “pose” but instead just stood relaxed for the xray, because we wanted to see what her curves were in a natural state. It’s possible her curve is corrected even more while actively doing a schroth exercise.

My daughter is now 16 and we obviously do not know what the long term effects will be from doing Schroth exercises, but currently it appears there has been some correction from exercises. We are hoping that she can stay in the 30's and avoid pain and surgery. Right now, she is committed to doing these exercises for life, especially since they are not physically demanding (just require body sensing and concentration). My daughter thinks it’s no big deal to do Schroth exercises for a half hour a day, but then she also works out swimming or cycling 2+ hours a day (5 days a week) so she is very athletic minded.

By the way, I emailed Dr Mooney the Sept 2008 xrays and spoke with him over the phone last October and he was impressed with her results. We may schedule a consultation with him but at this point, we are happy with Schroth exercises and how simple they are (no machine required) so we do not want to change my daughter's current routine.

If anyone would like more details, please PM me and I will gladly give you more info. I seldom log onto NSF because I try not to be on the computer when I’m home, but will do my best to respond to you as soon as I can.

Pooka1
07-11-2009, 11:37 PM
Hi Dingo
I met Dr Mooney in December 2007. That is the month when my daughter was diagnosed with scoliosis (30L, 48T, 28C and Riser 4) and we were told she was on the borderline for surgery so I was busy researching conservative methods.

In Sept 2008, we had an xray that showed an approx 16 degree improvement of her Thoracic curve (measured at 32 degrees) and in March 2009 that xray showed it was slightly higher (34 degrees) but still much better than the original curve.

Just curious... did you have the same orthopedic surgeon measure the 48* and the 32*/34*?

Or did a chiro associated with Schroth measure the 32*/34*?

swimmergirlsmom
07-12-2009, 12:05 AM
Hi Sharon
The original Dec 2007 xray was read by 3 different Orthopedic Surgeons (45T, 48T and 50T) so we chose the middle number to use when referring to the original thoracic curve measurement, since it's closer to the average.

Both the original 48* and the 32* in Sept were measured by Orthopedic Surgeons. Same ortho office but different ortho surgeon measured the second xray.
There is a very visable difference between the curves on the two xrays, but of course we take into account the plus/minus 5* rule and it could always be a little more plus/minus than that (time of day, different xray technician, error in reading the measurements, etc) so we understand the numbers are not exact.

We're not working with a chiro. We found our Schroth physiotherapist on our own.

The Radiologist at Children's Hospital measured the last xray in March (34*) because in Sept our ortho said my daughter didn't need to come back for a follow up for 3-5 years, so we got the xray Rx from our pediatrician in March.

Dingo
07-12-2009, 01:21 AM
swimmergirlsmom


"even if exercises work, you can't get people to do them"

Evidently Dr. Mooney is correct about roughly 2 in 3 people. It's probably the same as weight loss. Most people would like to be thin and they know that diet and exercise work every time. However only a small percentage of people will stick with it for any length of time.

I know two women who had gastric bypass and both are obese.


He also said my daughter's curves were likely outside the range where his exercises would help because he found that curves under 40 responded better.

I'm sorry about that and I'm glad your daughter has done well with Schroth. My son has an 11 degree thorocolumbar curve which isn't bad but he also has a significant rotation and rib hump. Sadly he is just 5 years old. We are doing PT to try and hold it in place until he is 7 or 8 and can use the MedX machine. I believe the generic MedX costs about $6,000 brand new. I will gladly put off some other major purchase like a new car or TV and buy him a MedX. That's a small price to pay for a straight back and it's much easier to be compliant with a machine in the house.

Pooka1
07-12-2009, 06:43 AM
I had found a posting for a Torso Machine related Scoliosis study on the internet, so I drove to Dr Mooney's office since it's only 10 minutes from where I live, but when I talked with him, he said that study had been cancelled.

Did he mention why it was canceled?

In my field, lack of results is the reason why studies get canceled.

Pooka1
07-12-2009, 06:49 AM
Hi Sharon
The original Dec 2007 xray was read by 3 different Orthopedic Surgeons (45T, 48T and 50T) so we chose the middle number to use when referring to the original thoracic curve measurement, since it's closer to the average.

Both the original 48* and the 32* in Sept were measured by Orthopedic Surgeons. Same ortho office but different ortho surgeon measured the second xray.

Very good. I just wanted to ask because we had a recent case here where an orthopedic surgeon no less who invented a brace was irrationally exuberant in reading an in-brace radiograph.

Can I ask what the surgeons said about this decrease from Schroth? Did they seem surprised? Do you think they now think exercise works to permanently decrease a curve?


The Radiologist at Children's Hospital measured the last xray in March (34*) because in Sept our ortho said my daughter didn't need to come back for a follow up for 3-5 years, so we got the xray Rx from our pediatrician in March.

She is skeletally mature now, yes?

leahdragonfly
07-12-2009, 11:30 AM
Hi Dingo,

You have mentioned your son's significant rotation several times. Have you considered purchasing a Scoliometer (available from this website for about $49) to monitor his rotation at home? Apparently it is very easy to use, and it measures the degree of rotation at the largest portion of the rib hump. Some orthopedists use this in lieu of x-rays for routine monitoring of small curves such as your son's. It might be a way to ease your mind in between check-ups.

Take care,

swimmergirlsmom
07-12-2009, 12:24 PM
Can I ask what the surgeons said about this decrease from Schroth? Did they seem surprised? Do you think they now think exercise works to permanently decrease a curve?

She is skeletally mature now, yes?

Hi Sharon
We don't think that exercise has "permanently" decreased our daughter’s curve - I believe if she were to stop doing the exercises, it is likely that some or all of the "correction" would be lost, especially since she is skeletally mature and has not been growing since she started these exercises. My daughter intends to continue doing the Schroth exercises for life, and thankfully many of the exercises can be incorporated into every day living activities once you are experienced with Schroth, so we hope she will be able to continue with the exercises to maintain her curve.

Originally when my daughter was diagnosed, we were told by the orthos that it is impossible to improve the curves of an adult spine. When we had the 32* xray measurements read by the ortho, he had the old 48* xray right next to it, and he did not say anything to imply an improvement or permanent decrease in curves. We don’t know if in his mind he just didn’t want to give us false hope or if he had never seen results like this before, but he stayed cool and said it was “good news, you’re not too much worse” and that is all he would say. He had previously wanted to monitor my daughter every 6 months when she was 48* and skeletally mature, but after the 32* appt, he said my daughter could now come back in 3-5 years instead, so that was the only possible sign of “improvement” that the ortho gave us. Since she is not in the “surgery range” now, we just went to our pediatrician for the xray request in March. We will monitor my daughter’s spine once a year with a new xray, for the next two years while she is still at home. If she increases into the 40’s again, we will go back to the ortho.

It appears that schroth exercises have decreased my daughter's curve approx 14-16* for now and we don't know if she will be able to decrease it more or if the curve will increase (whether or not she does her daily Schroth exercises). Only time will tell what the long term results will be, so I am just sharing our current 17 month experience.

Pooka1
07-12-2009, 02:28 PM
Hi Sharon
We don't think that exercise has "permanently" decreased our daughter’s curve - I believe if she were to stop doing the exercises, it is likely that some or all of the "correction" would be lost, especially since she is skeletally mature and has not been growing since she started these exercises. My daughter intends to continue doing the Schroth exercises for life, and thankfully many of the exercises can be incorporated into every day living activities once you are experienced with Schroth, so we hope she will be able to continue with the exercises to maintain her curve.

Well that sounds rational.

But I'm wondering if anyone associated with Schoth told you she could stop exercising and would maintain the correction?

Also, did anyone say had your daughter started exercising while there was growth remainig that she could have permamently reduced her curve absent continued exercise?


Originally when my daughter was diagnosed, we were told by the orthos that it is impossible to improve the curves of an adult spine. When we had the 32* xray measurements read by the ortho, he had the old 48* xray right next to it, and he did not say anything to imply an improvement or permanent decrease in curves. We don’t know if in his mind he just didn’t want to give us false hope or if he had never seen results like this before, but he stayed cool and said it was “good news, you’re not too much worse” and that is all he would say.

Well that is interesting. I wonder if he thinks she might never progress at this point past the 48* because you got it down to 32*/34* but I'm just guessing.


It appears that schroth exercises have decreased my daughter's curve approx 14-16* for now and we don't know if she will be able to decrease it more or if the curve will increase (whether or not she does her daily Schroth exercises). Only time will tell what the long term results will be, so I am just sharing our current 17 month experience.

I agree Schroth reduced her curve about that much but would really like to know if the people at Schroth are telling you it is permanent.

Thanks for typing that testimonial.

Pooka1
07-12-2009, 03:13 PM
Taking one more swing at this...

My one daughter has has two documented 6-month periods where her curve did not increase measurably. Based just on how her back looked in the last three months which comes on the heels of a previously documented 6 month period of stability...

had she been enrolled in that study, she would have been counted as a SUCCESS for exercising for sure at four months and very likely for 8 months. All in the PLUS column for exercise stabilizing curves.

Please raise your hand if you doubt that for a single second.

Yet back in reality, she didn't do a lick of targeted exercise and not much exercise to speak of at all. And STILL her curve definitely didn't increase measurably in the 6 months and very likely still hasn't progressed measurably by 8 months.

Thus the researchers would have been fooled into thinking the exercise caused the stability. This study should be a poster child for the need for control groups or at least documented high curvature rates.

Unless and until they can demonstrate the patients in the study were in a growth spurt or otherwise had a documented high rate of curvature right before entering the study, they simply can't make the conclusions they did.

FULL STOP.

Pooka1
07-12-2009, 03:16 PM
Dr. Douglas Kiester told me essentially the same thing (http://www.scoliosis.org/forum/showthread.php?t=8948). First the spine rotates and then growth pushes out the lateral curve.

And yet my one kid has a curve measured as high as 40* with virtually no rotation.

How is that possible under Kiester's hypothesis?

I look at my kid's back. It doesn't look like it is progressing either in angle or rotation. It seems locked at ~40*. I am going to ask the surgeon what the maximum bend a unrotated spine can achieve. It just may be ~40*.

swimmergirlsmom
07-12-2009, 06:53 PM
Well that sounds rational.

But I'm wondering if anyone associated with Schoth told you she could stop exercising and would maintain the correction?

Also, did anyone say had your daughter started exercising while there was growth remainig that she could have permamently reduced her curve absent continued exercise?

Well that is interesting. I wonder if he thinks she might never progress at this point past the 48* because you got it down to 32*/34* but I'm just guessing.

I agree Schroth reduced her curve about that much but would really like to know if the people at Schroth are telling you it is permanent.

Thanks for typing that testimonial.

Hey Sharon
When we were told that it is impossible to improve the curve of an adult spine, I believe our orthos were referring to bracing. None of them believed that exercises could improve scoliosis curves. I have read of some curves improving with bracing (when still growing, not an adult spine) so I assume it's possible that curves could improve while doing targeted exercises too, and that it could be a more "permanent" correction since the spine would be growing in that corrected way. I don't have facts to back that up, though. Just my thoughts.

Nobody told us that if my daughter stops her exercises, that she will hold her 14-16* correction. Our Schroth physiotherapist never even made promises that my daughter's curve would improve at all from doing the exercises. We only started this approach last year because we were hoping to "hold" our daughter's curve from getting worse, so the 14-16* improvement was a "bonus"! :)

Pooka1
07-12-2009, 07:07 PM
Well I find the whole situation with your daughter eye opening. I can't recall anything close to that type of reduction from exercise alone except Hawes.

So that's two.

I'm going to mention this to our surgeon to see if he is aware that exercise can reduce a curve at least temporarily 14*-16*. He may not be aware of that.

LindaRacine
07-12-2009, 11:57 PM
Sharon...

Elise Browning Miller (Yoga for Scoliosis) has reduced her curves significantly with daily yoga exercise. I've seen the before and after myself. I can't remember the degrees, but we're not talking a small curve. Elise feels the improvement is permanent. Obviously, I don't agree. I don't know how many hours each day she exercises, but it's a lot.

Regards,
Linda

mamamax
07-13-2009, 05:58 AM
SEAS exercises revert progression of adult scoliosis:
a retrospective long-term study (SOSORT 2009)
http://scoliosisjournal.com/content/4/S1/O55


Background: Formal papers regarding the efficacy of exercise in adult scoliosis are few.

Aim: To verify, if the natural history of adult scoliosis can be modified by exercises.

Study design: Retrospective pre-post study.

Results

Exercises caused a statistically significant decrease of 3.6 ± 5° of scoliosis (-3.2 ± 4.3° per year): 1 patient progressed, 45% improved; in sub-group A results were identical, after a previous worsening of 9.7 ± 6.8° (+2.1 ± 4.3° per year); in sub-group B stopping exercises caused a progression of 8.3 ± 3.8° (+1.4 ± 0.5° per year). The best results were observed in patients exercising since, even if some patients continued to decrease their curve during the year
Conclusion

SEAS exercises revert the progression of adult scoliosis, and a prospective study is already under way. The different results according to length of treatment could be due to a plateau of correction or to an increase of quality of the protocol applied (SEAS changes continuously according to new knowledge in the literature). These results question the immediate need for surgery when facing progression of deformity in adulthood.


I wrote the first author on the paper "Adult scoliosis can be reduced through specific SEAS exercises: a case report", received a nice reply and the following web link for information and full reports: http://www.isico.it/approach/default.htm

The Textbook:
THE EVIDENCE BASED ISICO APPROACH TO SPINAL DEFORMITIES
http://www.isico.it/approach/summary.htm

Email address for further questions is also within this web page.

Pooka1
07-13-2009, 02:41 PM
Sharon...

Elise Browning Miller (Yoga for Scoliosis) has reduced her curves significantly with daily yoga exercise. I've seen the before and after myself. I can't remember the degrees, but we're not talking a small curve. Elise feels the improvement is permanent. Obviously, I don't agree. I don't know how many hours each day she exercises, but it's a lot.

Regards,
Linda

Okay that's three.

Just curious... does she have some rational reason why she thinks the improvement is permanent or is it wishful thinking?

Dingo
07-13-2009, 04:52 PM
Great find mamamax!

I'm surpised that physical therapy works in adults but who am I to question something that appears to work.

I'm beginning to suspect that just about any type of strength training is helpful for kids with Scoliosis. Of course like diet and exercise for weightloss the key is doing it.

This gem is from the recent McIntire study:

It is well recognized that the incidence of scoliosis progressing to 20 degrees or more is much higher among girls than boys. Girls may be more vulnerable to scoliosis progression because of the difference in trunk musculature. AIS girls are less mesomorphic than controls. Trunk flexion and extension strength in young girls, but not boys, decreases from the juvenile to the adolescent years.

I think it's amazing that trunk strength in girls actually goes down as they get older. WOW! That might explain why scoliosis in adolescents is something like 9 girls to 1 boy. In juveniles the ratio is about 1 to 1.

LindaRacine
07-13-2009, 07:02 PM
Okay that's three.

Just curious... does she have some rational reason why she thinks the improvement is permanent or is it wishful thinking?

When I challenged that I thought her curve would reappear if she ever stopped exercising, she did not respond.

--Linda

Ballet Mom
07-19-2009, 10:02 AM
Dingo,

It looks like Dr. Mooney is continuing with his research at his own facilities. :)

Good luck to your son! Thanks for pointing out Dr. Mooney's research to me.



Non-Surgical Scoliosis Study

Introduction
This study provides specific strength-training exercise for adolescents with idiopathic scoliosis. It has been demonstrated that all patients with adolescent idiopathic scoliosis are weaker rotating their torso to one side versus the other. To correct that, measured strength training on specific equipment is used as a treatment of the curvature. Preliminary experience indicates that this treatment may stop curve progression and may improve the curve.

Objective
The objective of this study is to test the effectiveness of using this specific strength-training program in stopping the progression of the curve in larger numbers of scoliosis individuals.

Overview of study design
Patients will participate in this strength-training program on specific equipment in the study centers two times per week.

Patients will be required to provide a copy of their current spine x-ray prior to beginning the study, and to provide copies of x-rays completed throughout the duration of the treatment.

The treatment is free for those who provide copies of their baseline and follow-up x-rays for the first three months.

Study Sponsor
US Spine and Sport Foundation (www.spineandsport.com)

Status
Recruiting

Eligibility

All scoliotic adolescents who are still growing, age 10 and up, male or female

X-Rays documenting a spinal curvature of more than 10 degrees and less than 45 degrees


Available to participate in strength training twice a week for 5 -15 minute sessions on special exercise equipment


All participants must bring copies of baseline X-rays and then have follow-up X-rays about 3 months later, and bring copies of these to the therapist.
Listing of Clinical Sites Involved in this Research

http://www.spineandsport.com/foundation/Research/Scoliosisstudy.htm

betty14
07-19-2009, 11:59 AM
Sharon...

Elise Browning Miller (Yoga for Scoliosis) has reduced her curves significantly with daily yoga exercise. I've seen the before and after myself. I can't remember the degrees, but we're not talking a small curve. Elise feels the improvement is permanent. Obviously, I don't agree. I don't know how many hours each day she exercises, but it's a lot.

Regards,
Linda

[/QUOTE]
Originally Posted by Pooka1

Okay that's three.

Just curious... does she have some rational reason why she thinks the improvement is permanent or is it wishful thinking?

[/QUOTE]


Regarding the above exchange:

Linda, since you do not know how many per day she exercises, how do you know it is "a lot"? A person who enjoys working out may find an hour per day little, whereas a sedentary person may find 10 minutes per day too hard to manage. Is there any way for you to find out?

It is likely that if the lady continues her routine, her improvement will be longstanding, and she will be much better able to fight against the post-menopause worsening of her scoliosis.

This person clearly has put a lot of work into making positive changes in her body, and I find Pooka's comment about "wishful thinking" quite insulting.
Nothing in life is permanent, including life. But if this lady maintains her structure and function into her elderly years, with significantly less deterioration than others who did not take her course of action, isn't that to be applauded? And so what if she has to continue to exercise for the rest of her life? A sedentary lifestyle, what I call physical lazyness (when there is no physical reason that makes a person unable to be active), is a problem in our modern society.

B.

leahdragonfly
07-19-2009, 12:04 PM
Hi Betty,

I find your posts fascinating and informative. Would you mind elaborating on your comment about post-menopause worsening of scoliosis? Is this common? If so, what is the reason.

Thanks!

Pooka1
07-19-2009, 12:06 PM
As far as I can tell, Mooney's own group funded his study.

He is self-funded.

It is impossible to overemphasize the importance of this point.

I wonder if he ever tried to compete for funding on the basis of scientific merit and results in hand, maybe from SOSORT (if they have that sort of thing) or even a mainstream research funding agency.

I have heard of one or two independently wealthy research scientists in my field who fund their own research. I haven't followed it but I have to wonder if they publish much without vetting of their ideas.

LindaRacine
07-19-2009, 12:09 PM
Linda, since you do not know how many per day she exercises, how do you know it is "a lot"? A person who enjoys working out may find an hour per day little, whereas a sedentary person may find 10 minutes per day too hard to manage. Is there any way for you to find out?

It's how she makes her living. I would estimate that it's on the order of 40 hours a week.

http://www.yogaforscoliosis.com



And so what if she has to continue to exercise for the rest of her life?

Sharon can obviously speak for herself, but I suspect her point is that it's unlikely that the most of us are willing to spend 40 hours a week for the rest of our lives, to retain any correction.

Pooka1
07-19-2009, 12:12 PM
This person clearly has put a lot of work into making positive changes in her body, and I find Pooka's comment about "wishful thinking" quite insulting.

I find your casual insouciance towards laying out the facts that people likely most want to know like is the correction permanent very troubling.

You know or should know that folks are looking for long term solutions. Read Mamamax's posts. They are instructive and representative. Exercise, since health problems may interfere with it, is not a long term solution if you are hospitalized and can't exercise and lose all your hard won improvement.

Do you ever consider those things? Not everyone can maintain an exercise regime every damn day for the rest of their life and it isn't necessarily due to being lazy for chrissake.

Pooka1
07-19-2009, 12:13 PM
It's how she makes her living. I would estimate that it's on the order of 40 hours a week.

http://www.yogaforscoliosis.com

Welp, that beats Hawes. And here I was impressed with Hawes doing it for 4 hours a day for several years.

Pooka1
07-19-2009, 12:14 PM
Sharon can obviously speak for herself, but I suspect her point is that it's unlikely that the most of us are willing to spend 40 hours a week for the rest of our lives, to retain any correction.

Some of us non-yoga instructors have families and non-exercise-related careers.

Newsflash for certain exercise professionals.

Pooka1
07-19-2009, 03:37 PM
Nothing in life is permanent, including life. But if this lady maintains her structure and function into her elderly years, with significantly less deterioration than others who did not take her course of action, isn't that to be applauded? And so what if she has to continue to exercise for the rest of her life?

By the way, the same potential criticism of bracing applies to exercise... that of potentially delaying versus avoiding surgery when there are many good reasons to get fusion at a younger versus older age.

If folks get old enough, they might not have the ability to do the hours(?) a day to maintain the stability and would not necessarily be well situated to tolerate surgery.

mamamax
07-19-2009, 04:05 PM
Originally Posted by Pooka1

Okay that's three.

Just curious... does she have some rational reason why she thinks the improvement is permanent or is it wishful thinking?

[/QUOTE]


Regarding the above exchange:

Linda, since you do not know how many per day she exercises, how do you know it is "a lot"? A person who enjoys working out may find an hour per day little, whereas a sedentary person may find 10 minutes per day too hard to manage. Is there any way for you to find out?

It is likely that if the lady continues her routine, her improvement will be longstanding, and she will be much better able to fight against the post-menopause worsening of her scoliosis.

This person clearly has put a lot of work into making positive changes in her body, and I find Pooka's comment about "wishful thinking" quite insulting.
Nothing in life is permanent, including life. But if this lady maintains her structure and function into her elderly years, with significantly less deterioration than others who did not take her course of action, isn't that to be applauded? And so what if she has to continue to exercise for the rest of her life? A sedentary lifestyle, what I call physical lazyness (when there is no physical reason that makes a person unable to be active), is a problem in our modern society.

B.[/QUOTE]
__________________________________

Bingo!

It is not that exercise does not work - it is that folks will not exercise and most will do anything to avoid it altogether! The exception to the rule being few. I personally would be quite happy to sacrifice an hour a day to Schroth for wellbeing ... but i would try to get away with every other day ;-)

ok - what IF someone cannot exercise (for whatever reason) what will happen? Well heck fire they will go to waste! And this is true for both those who have had surgery as well as for those who have not.

I imagine Elise was speechless at the prospect of not exercising - for her it is a way of life! Martha, more driven than most - maintains her correction with one (1) hour per day (per her memoir). There are many more out there - we just don't know them personally.

Pooka1
07-19-2009, 04:12 PM
ok - what IF someone cannot exercise (for whatever reason) what will happen? Well heck fire they will go to waste! And this is true for both those who have had surgery as well as for those who have not.

I'm buzzing you on that.

Exercise is clearly NOT required to maintain surgical correction. Where did you get that?

My daughter does not exercise and has maintained her correction for sure for 8 months and almost certainly to date (that is, 16 months and counting). It was 5* a few days after the surgery and 5* 8 months later. Your explanation is....?

Nor is it a particularly good idea for potential Marfan people to exercise. To the extent that some measurable percentage of scoli patients have Marfans, blanket admonitions that they should exercise are not only unwarranted but dangerous, whether they have been fused or not.

Remember, quality information always. No second rate, incorrect stuff like that which has been regularly wowing you.

mamamax
07-19-2009, 04:16 PM
I'm buzzing you on that.

Exercise is clearly NOT required to maintain surgical correction. Where did you get that?

My daughter does not exercise and has maintained her correction for sure for 8 months and almost certainly to date (that is, 16 months and counting). Your explanation is....?

Nor is it a particularly good idea for potential Marfan people to exercise. To the extent that some measurable percentage of scoli patients have Marfans, blanket admonitions that they should exercise are not only unwarranted but dangerous, whether they have been fused or not.

Remember, quality information always. No second rate, incorrect stuff like that which has been regularly wowing you.

ok I don't mind being buzzed. I was talking about us more well seasoned adults. But actually - say someone, anyone is incapacitated for long period of time - muscles atrophy. Are you saying that those with spinal fusion will be immune to the effects of that?

Pooka1
07-19-2009, 04:20 PM
ok I don't mind being buzzed. I was talking about us more well seasoned adults. But actually - say someone, anyone is incapacitated for long period of time - muscles atrophy. Are you saying that those with spinal fusion will be immune to the effects of that?

Yes.

The spine is either fused or it isn't.

The correction is not reliant on muscle... it's a block.

Where do you get these ideas?

ETA: Do you understand what happens in a fusion? I am wondering now. Your question implies you do not.

mamamax
07-19-2009, 04:23 PM
Wow .. I had no idea that people with fused spines were completely immune to the effects of muscle atrophy due to long term incapacitation. Is there a reference for that or is it just such common knowledge that everyone knows this but me?

Pooka1
07-19-2009, 04:23 PM
Moreover, I would bet my house we could find any number of fused folks who don't exercise and whose fusion is stable long term.

Did you hear about exercise required to maintain surgical correction on Fix's site?

Pooka1
07-19-2009, 04:24 PM
Wow .. I had no idea that people with fused spines were completely immune to the effects of muscle atrophy due to long term incapacitation. Is there a reference for that or is it just such common knowledge that everyone knows this but me?

Are you serious?

Do you understand what a fusion is?

Is my daughter's stability absent a lick of meaningful exercise a fluke? What is your explanation for that?

Pooka1
07-19-2009, 04:25 PM
Wow .. I had no idea that people with fused spines were completely immune to the effects of muscle atrophy due to long term incapacitation. Is there a reference for that or is it just such common knowledge that everyone knows this but me?

Stop reading Fix's site and start reading quality information on surgery.

mamamax
07-19-2009, 04:28 PM
Touche'

No I did not hear about exercise being good for everyone (fused or not) from Fix's site.

Actually thought it was common knowledge and am blown away to hear you state that fused spines are immune to muscle atrophy.

Is there a reference for that?

Pooka1
07-19-2009, 04:34 PM
Touche'

No I did not hear about exercise being good for everyone (fused or not) from Fix's site.

Actually thought it was common knowledge and am blown away to hear you state that fused spines are immune to muscle atrophy.

Is there a reference for that?

I didn't say that. You said that in your confusion.

I said muscle atropy doesn't affect surgical correction because it is permament (assuming a solid fusion) AND NOT DEPENDENT ON MUSCLE TONE whereas muscle atropy DOES affect any exercise-induced correction because it isn't permament.

Do you see that critical distinction? We can't get anywhere until you do.

How does my daughter maintain her 5* for several months absent a lick of exercise in your opinion? Magic?

Now map that onto exercise where I'm guessing the correction would be lost in weeks or a few months I'm guessing.

Pooka1
07-19-2009, 04:36 PM
I'm going to suggest you read up on what fusion is.

This section of the thread is actually beyond absurd but you don't know why.

Pooka1
07-19-2009, 04:41 PM
Do people who break their arm bone and have it set successfully have to do exercises to maintain the set?

Same answer for spinal fusion.

mamamax
07-19-2009, 04:46 PM
My question was : say someone, anyone is incapacitated for long period of time - muscles atrophy. Are you saying that those with spinal fusion will be immune to the effects of that?

Your answer was:




Yes.



So I can see were I may be confused!

In speaking of older adults - not children - muscle atrophy is a concern for everyone ... i do not believe that senior citizens are an exception just because they are fused.

Pooka1
07-19-2009, 04:49 PM
My question was : say someone, anyone is incapacitated for long period of time - muscles atrophy. Are you saying that those with spinal fusion will be immune to the effects of that?

Your answer was:



So I can see were I may be confused!

In speaking of older adults - not children - muscle atrophy is a concern for everyone ... i do not believe that senior citizens are an exception just because they are fused.



I am NOT saying muscles won't atropy in fused people of any age nor that is isn't a concern. You are having multiple Emily Litella moments.

I am saying that muscle atropy won't affect a solid surgical fusion whereas it WILL affect an exercise-related correction.

The COBB angle will NOT change in a surgical fusion due to muscle atropy whereas it WILL change with exercise-related corrections. This is obvious to anyone who understand what fusion is.

I think you understand this.

mamamax
07-19-2009, 05:05 PM
I am NOT saying muscles won't atropy in fused people of any age nor that is isn't a concern. You are having multiple Emily Litella moments.

I am saying that muscle atropy won't affect a solid surgical fusion whereas it WILL affect an exercise-related correction.

The COBB angle will NOT change in a surgical fusion due to muscle atropy whereas it WILL change with exercise-related corrections. This is obvious to anyone who understand what fusion is.

I think you understand this.

Sharon - I asked a question - you answered ... yes.

And now you accuse me of multiple moments?

Good grief (and bolderdash)!

Also cobb angle after fusion can and does unpredictably increase - not in every case - but often enough that it is a concern.

http://www.pssjournal.com/content/2/1/25

What I think I understand is this - it is just good old fashioned horse sense that exercise is good for everybody.

Pooka1
07-19-2009, 05:16 PM
Any time someone cites that Weiss "debate" "article" I am going to assume they are conceding my point.

Word to the wise.

Note the article was written in 2008 and Weiss cites stats from 1961 to 1976 (on the topic of fusion failure).

Seem intellectually honest to you? Maybe it does.

Or maybe we are on Candid Camera. :eek:

Pooka1
07-19-2009, 05:21 PM
For the honest folk out there... the state of the art now is that ~95% of the kids who are fused need no physical restriction to get a good fusion.

That should inform you as to what the expected pseudarthrosis rates are now (as opposed to historically using older hardware).

I don't know the situation with adults but I bet it's much better than in the 60s and 70s. Note to Weiss and Mamamax. :rolleyes:

mamamax
07-19-2009, 05:27 PM
Assume nothing .. many of his references come right up to 2008.

I know you don't like Weiss - he does shoot straight from the hip.

A little like you actually ;-)

Thing is Sharon - there are no long term studies for the most recent surgical methods - it is a little early to deem them complete success.

Pooka1
07-19-2009, 05:33 PM
Assume nothing .. many of his references come right up to 2008.

Not the ones that are relevant to your point. Are you following along here?

It's like you say "A" and I say "Not A, but B" and you say, "But what about C?" where "C" is completely irrelevant.

Pooka1
07-19-2009, 05:34 PM
Thing is Sharon - there are no long term studies for the most recent surgical methods - it is a little early to deem them complete success.

What's Schroth's excuse then? They have been at it for over 90 years?

mamamax
07-19-2009, 05:37 PM
Not the ones that are relevant to your point. Are you following along here?

It's like you say "A" and I say "Not A, but B" and you say, "But what about C?" where "C" is completely irrelevant.

Yes .. I am following along just fine. And while I do hope for the best ... there are no long term studies that can claim the most recent surgical methods are a complete unquestionable success. We will know more 30 years from now.

mamamax
07-19-2009, 06:18 PM
What's Schroth's excuse then? They have been at it for over 90 years?


Schroth Studies and where they are found:

http://www.schrothmethod.com/studies.html

and some quoted material:

Spinal fusion surgery does not eliminate the need for physical therapy to correct patients' posture and maintain stability above and below the fused segment. Nine exercises are described and depicted.

Lehnert-Schroth, Christa. "Physiotherapy for scoliosis patients following spinal fusion surgery." Krankengymnastik 48 (1996): 212-219.

For an English translation of the original German article (PDF), see the page "What can patients do?" at Christa Lehnert-Schroth's personal website: http://www.schroth-scoliosis-treatment.com

Pooka1
07-19-2009, 06:36 PM
Schroth Studies and where they are found:

http://www.schrothmethod.com/studies.html

and some quoted material:

[I]Spinal fusion surgery does not eliminate the need for physical therapy to correct patients' posture and maintain stability above and below the fused segment.

How the heck would they know? Is that a joke?

I guess my daughter is the only patient in the world who doesn't need to do a lick of exercise to have normal posture and a straight spine. I'll have to remember to get her autograph.

I, on the other hand, have to work very hard at good posture, much to the dismay of my horse who wishes I would get it already. :( (:))

I have concluded we are at cross purposes. I don't know what your purpose is.

I am guessing by your reference to two surgeries and likely a third that someone told you a long time ago that you would need an anterior/posterior procedure that might need to be extended at a later date.

That is no reason to be afraid of surgery... there are people here who have all that.

I wish you would get an opinion or five from a top scoliosis surgeon who specialize in mature spines.

I suspect many, if not most, of your thoughts and recollections from the past will go straight out the window.

Good luck. I'll look forward to hearing about it if you do get some straight dope on your present surgical options.

Pooka1
07-19-2009, 06:58 PM
I know you don't like Weiss - he does shoot straight from the hip.

By the way, that is not why I take issue with him. And shooting straight from the hip implies lack of thought prior. He knows exactly what he is saying. Is that another attempt to claim surgeons are idiots?

Can you guess the real reason I take issue with that article?

mamamax
07-19-2009, 07:06 PM
Sharon -

How would the Schroth folks know that physical therapy would help to stabilize the spine above and below fusion? Through the many years of experience and a review of the published literature. Blowing discs above and below fusion levels is not a thing of the past.

Your daughter is young and I'm happy for her success - with age, exercise may prove beneficial to maintain that success - worth looking into?

Your horse may appreciate it if you took some Alexander method posture lessons?

We do have opposing opinions. My purpose - is no more than Battina's: to stay as upright, strong and pain free as I can, as long as I can.

And again - I do not think surgeons are idiots - Weiss is a surgeon, one who bty endorses surgery upon occasion.

I am not afraid of surgery. Truly I've had all the "opinions" I need to have - I choose a different path until such time that methods in my age group are more refined. If I can live the rest of my life without it - that would be good. But if you can refer me to the top surgeon in the US for the aging, I'll keep the info in my back pocket ;-)

In the mean time, I'm doing darn well with present treatment - thank you, and all the best to you and yours as well.

Pooka1
07-19-2009, 08:00 PM
Your horse may appreciate it if you took some Alexander method posture lessons?

You aren't the first person to suggest that. :)

mamamax
07-19-2009, 08:42 PM
And probably won't be the last ;)

betty14
07-19-2009, 09:14 PM
I find your casual insouciance towards laying out the facts that people likely most want to know like is the correction permanent very troubling.

You know or should know that folks are looking for long term solutions. Read Mamamax's posts. They are instructive and representative. Exercise, since health problems may interfere with it, is not a long term solution if you are hospitalized and can't exercise and lose all your hard won improvement.

Do you ever consider those things? Not everyone can maintain an exercise regime every damn day for the rest of their life and it isn't necessarily due to being lazy for chrissake.



Nope, I never consider those things!


Actually, I have an education in rehabilitaion science with 9 years of clinical practice, and have taken dozens of courses on manual and myofascial therapy, therapeutic exercise, interdisciplinary management, clinical skills development, and evidence based practice. I attended a achool with a self-directed learning philosophy and have spent many hours as a student and clinician scouring Medline and related databases.

I have learned to combine the best available evidence with what is known from the basic sciences and my own and others' clinical experience, and refer to other disciplines when I am unable to help. That is called evidence based practice.

Because you are not a health care provider (that I know anyway) it is likely that your point of view is informed only by one factor, which is the literature. The research is an immensely important part of the picture, obviously, but it is incomplete in 2009 and often flawed, with need for further study in many areas. The research needs to be combined in the real world with all the other factors to provide care to real individuals that need help now.

I am in no way casually dismissing facts. However I often feel from your style of writing that you casually dismiss people who use a therapautic exercise approach to manage their scoliosis pain and deformity.

If you would read my post again, you will see that it does not try to argue that the woman's curves are permenantly reduced. I try to be very careful with the language I use, as you are correct in your belief that many people "lay people, I'll call them", do in fact misinterpret some of what they read, and draw erroneous conclusions.

Regarding my phrase of "physical laziness" - many poeple with chronic pain (myself included) have at one time or another put off doing their exercises using the following excuses:

"I'm too tired"
"I'm too depressed to bother"
"I don't know where to even start, my situation is so bad"
"I'll do an extra good job tomorrow"

I have used all of these myslf, even nowadays, when my pain is well managed and my deformity reduced (as long as I do my 2-3 hours per week of corrective excercises). Part of my job is to help people overcome these barriers to success.

Also, if you read again how I define my personal phrase of physical laziness, you will see that it does not include people who are physically unable to exercise, a catergory that most hospitalized patients (unless they are at a rehab hospital) fall into.

If there is anyone else out there that has read my 40-odd posts and agrees with your assessment that I am one of the people who is "lightheartedly unconcerned" about facts (I had to look that one up, do you carry a thesaurus with you or what?), then please let me know that I have done a poor job communicating.

Unrelated to scoliosis, I want to add that you have posted on more than one occasion that religious comments should not be used anymore. You were obviously angry when you wrote that last bit, but perhaps you could use non-R-words next time to express yourself? Maybe take a prominant athiest's name in vain instead?

B.

betty14
07-19-2009, 09:27 PM
Some of us non-yoga instructors have families and non-exercise-related careers.

Newsflash for certain exercise professionals.


How many times have you posted that one should not make assumptions!

And yet here you are ASSUMING that this particular yoga instructor does yoga for forty hours per week, just because Linda Racine THINKS she is a full time instructor who may work 40 hours per week.

Possible alternatives:

- she COULD spend the classes instructing others via demonstrations, and walking about the group correcting the postures of the exercisers much of the time. (this is what most instructors do, as they have to focus on the client's workout, not their own).

- she COULD run the studio, and actually only teach a class or two per day

Honestly, I am ashamed of you right now! And pointing this out to me as a news flash! Really!!!

If you'd like to know the answer to the question - how many hours per day does she exercise? - why don't you ask her, and then get back to me with a fact, not an assumption.

Is there a smilie for shame because I need it right now. B.

LindaRacine
07-19-2009, 09:48 PM
And yet here you are ASSUMING that this particular yoga instructor does yoga for forty hours per week, just because Linda Racine THINKS she is a full time instructor who may work 40 hours per week.


No, I actually know her. And, I know she works full time. I just don't know if she works 40 hours a week. It could be more.

Pooka1
07-19-2009, 10:45 PM
I apologize if I misunderstood your writing.

You certainly don't need a PhD to understand the literature or even do valuable research.

But you do have to be trained in research techniques, study design, and approaches that avoid or minimize errors in interpretation.

It is almost impossible to be clear enough when folks don't have the requisite training. See my thread on the thread on Fix's site about rod breakage in minimally invasive fusion for a textbook example. Fix, a doctor of chiro, knows what he knows but CLEARLY doesn't know thing one about surgery. Yet he is leading people into ignorance in a blind leading the blind fashion and scaring the hell out of folks.

Despite your 40 odd posts here, I can bet a significant fraction of folks here still don't realize that PT, while effective for pain in some cases, is NOT a permanent treatment for decreasing curves in mature spines though I think it is an open question for growing spines just like bracing is an open question.

Again, it's almost impossible to be clear.

And last, I don't think it is realistic that most people can exercise enough over the long term just considering hospitalizations and other exigencies without even getting into "laziness." That was my point. I had a ruptured ectopic. They cut my ab muscles. I couldn't stand up straight for the longest time much less exercise. Other people have other conditions. Women get pregnant. How do these people feel when their hard won gains are loss in a relative blink of the eye? It's almost setting them up to fail as much as the kids who wore braces for years who still needed fusion.

Life is short.

Pooka1
07-19-2009, 11:07 PM
By the way, just to be clear, what is your opinion of the respective evidence cases for decreasing curves permanently via:

1. surgical fusion?
2. PT?
3. bracing?

Mamamax keeps trying to suggest variously that all is unknown or all these approaches are on an equal evidentiary footing as I understand her posts (and I am NOT claiming I do).

Do you agree all three treatments are on a equally known or unknown evidentiary footing in terms of permanently decreasing curves?

Or is there a real difference between:

1. on the one hand let's say a particular surgical approach or particular surgical hardware which is being improved so fast based on the results of the previous generation of approaches and hardware that there is hardly ever time to establish a long term study,

2. and on the other hand, let's say bracing and PT, some of which have been around for almost 100 years, where there is still no real evidence of permanent curve reduction?

Wouldn't it be wrong to elide that very real difference for a lack of long-term studies?

txmarinemom
07-19-2009, 11:50 PM
My question was : say someone, anyone is incapacitated for long period of time - muscles atrophy. Are you saying that those with spinal fusion will be immune to the effects of that?

Define a "long period of time". I was up walking the day after surgery, recovered solo and walked an AIDS 5K at 33 days post-op. No one I know would consider that "incapacitated". Neither would they consider my release from all but 3-4 restrictions at 4 months post-op "incapacitated".

Surely I wasn't "incapacitated" when I returned to sliding on the ballfield at 7 months?

It's funny to hear someone who hasn't had surgery ~describe~ surgical effects. At least I've BEEN where you are. You're simply projecting.

The erector spinae can atrophy after fusion (they can also - and often do - in a brace, BTW ... *any* brace ... *any* age), but the effect from atrophy in a FUSED patient would be PAIN, not correction reversal.

Unfused, braced *and* "seasoned" (with poor muscle tone to start)? Possible curve progression.

The erector spinae can also be strengthened (for pain relief) by exercises in a fused OR unfused patient ... regardless of how "seasoned" that patient is.

Pam

mamamax
07-20-2009, 05:30 AM
Hello Pam -

You are quoting me (out of context) regarding a conversation I had with Sharon - which we have finished. So - I'm not going to comment on your comments :rolleyes:

mamamax
07-20-2009, 06:10 AM
No curve progression in Schroth patients 3 years after treatment
This preliminary study begun in 1989 included 181 scoliosis patients, average age 12.7 years, average Cobb angle curvature 27 deg, average risser sign 1.4, average follow-up 33 months. Results of the preliminary study were compared to natural history as known from literature. For the worst-case analysis additionally a questionnaire was sent to the non-repeaters treated at the same time (1989 and 1990) as the patient sample, using essentially the same inclusion criteria. Results showed no curve progression (increase in curvature of 5+ deg/yr). The lack of progression of the 181 patients from the preliminary study and the 116 questionnaire patients together exceeded natural history even if all drop-outs were considered failures. Weiss HR, Lohschmidt K, el-Obeidi N, Verres C. "Preliminary results and worst-case analysis of in patient scoliosis rehabilitation." Pediatric Rehabilitation 1997 Vol. 1(1): 35-40.

Schroth reduces abnormal curves by over 30% and increases lung capacity
Out-patient Schroth therapy of 50 patients at the Physical Therapy and Rehabilitation School, Hacettepe University, Ankara, Turkey, reduced average Cobb angle from 26.1 to 17.85 deg in one year. Vital capacity increased by 420 ml. Otman S, Kose N, Yakut Y. "The efficacy of Schroth's 3-dimensional exercise therapy in the treatment of adolescent idiopathic scoliosis in Turkey." Saudi Medical Journal (9/2005), vol. 26(9):1429-35.

Book dispels common misconception that exercises do not help correct scoliosis
Despite nearly 90 years of Schroth therapy in Germany, conventional Anglo-American medicine still commonly asserts that physical exercises have no effect on scoliotic curvature. In her book, Dr. Martha Hawes reviewed the pertinent clinical, peer-reviewed literature in English and demonstrated conclusively that there is no scientific basis for this belief. The articles sometimes referred to as sources for this claim do not in fact make and support it with evidence. In contrast, Hawes found a growing literature in English testifying that properly designed exercises can have a positive effect on scoliotic curves. She devotes pages 99-105 of her book to a discussion of the Schroth program. Martha Hawes, Scoliosis and the Human Spine, Tucson, West Press, 2002.

Reference: http://www.schrothmethod.com/studies.html

Pooka1
07-20-2009, 07:49 AM
Define a "long period of time". I was up walking the day after surgery, recovered solo and walked an AIDS 5K at 33 days post-op. No one I know would consider that "incapacitated". Neither would they consider my release from all but 3-4 restrictions at 4 months post-op "incapacitated".

Surely I wasn't "incapacitated" when I returned to sliding on the ballfield at 7 months?


I think Betty knows the rate of muscle loss/atrophy after stopping exercise. In horses it is about two weeks or even less in my estimation.

I had Dengue Fever at one point while living in Puerto Rico. I was so sick that I don't even fully remember some of that time. I would say I could not have exercised in a meaningful way for at least a month and likely more. Let's assume at the time I had been desperately exercising for 10 years to hold my curve to avoid surgery. I wonder how much ground I would have lost? How much of that would be a permanent loss?

Maybe I'm unusual but I think it is highly unrealistic to expect long term exercise to hold a curve if only because folks can't always exercise long term through no fault of there own. And when you layer on other sicknesses that aren't so severe and days when you hurt too much to want to exercise, it just seems unrealistic. But what do I know?

Pooka1
07-20-2009, 07:00 PM
Unrelated to scoliosis, I want to add that you have posted on more than one occasion that religious comments should not be used anymore. You were obviously angry when you wrote that last bit, but perhaps you could use non-R-words next time to express yourself? Maybe take a prominent atheist's name in vain instead?

I meant to answer this before but forgot.

Yes I take your point.

I forget that not everyone sees blasphemy as a victimless crime as I do.

betty14
07-20-2009, 08:18 PM
Hi Betty,

I find your posts fascinating and informative. Would you mind elaborating on your comment about post-menopause worsening of scoliosis? Is this common? If so, what is the reason.

Thanks!

Thank you, leahdragonfly; here's some info for you on that:

After the hormone changes around menopause, in addition to plain old age-related changes that can sometimes also cause problems, you've probably heard about increased rates of osteopenia and osteoporosis in women. And women with scoliosis usually already have some reduction in bone density even at young ages. The weakened vertebral bodies lose height, leaving less space for the surrounding tissues, and weakening of the spine can cause a curve to get somewhat worse (the extent to which this is due to more bone deformity vs. further winding down due to loss of muscle support, I'm not sure). A fracture in an osteoporotic scoliotic spine understandably could also make a curve worse. When I say "worse" I mean either curve progression or greater pain and disability.

Some people without a history of scoliosis could develop degenerative scoliosis later in life, but that type of scoliosis has several features different from AIS.

There is good evidence to show that osteoporotic women can improve strength, function, slow bone density loss, and reduce the risk of fracture by doing certain high load strengthening exercises.

Applying what is known about "normal" aging spines to scoliotic aging spines obviously isn't an apple to apple comparison, but no research called "aging women with scoliosis and ostepenia who do strength and curve corrective exercise compared with controls" exists, to my knowledge.

How old are you now?

Sincerely, B.

betty14
07-20-2009, 08:38 PM
I think Betty knows the rate of muscle loss/atrophy after stopping exercise. In horses it is about two weeks or even less in my estimation.


Losses can occur in 10 days, although studies show that various fiber types can show losses slightly faster or slower.




I had Dengue Fever at one point while living in Puerto Rico. I was so sick that I don't even fully remember some of that time. I would say I could not have exercised in a meaningful way for at least a month and likely more. Let's assume at the time I had been desperately exercising for 10 years to hold my curve to avoid surgery. I wonder how much ground I would have lost? How much of that would be a permanent loss?

You may be thinking too rigidly about what defines muscle loss. Yes, muscle fibers may grow smaller, so brute strength may be lost. However "muscle memory" - by which I mean the motor programming that allows the scoliotic person to adjust their body into a corrected alingment is not lost very fast at all. Once you learn a skill, you tend to keep it (this is well documented). The person who has learned to ride a bike can ride quite easily after a 10 year break from biking, and the person who has learned the skill of self adjusting posture does not just lose it.




Maybe I'm unusual but I think it is highly unrealistic to expect long term exercise to hold a curve if only because folks can't always exercise long term through no fault of there own. And when you layer on other sicknesses that aren't so severe and days when you hurt too much to want to exercise, it just seems unrealistic. But what do I know?

Not everyone can manage such a program, and people should be encouraged to make their own decisions about how to handle their scoliosis.




Let's assume at the time I had been desperately exercising for 10 years to hold my curve to avoid surgery.


The thing is, many people exercising to help their backs are not doing it avoid surgery. No surgeon would recommend surgery for me, for example.

Also, I doubt very much that any person would "desperately exercise" for 10 years. If I felt desperate, I likely could never find the motivation to even try an exercise approach. You need to enjoy or at least be sufficiently pleased with the results to continue.

B.

betty14
07-20-2009, 08:44 PM
No, I actually know her. And, I know she works full time. I just don't know if she works 40 hours a week. It could be more.

Hi Linda:

I wonder if you would be willing to ask her a two questions if it's not too much trouble, to get the facts straight?

1. how many minutes per day, or hours per week does she spend doing exercise to specifically self-treat her spine?

2. based on her history, how much does she feel is the minimum that she needs to exercise per day to maintain her status.

If you'd rather not, that's OK. In that case, perhaps you could give me contact info?

Thanks, B.

betty14
07-20-2009, 08:52 PM
please delete

concerned dad
07-21-2009, 07:25 AM
(I had to look that one up, do you carry a thesaurus with you or what?)


That was pretty funny. I've had to refer to a dictionary a few times on this forum as well. Too bad I've taken the SAT's decades ago because I bet my score would go up a couple of points after participating here.

The problem is, I could see perhaps using "equipoise" in a sentence, but "insouciance"? Nah

On an unrelated topic for Sharon: I drove right by the NPR StoryCorps trailer in Rochester Sunday morning and thought of you.

PNUTTRO
07-21-2009, 11:02 AM
Dingo.

I realize that this thread has morphed into something weird, but I wanted to let you know my opinion.

OK OK. . . breathe. . . keep reading. . . .

I think that what you are doing with your son will help him. Blacking out his room and encouraging exercise are both healthy habits to develop in a young man. I support your right to seek treatment for your son in any way that you feel is appropriate. Its your right as a father to do so. You don't have to defend what you think is the right thing to do.

I wish you and your family the best.

p

concerned dad
07-21-2009, 12:04 PM
No curve progression in Schroth patients 3 years after treatment
This preliminary study begun in 1989 included 181 scoliosis patients, average age 12.7 years, average Cobb angle curvature 27 deg, average risser sign 1.4, average follow-up 33 months. Results of the preliminary study were compared to natural history as known from literature. For the worst-case analysis additionally a questionnaire was sent to the non-repeaters treated at the same time (1989 and 1990) as the patient sample, using essentially the same inclusion criteria. Results showed no curve progression (increase in curvature of 5+ deg/yr). The lack of progression of the 181 patients from the preliminary study and the 116 questionnaire patients together exceeded natural history even if all drop-outs were considered failures. Weiss HR, Lohschmidt K, el-Obeidi N, Verres C. "Preliminary results and worst-case analysis of in patient scoliosis rehabilitation." Pediatric Rehabilitation 1997 Vol. 1(1): 35-40.

Schroth reduces abnormal curves by over 30% and increases lung capacity
Out-patient Schroth therapy of 50 patients at the Physical Therapy and Rehabilitation School, Hacettepe University, Ankara, Turkey, reduced average Cobb angle from 26.1 to 17.85 deg in one year. Vital capacity increased by 420 ml. Otman S, Kose N, Yakut Y. "The efficacy of Schroth's 3-dimensional exercise therapy in the treatment of adolescent idiopathic scoliosis in Turkey." Saudi Medical Journal (9/2005), vol. 26(9):1429-35.

Book dispels common misconception that exercises do not help correct scoliosis
Despite nearly 90 years of Schroth therapy in Germany, conventional Anglo-American medicine still commonly asserts that physical exercises have no effect on scoliotic curvature. In her book, Dr. Martha Hawes reviewed the pertinent clinical, peer-reviewed literature in English and demonstrated conclusively that there is no scientific basis for this belief. The articles sometimes referred to as sources for this claim do not in fact make and support it with evidence. In contrast, Hawes found a growing literature in English testifying that properly designed exercises can have a positive effect on scoliotic curves. She devotes pages 99-105 of her book to a discussion of the Schroth program. Martha Hawes, Scoliosis and the Human Spine, Tucson, West Press, 2002.

Reference: http://www.schrothmethod.com/studies.html



Mamamax, I dont intend to discourage you, I really dont. But consider this text from an old AETNA insurance policy statement.

Surface electrical muscle stimulation has been shown to be effective in reversing or arresting progression of spinal curvatures in adolescents with idiopathic scoliosis. Brown et al (1984) reported the findings of a multicenter study on the use of night-time lateral electrical surface stimulation (LESS) for the treatment of juvenile or adolescent idiopathic scoliotics (484 girls and 64 boys, mean ages of 12.8 and 13.9 years, respectively). Only individuals with rapidly progressing scoliosis and at least 1 year of growth remaining were selected for this trial. The mean treatment time was 12 months, and the longest follow-up was 51 months. During the initial 6 months of therapy, a pre-treatment curvature progression rate of 1 degree/month was reversed to a reduction rate of 0.5 degree/month. Overall, 395 (72 %) patients had either reduced or stabilized their scoliosis. Seventy-one (13 %) patients had experienced temporary progression with subsequent stabilization and treatment continuation, while 82 (15 %) patients dropped out because of progression of their conditions. The major problem with LESS was skin irritation. The authors concluded that LESS treatment is a viable alternative to bracing for patients with idiopathic scoliosis.

Dutro and Keene (1985) performed a literature review on surface electrical muscle stimulation in the treatment of progressive adolescent idiopathic scoliosis. Patient selection criteria for studies reviewed were as follows: (i) Cobb angle of 25 to 45 degrees as indicated by radiographic studies, (ii) documented history of progression, (iii) minimum of 50 % correction on forced lateral bending, and (iv) minimum of 1 year of bone growth remaining. The authors concluded that electro-muscular stimulation is equally effective as bracing in treating progressive adolescent idiopathic scoliosis -- progression was arrested in 60 to 84 % of treated curves. For juvenile scoliosis, if treatment begins early enough and progression is not too severe, a curve cannot only be arrested, but reversed. Surface electro-muscular stimulation can also be employed to halt progression while patients await surgery.

I am quoting this to not show that Schroth doesnt work. I am quoting it to remind all that scientific views change (for anyone who stumbles on to this post: electrical stimulation for scoliosis has since been shown to be worthless).
Why did AETNA evaluate the evidence and agree to pay? I dont know. We can be pretty sure though that the two studies cited by them have some flaws. Maybe, just maybe, there is something similar going on with Schroth, I dunno, I never really looked into it. Maybe I should, but the US orthopaedic medical establishment HAS looked into it and it is my understanding that it is largely dismissed (as they now dismiss electrical therapy).
But, Dingo started this thread to discuss torso rotation strength training. I wonder, if/how that differs from Schroth therapy? Is it basically the same thing (except Dingo's excerice is essentially free) or is it based on a different concept.

Dingo
07-21-2009, 11:55 PM
concerned dad


Is it basically the same thing (except Dingo's excerice is essentially free) or is it based on a different concept.

One reason I like Torso rotation is because the therapy is so simple that it's easy to test. Scroth may be very effective but it's complicated, time consuming and there will always be a lot of noncompliance. I'm not saying it's ineffective I'm just saying that it's very difficult to do research on.

My take away from the torso rotation studies is that generally speaking strength training probably works. However once you move beyond an easy therapy like torso rotation it's almost impossible to test. I'm not an expert on Scroth but if it builds muscle I would guess that it helps.

Here is some evidence that muscle mass and physical size helps protect kids from curve progression.

Relation between adolescent idiopathic scoliosis and morphologic somatotypes. (http://www.ncbi.nlm.nih.gov/pubmed/9383860)


Subjects with progressive adolescent idiopathic scoliosis are significantly less mesomorphic than control girls.

A) Large framed girls progress less than thin framed girls.
B) Adolescent boys progress far less than girls.
C) Juvenile boys and girls have roughly the same chance of progression (http://journals.lww.com/spinejournal/pages/articleviewer.aspx?year=2006&issue=08010&article=00010&type=abstract).

I assume that all of these kids have the same nervous system disorder. One obvious explanation for the difference in progression risk for A and B is that muscle mass is protective. Juvenile boys and girls are roughly the same size and not surprisingly they have the same progression risk.

Dingo
07-22-2009, 12:12 AM
PNUTTRO

Actually you are correct. I was going to use this thread to store torso rotation links as they popped up. Hopefully they'd help another desperate parent, maybe years from now. I guess it grew beyond that. :)


I wish you and your family the best.

I appreciate that.

BTW, you forgot the fish oil. :) On the off chance that inflammation plays a role in progression I'm trying to cover that base too. If it doesn't help his Scoliosis at least it might boost his IQ (http://www.dailymail.co.uk/health/article-403803/Fish-oil-study-launched-improve-GCSE-grades.html).

Since we are on the subject of family here is a video of Scott from about a week ago (http://img190.imageshack.us/i/scottjumpz.mp4/). He had just taught himself to do flips so this is one of his first. Unlike his dad this kid is a natural athelete.

Pooka1
07-22-2009, 06:54 AM
If Dingo wants to preserve this thread as a master thread for torso rotation then I suggest Linda consider removing everything else or at least the low/no value posts and the penetrating glimpses into the obvious like my exchange with Mamamax.

I would leave the PT posts from Betty14 as they are relevant to all PT.

Dingo
07-22-2009, 08:42 AM
Pooka1


If Dingo wants to preserve this thread as a master thread for torso rotation then I suggest Linda consider removing everything else or at least the low/no value posts and the penetrating glimpses into the obvious like my exchange with Mamamax.

No, I don't mind. And it's not my place to say what should be posted. I was a web developer for many years in a previous life. Someday I'll stick all of the torso rotation links in a website for posterity.

S4Sarah
07-24-2009, 02:10 AM
The torso rotation machine is great because it strengthens the back muscles the the muscles can hold the spineup better, (hmmmmm could the msucles be part of the problem?????) If there is evidence to that it would bring research a huge way to finding the exact causes of Scoliosis and help them develop new treatments.

Electrical treatments don't work, my GP and I were talking about different treatments and he told me about electrical stimulation tretaments (I never heard of them until then) and he thought they would work originally when he read about them because it seems like they would, but then he read an article about how Electrical Stimulation does not work.

Dingo-AHHHH that's sooooo cool! I'm a web developer in training :)

betty14
08-11-2009, 09:07 PM
Elise Browning Miller (Yoga for Scoliosis) has reduced her curves significantly with daily yoga exercise. I've seen the before and after myself. I can't remember the degrees, but we're not talking a small curve. Elise feels the improvement is permanent. Obviously, I don't agree. I don't know how many hours each day she exercises, but it's a lot.




Okay that's three.
Just curious... does she have some rational reason why she thinks the improvement is permanent or is it wishful thinking?




When I challenged that I thought her curve would reappear if she ever stopped exercising, she did not respond.



Regarding the above exchange:

Linda, since you do not know how many per day she exercises, how do you know it is "a lot"? A person who enjoys working out may find an hour per day little, whereas a sedentary person may find 10 minutes per day too hard to manage. Is there any way for you to find out?




It's how she makes her living. I would estimate that it's on the order of 40 hours a week.Sharon can obviously speak for herself, but I suspect her point is that it's unlikely that the most of us are willing to spend 40 hours a week for the rest of our lives, to retain any correction.



Welp, that beats Hawes. And here I was impressed with Hawes doing it for 4 hours a day for several years.

Some of us non-yoga instructors have families and non-exercise-related careers.

Newsflash for certain exercise professionals.






Hi Linda:

I wonder if you would be willing to ask her a two questions if it's not too much trouble, to get the facts straight?

1. how many minutes per day, or hours per week does she spend doing exercise to specifically self-treat her spine?

2. based on her history, how much does she feel is the minimum that she needs to exercise per day to maintain her status.

If you'd rather not, that's OK. In that case, perhaps you could give me contact info?

Thanks, B.



Well, I never heard back on this from Linda, so I contacted Elise Browning Miller, who authorized her assistant to reply to me.


Dear Bettina,

This is ***, Elise's assistant. Elise is currently away but she reviewed your email and asked me to respond. We saw the thread on the forum and would like to clarify - in her 20s when Elise discovered that she had scoliosis and she found Iyengar yoga she did quite a lot of yoga. As her body restructured she continued practicing and teaching throughout the years. Presently she does around 1 hour of yoga a day of her own personal practice. She does teach a lot the rest of the week but when teaching she is not working on her poses and back rather her students', so that would not be considered a personal practice. She also tries to incorporate swimming into her weekly busy schedule, so she might go swimming once a week.


It is hard to say regarding the minimums because it all depends on the severity and progression rate of scoliosis, plus students with major pain tend to practice more often to get rid of the pain and those without (maybe even though they need it more) they practice less. Daily practice is preferable and would lead to best results, but even practicing couple of times a week is better then doing nothing.

As I mentioned, usually Elise works a lot and more often with students in the beginning and as the body realigns it can be less, but there must be dedication, otherwise it won't work. Yoga gives a unique all around approach to your body and mind and only after practicing it for some time you can judge it's effectiveness (like any other therapy or exercise). It is a lifelong support for those with scoliosis and whatever exercise they do for their backs - it must become part of their routine.

Bettina.

mamamax
08-12-2009, 06:57 PM
Thank you Bettina - for writing her and posting her response. Good information!

trcylynn
08-13-2009, 05:39 PM
Thank you Bettina... more motivation to bust out that old Yoga for Scoliosis DVD and maybe try taking it seriously again...

Dingo
11-05-2009, 10:27 PM
turtlelover posts progress using a Cybex torso rotation machine.

Torso Rotation (http://www.scoliosis.org/forum/showthread.php?p=85449#post85449)


Her first X Ray read a COBB angle of 9 degrees. Mild, but noticeable to her, painful, and in need of therapy.


Her second X ray was the last week in June COBB angle measured 11 degrees.


We returned home to North Carolina after a year of sabbatical in the first week of July and I bought a Cybex torso rotation machine used, in Florida, for $500 and had it shipped U SHIP for $200 and she has worked out on it every day since.


Yesterday we got another X ray. COBB angle 6 degrees. I know it is within measurement error, I know the x rays were on another system (Michigan versus Detroit), but I can look at them and see they are better

mamamax
11-27-2009, 10:57 AM
Hi Dingo :-)

Your upthread balance board link is no longer working.

Is this the one you use? http://gofit.net/balance-board.php

leahdragonfly
11-27-2009, 11:39 AM
[QUOTE=Dingo;85450]turtlelover posts progress using a Cybex torso rotation machine.


Dingo, I doubt that someone with a 9 degree curve that is very painful has true structural scoliosis (and actually by definition they don't). It sounds much more likely that this represents a functional scoliosis due to pain from another source, or even the curve is an unrelated, incidental finding in someone with pain from another source. But I know you are desperate to show that torso rotation works for some reason, so you will take whatever you can find.

And BTW, why does it have to be a Cybex machine specifically? Do you sell these or something?

You could really benefit from taking some college courses in epidemiology and statistics, so you could comprehend why a study sample size of 20 subjects can never be generalized to the entire population.

Pooka1
11-27-2009, 11:59 AM
(To Dingo)
You could really benefit from taking some college courses in epidemiology and statistics, so you could comprehend why a study sample size of 20 subjects can never be generalized to the entire population.

I made this identical comment when he applied countrywide(!) statistic to a group of 41 children...

http://www.scoliosis.org/forum/showthread.php?t=9632

joyfull
11-27-2009, 02:29 PM
I just read this old thread and I need to add my experience to the mix. I am 57 and have never had surgery. Years ago I went to a gym and did a machine that I sat on and pulled two stabilized handles towards me. It felt great, strengthened my back symmetrically, and helped me "hold myself up." My scoliosis was progressing very, very slowly. It was about 55 degrees by then.

In 2007 I went to Clear Institute in Minnesota. I've been reluctant to post my experience other than in private messages, since I didn't want to discourage people who may be helped there, but I believe that the program, aside from costing an amazing amount of money for a very long time. actually hurt my back and sped up the progression.

Dr. Woggon believes that to correct scoliosis you need to restore the natural curves in the neck and the lower back. Therefore the treatment focuses on these areas with no attention to the muscles of the torso. I was given two foam rolls for under my neck and my lower back when I slept. When I expresses concern that the muscles of my middle back were "giving way" to the curve in that position with no support, I was told that I shouldn't worry about it.

As part of the treatment, weights of about 20 pounds were placed on my rib hump. When I left the program after two weeks of these applications twice a day for 20 minutes while on a stretching table, the hump was slightly diminished. But it soon began to go all the way over to the right side, the concave ribs became more concave and I could feel and see my torso rotating more.

This is all to say that over the course of my life living pain free with scoliosis, working and raising two sons, I believe that the single biggest factor for me was having strong torso muscle to maintain good posture. I would think that any program that includes this could be very useful.

If anyone would like more information about Clear Institute, please contact me privately.

All the best to all,

Joy

mamamax
11-27-2009, 03:55 PM
I just read this old thread and I need to add my experience to the mix. I am 57 and have never had surgery. Years ago I went to a gym and did a machine that I sat on and pulled two stabilized handles towards me. It felt great, strengthened my back symmetrically, and helped me "hold myself up." My scoliosis was progressing very, very slowly. It was about 55 degrees by then.

In 2007 I went to Clear Institute in Minnesota. I've been reluctant to post my experience other than in private messages, since I didn't want to discourage people who may be helped there, but I believe that the program, aside from costing an amazing amount of money for a very long time. actually hurt my back and sped up the progression.

Dr. Woggon believes that to correct scoliosis you need to restore the natural curves in the neck and the lower back. Therefore the treatment focuses on these areas with no attention to the muscles of the torso. I was given two foam rolls for under my neck and my lower back when I slept. When I expresses concern that the muscles of my middle back were "giving way" to the curve in that position with no support, I was told that I shouldn't worry about it.

As part of the treatment, weights of about 20 pounds were placed on my rib hump. When I left the program after two weeks of these applications twice a day for 20 minutes while on a stretching table, the hump was slightly diminished. But it soon began to go all the way over to the right side, the concave ribs became more concave and I could feel and see my torso rotating more.

This is all to say that over the course of my life living pain free with scoliosis, working and raising two sons, I believe that the single biggest factor for me was having strong torso muscle to maintain good posture. I would think that any program that includes this could be very useful.

If anyone would like more information about Clear Institute, please contact me privately.

All the best to all,

Joy

Hi Joy - Thank you for posting your experience. I understand your reluctance to share, but the more of us that do share our experiences - the better for all of us. I'm also an older adult who has elected to decline surgery - even though it has been recommended since my 20's. Is your scoliosis rotational? The reason I ask is that mine is and my specialists have always said I should stay away from any rotational exercise. Recently however, when questioned more specifically, I was told very very short rotation (vs something like wide sweeps from side to side) would not be harmful.

I do believe there is something to the torso rotational strength training - and for that matter Clear. I also believe that the successes we see in each, as well as many other therapies should be studied in depth to help determine who would do best with what. The reason such studies are not available is a simple lack of funding - grant money simply does not exist, nor is there a specific scoliosis entity under NIH that would allow for such funded studies. Please someone correct me if I am wrong about that.

I too lived most of my life pain free but found that by my late 50's that pain was becoming an ever increasing companion. That led me to Spinecor for adults seven months ago and life has been vastly improved ever since. Along with Spinecor I am using some Schroth exercises which seem to strengthen the torso. So, yes I agree that weakened torso muscles may be largely responsible for curvature increase as someone with scoliosis ages.

Dingo
11-28-2009, 12:02 AM
Leahdragonfly


But I know you are desperate to show that torso rotation works for some reason, so you will take whatever you can find.

And BTW, why does it have to be a Cybex machine specifically? Do you sell these or something?

You could really benefit from taking some college courses in epidemiology and statistics, so you could comprehend why a study sample size of 20 subjects can never be generalized to the entire population.

You are going to have to help me out on this one.

What's the harm in literally a few minutes of physical therapy per week? It's so simple, easy and cheap that I can't understand your extreme reaction on this topic. What does a gym membership cost, $20?

In any case read the research. Torso Rotation worked for every child with a mild/moderate curve in the 3 studies. The cutoff is something like 40/50 degrees. A variety of physical therapists say it works (does this write-up sound credible? (http://www.biomech.com/full_article/?ArticleID=771&month=2&year=2005)) and I doubt that this little girl is part of a ruse.
Video: Eight year old's curve goes from 14 to 8 degrees. (http://www.wcsh6.com/news/health/story.aspx?storyid=92954&catid=8)

Let's say it fails. A parent is out $100 and a few hours of time, big deal.

I'm not against VBS and if my son needs it I'll get it for him, but what does that procedure cost? $50,000 or more (way more?) and the results aren't anything close to guaranteed. In fact the longterm risks are completely unknowable at this point. I mean c'mon the risk/cost ratio is at least 1,000 times worse when compared to a few months of physical therapy.

When my son started doing strength training (including lying rotations) I could tell within a month that his back had improved. It works that quick. Here is my son doing lying rotations with a 1 pound weight (http://img97.imageshack.us/i/rotators3.mp4/). Normally he uses 5 and I spot him but I had him use a 1 pounder to film him. On the suggestion of a scientist involved in this line of study we've improved this exercise with weights that lock his pelvis flat. This isn't as good as a MedX machine but my son is too small for that and we can do this at home. After 6 months his curve went from 11 degrees to 10 degrees. To me it looked a lot better but at the very least it didn't progress.

leahdragonfly
11-28-2009, 10:45 AM
Dingo,

My reaction is not extreme, and this has absolutely nothing to do with VBS. I am not at all opposed to the idea of trying torso rotation if it shows some promise. What realy bothers me about your posts is the way you present it to new parents. You tell them it WILL work without fail and I've seen you tell them not to worry about needing a brace, they can just do this miraculous torso rotation instead. This is SO incredibly misleading, and you are doing a terrible disservice to these parents (and their unsuspecting kids). You make these grand statements about torso totation as if you were an authority on it, but in reality, you are a lay parent with no medical background. This is very deceptive, and that is why you think my reaction is extreme.

The thing that bothers me about the scant literature on torso rotation is the paucity of actual data. 20 kids studied. For 8 months. No control group to compare to. And most importantly, the effects were not long-lasting. The researchers abandoned this research topic. And the little girl in the video you so love to tout, she is also wearing a brace, so DO YA THINK the brace had something to do with reducing her curves??? You simply can not claim with any certainty that the torso rotation caused her curves to reduce.

So Dingo, I try to ignore your outrageous claims, but this last one is just so over the top that I had to make a rebuttal. You should be more responsible in posting suggestions to other parents. You'd hate to find yourself in trouble for your suggestions.

Dingo
11-28-2009, 02:14 PM
Leahdragonfly


You tell them it WILL work without fail and I've seen you tell them not to worry about needing a brace, they can just do this miraculous torso rotation instead. This is SO incredibly misleading, and you are doing a terrible disservice to these parents (and their unsuspecting kids).

Don't need a brace? Sometimes I think I'm one of the few people on here who is pro-bracing. I'm not anti-bracing, you are confusing me with Pooka1. If you read through Dr. Moreau's patent application (http://www.wipo.int/pctdb/en/wo.jsp?WO=2008119170&IA=CA2008000595&DISPLAY=DESC) he indicates (if I understand his work correctly) that bracing does work.

However you might be refering to what Vert Mooney said in 2007. I'm sure that I've quoted him many times in various threads.
Exercise for managing adolescent Scoliosis (http://www.fasciaresearch.com/WCLBP/Barcelona/Mooney_Exercise%20for%20Managing%20Adolescent%20Sc oliosis.pdf)


In most cases the curvature can be reduced. Brief exercises performed twice a week are adequate. Braces are not necessary.

I do believe that Torso Rotation Therapy is almost universally effective for small and medium curves. If you watch the video I linked to (http://www.wcsh6.com/news/health/story.aspx?storyid=92954&catid=8) Roger Schwab says "We've seen it work in almost every case that we've had." Perhaps he is lying or just incompetent but based on the studies and write-ups I've read I happen to believe him.

Dingo
11-28-2009, 03:02 PM
Leahdragonfly


I am not at all opposed to the idea of trying torso rotation if it shows some promise.

BTW what do you mean "if" it shows some promise? Studies produced by mainstream scientists and claims made by credible, physical therapists indicate that this easy, inexpensive therapy holds significant promise.

And where did you get this idea?


And most importantly, the effects were not long-lasting.

To the best of my knowledge (correct me if I'm wrong) no longterm study has ever been done on this therapy. I think what you are refering to is this.
Treatment of adolescent idiopathic scoliosis with quantified trunk rotational strength training: a pilot study. (http://www.ncbi.nlm.nih.gov/pubmed/18600146)


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 to determine this.

I guess you were right, the effect wasn't long lasting. Whoops! You missed something.

Patients received a 4-month supervised followed by a 4-month home trunk rotational strength training program.

I have the study on my hard drive. Study participants only did supervised, strength training on the MedX for the first 4 months. After that they were sent home to do torso twists with an exercise band. This is what they found.


Although the patients were instructed in the home-based strength exercise program previously described, we did not effectively monitor their compliance. Our impression through retrospective inquiries was that only about one-third of them were reasonably compliant. Thus, it seemed that the supervised strength training effect lasted at least 4 months.

What they found was that the positive effects of the MedX lasted about 4 months after therapy was stopped. Sounds pretty long lasting to me.

I guess that explains this sentence.


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 to determine this.

Pooka1
11-28-2009, 03:30 PM
you are confusing me with Pooka1.

You have a hell of a nerve even suggesting that. :mad::mad:

Dingo
11-28-2009, 05:11 PM
Leahdragonfly

1 last thing


The researchers abandoned this research topic.

Why do you make things up at random? You are substantially wrong.

A few months ago one of the scientists involved in this research told me that another study was starting in Texas.

mamamax
11-29-2009, 04:15 PM
Hi Dingo :-)

Your upthread balance board link is no longer working.

Is this the one you use? http://gofit.net/balance-board.php

Thanks for the confirmation on this Dingo. I've just ordered it. Balance, a vestibular thing, is interesting in relation to scoliosis curvatude (think that is a made up word). Anyway, like torso strengthening, when a vestibular imbalance improves, there have been reports of curvatude also improving (and vice versa). I figure why not give it a try - if nothing else as we age, balance can always stand a little improvement :-)

Dingo
11-29-2009, 06:01 PM
Mamamax

Balance problems certainly could be a cause of Scoliosis but it's just as likely that they are a side effect of Scoliosis.

Dr. Moreau mentions this in his recent patent.


[0066] OPN (also called secreted phosphoprotein-1 , minopontin, or Eta-1) is a phosphorylated glycoprotein containing an arginine-glycine-aspartate (RGD) sequence present in mineralized tissues such as extracellular matrices. This multifunctional cytokine is involved in many pathological conditions.9'10 The presence of OPN transcripts and proteins in postural control centers such as the cerebellum, skeletal muscle proprioceptive sensory organs, and inner ear structures that control of equilibrium(11) is of interest, since AIS patients also exhibit defects in postural control, proprioception and equilibrium.(12;13) High plasma OPN levels have been found in different adult cancers and inflammatory conditions30"33.

Maybe OPN builds up in these areas and damages the brain's ability to balance the body. I suppose there are a dozen good explanations and nobody knows for sure.

Regardless of any of that standing on a balance board watching TV is at least 100 times more healthful than lying on a couch. :)

mamamax
11-29-2009, 06:36 PM
I would agree Dingo and think your OPN hypothesis is certainly plausible. As always, what comes first - the chicken or the egg? Either way - chances of achieving (at least) stability may be achieved through strengthening core muscles. Also purchased a balance training disk to use at the office.

http://www.amazon.com/Fit-Balance-Training-Disc-Pump/dp/B001181P8G/ref=sr_1_1?ie=UTF8&s=sporting-goods&qid=1259538181&sr=8-1

The reviews on the product indicate it also helps develop core muscles while seated at work - I do have an 8-hour desk type of job so I look forward to how that may also help in strengthening core stability. Noted some reviewers stated it helped a lot with pain for those with degenerative disc disease and also seems to help those with pain following back surgery. I wonder if it would help students at their school desks - I do remember how painful it was to sit all day in school, as well as college. Will let you know how it works for me.

Certainly scoliosis can be seen as a "balance" problem that evolves into spinal deformity: http://www.scoliosisjournal.com/content/1/1/3

Dingo
11-29-2009, 10:33 PM
Mamamax

Ya know, you might have a point. The balance idea might mean something.

Maybe OPN damages the part of the brain responsible for balance and THEN the spine starts to curve in response.

FixScoliosis (http://www.fixscoliosis.com/forum/threads/138-Idiopathic-Scoliosis-and-the-Neurological-link) posted this a few weeks ago.
Vestibular asymmetry as the cause of idiopathic scoliosis: a possible answer from Xenopus. (http://www.ncbi.nlm.nih.gov/pubmed/19812323)


A permanently imbalanced activity in descending locomotor/posture control pathways might be the common origin for the observed structural and behavioral deficits in humans as in the different animal models of scoliosis.

Long story short scientists screwed up the balance system in frogs and their muscles developed assymmetrically and their bodies grew deformed.

Karen Ocker
11-30-2009, 09:47 AM
Before my revision (fused,non instrumented-spine curving) I had very strong core muscles because I practiced Pilates faithfully with a personal certified Pilates instructor for ~ 3 years. We did everything possible to do this.

Despite this my spine continued to curve and I continued to lose breathing capacity despite, Pilates and regular aerobic exercise-strenuous walking/hiking.

It did help symptoms- but my spine continued to curve relentlessly.

Remember:
Scoliosis is not new.
There were only conservative methods--for centuries- before surgery was even considered. Surgery was explored because those methods did not work.


A search of the Internet of the history of scoliosis treatment going back millennia would be enlightening. A sample:
Traction, suspending, stretching, corsets, casts and exercises.

hdugger
11-30-2009, 11:20 AM
I think historical evaluations like these are a little tricky. You end up conflating the methods and the time. If you look far back at the history of scoliosis surgery, I imagine you'd find a long string of non-successes before they hit on a reliable method.

Surgical AND non-surgical methods advance. That there wasn't a solution yesterday does not in any way indicate that they're won't be a solution tomorrow.

I read an intesting essay by Lewis Thomas about the state of medical knowledge in different areas. When medicine really "has it," the solution is simple, easy, and actually resolves the problem (e.g., anitbiotics). When medicine is floundering, the solution is complicated, risky, and offers some help but doesn't actually address the core problem. Scoliosis medical treatment is still in the latter category.

If we had the equivalent of an antibiotic for scoliosis, there wouldn't even be a discussions about alternative methods. But, until medicine actually gets a handle on the cause, course, and treatment, we're not going to know what the *true* solution is. Nor are we going to know to know whether that solution will come from medicine or alternative paths.

Dingo
11-30-2009, 12:18 PM
Karen Ocker

I think hdugger is correct.

Here is something interesting from McIntire's 2007 study (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2072936/) on strength asymmetry.


Multiple factors might be responsible for the measured trunk strength asymmetry in female adolescents with scoliosis. Past studies have reported differences in cross sectional area, fiber type, and activation level between normal and AIS paraspinal muscles [4-6,9,44-50]. All these factors may influence force generation capacity of the muscle [20,51-54]. Multiple muscle groups are involved in rotating the trunk. Among the most important muscle groups for trunk rotation are the oblique abdominal muscles [25,43,48]. It is possible that the measured strength asymmetry is a result of altered biomechanics of the oblique abdominal muscles due to the asymmetrical torso. Mooney et al. [14] suggested that the trunk strength weakness was due to the muscle inhibition of the paraspinal muscles based on their EMG data of the lumbar paraspinal muscles. Trunk paraspinal musculature has been estimated to contribute about 5% of the total torque involved in trunk rotation [53]. The asymmetrical differences in trunk strength found in the current study, ranging from 2 Nm to 5 Nm (absolute torque in Table 3), might be partially due to paraspinal muscle weakness given their suggested 5% contribution.

In theory the paraspinal muscles are the problem. If I understand this study correctly it suggests that because of their tiny contribution it might be really hard to work them. The MedX machine locks down the pelvis which focuses more of the workload on the paraspinal muscles. Without the lockdown the abs take over because they are designed to do most of the work anyway. Core training may be slightly beneficial because it builds muscle but obviously it's not enough or scientists would know by now. It may have taken this advance in technology to get to the heart of the problem.

BTW I had a scientist look at the video of my son doing his torso rotations. He said that we had to lock down his pelvis or we would lose the benefit. I had to change the exercise to solve that problem. This is the kind of thing that nobody would have thought of even 10 years ago.

Karen Ocker
11-30-2009, 12:55 PM
What I have a problem with is doing the same thing, that was tried in the past, and expecting different results. This is where desperate hope ignores science. In the Internet age this can be packaged in ways to make it look like a revolutionary new treatment.

I am also enraged by claims of practitioners, with economic incentives, to engender hope in the desperate scoliosis sufferer. It happened in my case in the 1950's. :mad:

Below are some links to what was tried in the past. Pretty aggressive.

http://www.uihealthcare.com/depts/medmuseum/wallexhibits/scoliosis/history/20explanations.html

http://www.uihealthcare.com/depts/medmuseum/wallexhibits/scoliosis/history/treat1920.html


http://www.uihealthcare.com/depts/medmuseum/wallexhibits/scoliosis/history/debate.html


What I want to see is permanent correction/halting of progression by alternatives. So far I have not seen it. So many persons on this forum wore braces faithfully for 6 or more years as teens-only to have those curves progress into surgical ranges in adulthood. The ones which did not progress(small ones) might have the newly discovered gene for the non-progressive type.

hdugger
11-30-2009, 02:18 PM
I'm in agreement about the quacks. It's both infuriating and heart-breaking.

Maybe I'm mistaken, but I believe there have been significant breakthroughs (although definately not cures) in exercise-based scoliosis treatments. Just a few years ago, when my son was diagnosed, all I read is that "no exercise treatment has ever reversed a curve." Now, what I read is "exercise has not been shown to have a lasting effect" So, somewhere in those intervening few years, exercise *has* been shown to reverse curves (although, again, not permanently). Even so, reversing signficant curves is an advance, and it's changed the question from "how do we reduce a curve" to "how do we hold the reduction." In my opinion, that's a huge step. It's nothing like a cure, but it is an advance.

Dingo
11-30-2009, 02:45 PM
Karen Ocker

Those are good links. This paragraph stood out for me.


Physicians believed that long periods of "muscle weakness" could cause scoliosis. Diseases like polio, and infections that affected the chest muscles were noted as causes for muscle weakness in the back. Weak muscles on one side of the spine, it was thought, caused the strong muscles on the other side to pull the spine out of alignment. Some physicians in the early twentieth century believed this theory and attempted to strengthen the muscles in a patient's back. While keeping the muscles strong was good for the spine, it did not improve curvature or prevent progression.

I think those doctors diagnosed the problem as uneven muscle strength because it made the most sense. Why else would the spine curve in a particular direction if it wasn't being pulled? That's not to say there aren't other explanations but that one is the most obvious. I think the problem they ran into was that they didn't have the equipment available to test their hypothesis or solve the problem even if they were right.

Today it is widely accepted that children with Scoliosis do indeed have strength asymetry. The muscle fibers on the right and left side of the spine are different. (Source (http://www.ncbi.nlm.nih.gov/pubmed/9765036)) Whether that's a cause or consequence of Scoliosis is not definitively known. In my opinion the Torso Rotation studies suggest that it's the cause. If you read the abstract from the frog study (http://www.ncbi.nlm.nih.gov/pubmed/19812323) it shows that muscle imbalances lead to deformed growth.

Dingo
11-30-2009, 02:53 PM
hdugger


So, somewhere in those intervening few years, exercise *has* been shown to reverse curves (although, again, not permanently).

No longterm study has ever been done on Torso Rotation Strength training. If the cause of Scoliosis is muscle imbalance this therapy should remain effective as long as exercise is continued. Obviously after growth is complete a child could stop exercising.

Dingo
11-30-2009, 03:09 PM
Karen Ocker

Here is another study on the subject of muscle asymetry and Scoliosis.

2006: Geometric and electromyographic assessments in the evaluation of curve progression in idiopathic scoliosis. (http://www.ncbi.nlm.nih.gov/pubmed/16449906)


The natural history of patients with idiopathic scoliosis was analyzed radiographically and electromyographically in a prospective longitudinal study.


The changes in radiographic geometric and EMG variables between the first presentation and consecutive 4-6-month follow-up periods were analyzed in 105 patients with idiopathic scoliosis.


CONCLUSIONS: In the natural history of idiopathic scoliosis, SGV and EMG ratio at the lower end vertebra are prominent risk factors of curve progression. The asymmetric muscle activity is associated with increased axial rotation, which in its turn is associated with increasing Cobb angle and diminishing kyphosis. The combination of these variables provides insight in the physiologic and 3-dimensional biomechanical evolution of the natural history of curve progression in idiopathic scoliosis.

Like the frog study they found that muscle imbalance leads to deformity. That doesn't mean there isn't something neurologically wrong because there is. But the final link in the chain appears to be some sort of muscle imbalance that pulls the spine out of alignment as it grows.

I understand being wary of kooks on the fringe who make ridiculous, unscientific claims. But this is a direction that mainstream researchers are looking.

Dingo
11-30-2009, 05:42 PM
Although there is a lot of evidence that muscle imbalance either causes or plays a part in Scoliosis there isn't definitive proof.

But you have to ask yourself, why wouldn't muscle imbalance cause Scoliosis? Not long ago Japanese women would bind their feet. This would create a force that altered growth and over time caused deformity. Tell me this picture doesn't remind you of Scoliosis (http://upload.wikimedia.org/wikipedia/commons/8/83/FootBindingRxSchema2.gif).Topiary is another example where an unnatural force is applied to a growing plant to create deformity. Check out these bushes. (http://rlv.zcache.com/topiary_arches_at_zarcero_costa_rica_poster-p228872996276756211tdcp_400.jpg) Some African tribes used rings to deform the necks of women. I guess some guys in Africa think this is hot. (http://bethneden.com/images/Neck-Rings-Cropped_large.jpg) :)
If you think about it there are plenty of examples where an unnatural force combined with growth leads to deformity.

It's actually no surprise that 100 years ago scientists suspected that muscle imbalance was the cause of Scoliosis. They might not have understood how it worked or how to test their hypothesis but it was an obvious possibility.

mamamax
11-30-2009, 10:06 PM
I'm in agreement about the quacks. It's both infuriating and heart-breaking.

Maybe I'm mistaken, but I believe there have been significant breakthroughs (although definately not cures) in exercise-based scoliosis treatments. Just a few years ago, when my son was diagnosed, all I read is that "no exercise treatment has ever reversed a curve." Now, what I read is "exercise has not been shown to have a lasting effect" So, somewhere in those intervening few years, exercise *has* been shown to reverse curves (although, again, not permanently). Even so, reversing signficant curves is an advance, and it's changed the question from "how do we reduce a curve" to "how do we hold the reduction." In my opinion, that's a huge step. It's nothing like a cure, but it is an advance.

Well said hdugger - I see you are an Oregonian :-) My favorite state - hope to retire there. There certainly have been advances in non-surgical methods of managing the condition. Surgical methods or non-surgical methods, there will always be a place for both based upon individual needs. I'm very pleased to see the advances that have been made in both since I was 20 something (40 years ago). The "right" exercise is key, and we are learning more about that every day.

mamamax
11-30-2009, 10:28 PM
Great thoughts Dingo & I'm with you on all that - Neuromuscular rehabilitation = better balance & maybe a lot more :-)

Dingo
11-30-2009, 10:39 PM
Did somebody say Oregon?

I'm pretty sure that Northwest Spine Management (http://www.blueskywebdevelopment.com/nwspine/index.php) in Portland offers Torso Rotation for Scoliosis.

mamamax
11-30-2009, 10:47 PM
I think they do Dingo. Should be taking a trip out that way in the next year or so to visit family ... will stop by.

hdugger
11-30-2009, 10:53 PM
That's interesting, Dingo. I'll let my son know about it.

We love it here, Mamamax. We're transplanted Californians (and, before that, transplanted New Yorkers), but Oregon is much more our (slow) pace.

Dingo
12-05-2009, 06:04 PM
Medicine Ball Torso Rotation (http://www.youtube.com/watch?v=MSOp_fGeBMM)

This exercise might be beneficial for kids with Scoliosis. It works the paraspinal muscles, it's good for coordination and it's easy for young kids to do.

I had my 6 year old try this and he could do it safely, without difficulty. We used a 2 pound medicine ball that looks like a basketball. We modified this exercise slightly by placing a small disc behind his back. We used the disc to hold the ball. This ensured that he turned the same distance each time and when he switched direction he did the same amount of work.

I felt his back as he was doing this exercise and it significantly engaged the paraspinal muscles.

I should add that if an exercise is painful your child should stop. Pain or discomfort is a built in warning system that something is wrong. If a parent wants an expert opinion they should see their Doctor or a Physical Therapist. I am neither a doctor nor a PT.

txmarinemom
12-05-2009, 10:02 PM
Although there is a lot of evidence that muscle imbalance either causes or plays a part in Scoliosis there isn't definitive proof.

But you have to ask yourself, why wouldn't muscle imbalance cause Scoliosis? Not long ago Japanese women would bind their feet. This would create a force that altered growth and over time caused deformity. Tell me this picture doesn't remind you of Scoliosis (http://upload.wikimedia.org/wikipedia/commons/8/83/FootBindingRxSchema2.gif).Topiary is another example where an unnatural force is applied to a growing plant to create deformity. Check out these bushes. (http://rlv.zcache.com/topiary_arches_at_zarcero_costa_rica_poster-p228872996276756211tdcp_400.jpg) Some African tribes used rings to deform the necks of women. I guess some guys in Africa think this is hot. (http://bethneden.com/images/Neck-Rings-Cropped_large.jpg) :)
If you think about it there are plenty of examples where an unnatural force combined with growth leads to deformity.

It's actually no surprise that 100 years ago scientists suspected that muscle imbalance was the cause of Scoliosis. They might not have understood how it worked or how to test their hypothesis but it was an obvious possibility.

I think the obvious question here (given your theory) is if unnatural force is so predictable, why doesn't the unnatural (to US) force of bracing succeed more (or maybe at all?)?

Dingo
12-06-2009, 10:55 AM
txmarinemom


I think the obvious question here (given your theory) is if unnatural force is so predictable, why doesn't the unnatural (to US) force of bracing succeed more (or maybe at all?)?

I didn't come up with the theory of asymmetrical muscle development. That's what researchers are investigating, and I read what they publish.

txmarinemom
12-06-2009, 11:54 AM
I didn't come up with the theory of asymmetrical muscle development. That's what researchers are investigating, and I read what they publish.

I was referring to your examples. Did the read you read link foot binding and topiary with "asymmetrical muscle development"?

Dingo
12-06-2009, 10:45 PM
txmarinemom

I think bracing does help. I assume the reason it fails so often is because kids for completely understandable reasons don't want to wear their brace.

In Dr. Moreau's Scoliosis patent (http://www.wipo.int/pctdb/en/wo.jsp?WO=2008119170&IA=CA2008000595&DISPLAY=DESC) he shows that bracing lowers Osteopontin levels. I assume that Osteopontin is a marker for inflammation. Pushing the spine back towards zero degrees reduces the inflammation.


[00165] A distribution of AIS patients across the predefined cut-off zones was also performed prior to being treated with bracing and after bracing. Eight patients were tested a certain number of months after bracing, namely for each of patients #1 to 8: 7, 7, 8, 22, 22, 22 and 26 months after bracing, respectively. Figure 16 shows that prior to being treated with bracing (Panel A), 63% of these patients were in the red and yellow zones. A significant shift towards the green zone (<700ng/mL) was observed, which is consistent with the trend observed in surgically treated patients, as presented in Figures 13 -15.

Surgically treated children also showed a dropoff in OPN.


[00163] Panel B of Figure 15 show that red zone patients who were treated surgically experienced a decline in OPN concentrations in the blood. 75% of the surgically treated patients fell into the green and yellow zones (800 ng/mL or less).

txmarinemom
12-06-2009, 10:59 PM
Did you really just cite a patent *application* as proof of something?

Dingo
12-06-2009, 11:24 PM
txmarinemom

You realize that Dr. Moreau is about to release an FDA approved blood test based on this and other work right?

Press Release (03/12/2008): Dr. Moreau Inaugurates The Viscogliosi Molecular Genetics Laboratory of Musculoskeletal Disorders (http://www.recherche-sainte-justine.qc.ca/en/medias/salledepresse/52;jsessionid=a3RAX-fGDns8)

txmarinemom
12-06-2009, 11:40 PM
txmarinemom

You realize that Dr. Moreau is about to release an FDA approved blood test based on this and other work right?

Press Release (03/12/2008): Dr. Moreau Inaugurates The Viscogliosi Molecular Genetics Laboratory of Musculoskeletal Disorders (http://www.recherche-sainte-justine.qc.ca/en/medias/salledepresse/52;jsessionid=a3RAX-fGDns8)

Did you really just cite a press release?

mamamax
12-07-2009, 05:37 AM
I think bracing does help. I assume the reason it fails so often is because kids for completely understandable reasons don't want to wear their brace.

In Dr. Moreau's Scoliosis patent (http://www.wipo.int/pctdb/en/wo.jsp?WO=2008119170&IA=CA2008000595&DISPLAY=DESC) he shows that bracing lowers Osteopontin levels. I assume that Osteopontin is a marker for inflammation. Pushing the spine back towards zero degrees reduces the inflammation.



Surgically treated children also showed a dropoff in OPN.

Intersting stuff Dingo! Think you will like this study I found out of the UK that mentions a bit of OPN (and Moreau's work):

http://www.scoliosisjournal.com/content/4/1/24

Pooka1
12-07-2009, 06:37 AM
Pam!

Patents and press releases are VERY SIGNIFICANT as we can see by the history of patent applications and press releases.

And don't bother with trying to actually get your arms a round this, something that arguably would take months and months. Just pick out what appeals to you aesthetically, if not randomly, in this field.

Sometimes you are so silly Pam!

mamamax
12-07-2009, 07:00 AM
Press Release (03/12/2008): Dr. Moreau Inaugurates The Viscogliosi Molecular Genetics Laboratory of Musculoskeletal Disorders (http://www.recherche-sainte-justine.qc.ca/en/medias/salledepresse/52;jsessionid=a3RAX-fGDns8)

Dingo -

Just read this release - wow ... this is going to be something to watch. Once again - Go Canada!

Dingo
12-07-2009, 09:00 AM
Mamamax

Thanks for the study link! As per usual the topic of asymmetry comes up.


The autonomic component of this double neuro-osseous theory for AIS pathogenesis in girls involves selectively increased sensitivity of the hypothalamus to circulating leptin (genetically-determined up-regulation possibly involving inhibitory or sensitizing intracellular molecules, such as SOC3, PTP-1B and SH2B1 respectively), with asymmetry as an adverse response (hormesis); this asymmetry is routed bilaterally via the sympathetic nervous system to the growing axial skeleton where it may initiate the scoliosis deformity (leptin-hypothalamic-sympathetic nervous system concept = LHS concept).

BTW this is from the press release


It should be remembered that in 2006 Dr. Alain Moreau made a major breakthrough in the field by developing the first diagnostic test for the early screening of scoliosis as well as for the extent to which the disease will develop. The clinical validation of the tests, which started in 2006, will finish in 2008. The tests are due to hit the market in 2009.

LindaRacine indicated that Dr. Moreau had made some sort of announcement recently so maybe the release date for the test is approaching. Here is the thread on that. (http://www.scoliosis.org/forum/showthread.php?t=9419)

txmarinemom
12-07-2009, 10:06 AM
Pam!

Patents and press releases are VERY SIGNIFICANT as we can see by the history of patent applications and press releases.

And don't bother with trying to actually get your arms a round this, something that arguably would take months and months. Just pick out what appeals to you aesthetically, if not randomly, in this field.

Sometimes you are so silly Pam!

How embarrassing I questioned the significance of this VERY SIGNIFICANT significance!

I'm really (no, really) trying to be sincere in my VERY SIGNIFICANT chagrin - only I can't stop giggling.

This is significantly funny stuff. :rolleyes:

Dingo
12-07-2009, 01:41 PM
This has got to be the worst moderated health group of all time. I think that's why it attracted half a dozen wingnuts. The same posters control their comments on other boards because they know the moderator will put them in their place.

Pooka1
12-07-2009, 04:11 PM
This has got to be the worst moderated health group of all time. I think that's why it attracted half a dozen wingnuts. The same posters control their comments on other boards because they know the moderator will put them in their place.

Your posting is reckless and disregards the other posters who are new and don't know you are a lay, untrained parent posting scientifically ignorant opinions as fact.

You don't know what you don't know. Others have tried to tell you this but you ignore it.

Pooka1
12-07-2009, 05:30 PM
Did anyone actually read this press release?

It is a MOLECULAR (not infectious deisease) lab looking at the genetics of scolisois.

Some relevant quotes (emphasis added):


In fact, his activities in the field of genomics are going to lead to a type of medicine that is adapted to a patient's genetic profile in order to deliver a targeted therapeutic response tailored to an individual's health problems."

and


On average, 30% of children whose parents suffer from scoliosis will themselves later develop the disease.


Anyone following along will know immediately that Dingo "knows" these things to be false.

Now either Moreau is a genius or hopelessly uniformed. Which is it? Can't have it both ways.

mamamax
12-07-2009, 05:53 PM
LindaRacine indicated that Dr. Moreau had made some sort of announcement recently so maybe the release date for the test is approaching. Here is the thread on that. (http://www.scoliosis.org/forum/showthread.php?t=9419)

I missed that Dingo - thanks for the link. You know I think we will see Dr. Moreau making some significant contributions to many things.

More and more my imagination carries me away - maybe one day, a vaccination to prevent AIS. It is not beyond the realm of reality, given the technology we have today. Fifty years from now I do hope we have a whole different ball game.

mamamax
12-07-2009, 05:56 PM
Your posting is reckless and disregards the other posters who are new and don't know you are a lay, untrained parent posting scientifically ignorant opinions as fact.

You don't know what you don't know. Others have tried to tell you this but you ignore it.

Is the pot calling the kettle black?

Pooka1
12-07-2009, 06:03 PM
Is the pot calling the kettle black?

Is the third party able to follow along?

How many non-bunnies in molecular biology, neuroendocrine, etc. do you suppose post to this group?

And by the way, that article you posted QUESTIONED if not DOUBTED Moreau's hypothesis. Did you realize that? That's going to make Dingo again question the moderation.

mamamax
12-07-2009, 06:12 PM
Is the third party able to follow along?

How many non-bunnies in molecular biology, neuroendocrine, etc. do you suppose post to this group?

And by the way, that article you posted QUESTIONED if not DOUBTED Moreau's hypothesis. Did you realize that? That's going to make Dingo again question the moderation.

ok - I'm about to nominate this thread of the week (haven't decided which category). Yes the third party is able to follow along - is this the party to whom I'm speaking?

Listen we shouldn't be so juvenile (no offense to any juveniles out there).

Lori Dolan would like to come to town, maybe we should be better behaved.

Dingo understands me bty - his postings spark my imagination.

Pooka1
12-07-2009, 06:16 PM
Lori Dolan would like to come to town, maybe we should be better behaved.


If you think there has been some dope-slapping to date, just wait if/when we get a non-bunny like Dolan.

The level of lay, untrained speculation here has reached operatic levels. We need an expert to edify folks.

mamamax
12-07-2009, 06:24 PM
And THAT (the attitude) right there Sharon, is what will keep some very interesting people from coming to this forum - people who could contribute a LOT to our knowledge base. We could use her here Sharon. I've corresponded with her - and I'm as lay as lay can get - but she would never make me feel that way.

Pooka1
12-07-2009, 06:38 PM
It is not moral failure to be a bunny. You shouldn't feel bad about not becoming a researcher in this field.

Why do you think it is an insult to have the obvious pointed out... that you, me, and virtually everyone here is a lay, untrained bunny?

mamamax
12-07-2009, 06:48 PM
As always (in life) it is not what is said - so much as it is - how it is said ;)

Really, the worst I can accuse you of is being high spirited - and that's actually admirable. Sometimes however, I do wish that when you pointed out the "truth" as you see it - that it could be done a little .... softer?

Just my viewpoint - from the perspective of someone with scoliosis, who would like a "safe" place to exchange thoughts and ideas .. in a world that is oftentimes already more real that I care to acknowledge. If that makes any sense?

Pooka1
12-07-2009, 06:55 PM
yes.


.


.

mamamax
12-07-2009, 06:59 PM
I thought you would understand - Glad I was right about that :-)

Dingo
12-07-2009, 07:06 PM
Pooka1

Your opinions are not a problem. The problem is that you are an angry woman who tries in every post to create conflict.

You know better than to try that dog and pony show on other boards because you'll get clipped. I can't think of a single angry post by you on the Yahoo Juvenile/Infantile group. Same story on scoliosis.org.

This proves that the problem isn't you, because you aren't a nuisance on other boards. The problem is LindaRacine. Her job is to keep you and people like you in line but she never does her job.

Pooka1
12-07-2009, 07:14 PM
Pooka1

Your opinions are not a problem. The problem is that you are an angry woman who tries in every post to create conflict.

Your problem is that I'm too factual.


You know better than to try that dog and pony show on other boards because you'll get clipped. I can't think of a single angry post by you on the Yahoo Juvenile/Infantile group.

I don't post to Yahoo Juvenile/Infantile group because I don't have a child with JIS or IIS nor have I ever requested a login for that group.


Same story on scoliosis.org.

I voluntarily stopped posting on SSO for a reason.


This proves that the problem isn't you, because you aren't a nuisance on other boards.

You WILL be surprised to learn this is the most moderated board I post on with the exception of SSO which is more moderated that anything else I have ever thought about posting on (or will think about posting on in the future).

People need to control what they read. It is flat out lazy to ask moderators to do that for lazy readers.

mamamax
12-07-2009, 07:15 PM
I think our moderation here is open - for a reason. Just a theory of mine, that maybe Joe wanted us to have a place where we could communicate just about anything - including letting off steam once in awhile. And that certainly makes for some pretty hair raising times.

Maybe from here - we can change the way we deal with each other, for the better.

Call me odd - but I believe in us - and believe we can.

SSO bty - is a fine example of civilized discussion - and while I do think it's good to be able to blow off steam once in awhile - maybe a separate topic thread could be created just for that :-)

Pooka1
12-07-2009, 07:20 PM
This is not open moderation. I post almost completely in places with no moderation and you can bet your bottom dollar if there are complaints they are quickly followed by charges of folks being too lazy to control what they read.

It is always better to control what you read rather than being totalitarian and trying to control what others write. ALWAYS.

And I don't want a moderator controlling what I read.

mamamax
12-07-2009, 07:24 PM
Yes, and it's also a good rule of thumb to treat others with respect - even if we don't respect them - making discussions more productive. Certainly you know that from the professional circles you move in, I would think .. in which case, I apologize for preaching to the choir ;-)

Dingo
12-08-2009, 08:47 AM
Pooka1


I voluntarily stopped posting on SSO for a reason.

I wonder what their side of the story would be on that. Odds are good that the moderators on scoliosis.org called you on the endless stream of hateful crap that you spew. That's something that needs to happen here.

Practically everything you post, right down to your signature is designed to stir conflict.

Pooka1
12-08-2009, 08:54 AM
Pooka1



I wonder what their side of the story would be on that. Odds are good that the moderators on scoliosis.org called you on the endless stream of crap that you spew. That's something that needs to happen here.

Practically everything you post, right down to your signature is designed to stir conflict.

I posted recently on Mark's thread. That is proof you are wrong. You are wrong about a lot of things and stubborn about admitting it.

You have no sense of things.

You are wrong that I did not voluntarily stop posting on SSO. I invite Titch to relay my exchange with her saying exactly that.

You are wrong about my status as a researcher.

You are wrong about the literature.

You are wrong about your "understanding" of how researchers operate.

You are wrong about more things than you are right about.

You are wrong if you think this place is not moderated.

You are reckless.

Pooka1
12-08-2009, 08:58 AM
http://www.scoliosis-support.org/forumdisplay.php?f=14

I just posted this thread on SSO showing you are wrong (again).

You have no sense for things.

Pooka1
12-08-2009, 09:09 AM
Pooka1
Practically everything you post, right down to your signature is designed to stir conflict.

That's a common complaint about material that is too factual for certain folks.

Complaints about form are almost always about substance that dare not speak their name. Adults complaining about factual material is unseemly to say the least so we instead get complaints about "tone."

oojackapivvy
12-08-2009, 11:08 AM
Ok, I'm just fed up now.

YES, you did indeed voluntarily cease to post, but what you have failed to say is that you did so when faced with the option of either ceasing to be unpleasant, or being placed on permanent moderation so that we could remove the invective from your posts and reduce them to the informational content.

THAT is what we try to moderate at SSo - not the information, but the tone.

This is my second post across here, and the second one related to arguments from here being dragged across onto SSo. Not acceptable. I don't care what you all get up to over here, SSo is a different place and I will not have it dragged down into a mire of argument just to satisfy a very few members. Post whatever information you like, but be respectful in how you do it - that's all we ask.

Pooka1
12-08-2009, 01:03 PM
This is why I avoid moderated fora.

Form over substance.

Pooka1
12-08-2009, 02:04 PM
Okay Titch has now put me on "permanent" moderation on SSO for posting that last post.

I challenge her to point out any instance whatsoever when I was not trying to contribute facts (as far as I know them this not being my field) or pointing out that others were posting counterfactual information.

While not directly analogous because I'm nowhere near being an expert in scoliosis, I have seen experts on other groups dealing with other topics who contributed immensely with advice on their own time for no reason other than to help others sometimes get kicked off moderated groups for form over substance issues. That is Exhibit A in cutting off your nose to spite your face. If they do that enough it's just going to be the blind leading the blind leading the naked.

Dingo
12-08-2009, 07:33 PM
Pooka1

On this board you are a very hateful person. If your personal life is similar you are not in a healthy place. I'm not sure if you have a physical or emotional problem or you have a hard life and this is how you blow off steam. But from one human being to another something is wrong and you need to find out what that is. Everybody gets angry but if you feel like this all of the time something is not healthy in your life.

In my mind I'm putting every fight we've ever had in the past. To me that's history, gone forever. But this is what you need to hear. I'm not trying to be Dr. Phil, I'm just saying that something isn't right.

txmarinemom
12-08-2009, 08:16 PM
Pooka1

On this board you are a very hateful person. If your personal life is similar you are not in a healthy place. I'm not sure if you have a physical or emotional problem or you have a hard life and this is how you blow off steam. But from one human being to another something is wrong and you need to find out what that is. Everybody gets angry but if you feel like this all of the time something is not healthy in your life.

In my mind I'm putting every fight we've ever had in the past. To me that's history, gone forever. But this is what you need to hear. I'm not trying to be Dr. Phil, I'm just saying that something isn't right.

If you'll quit changing your post, maybe my response will make sense.

Dingo, since you've decided this is an intervention, let's take a look at how ridiculous it is for you to pretend you're an expert. You have people here (mostly newbies - within the last year, anyway) who think you actually know what you're talking about. A bonafide genetic researcher has tried to point out some flaws in your logic, but you act like her input is worthless. You may have reaped some benefit from listening to her - and maybe it isn't too late.

I truly *hope* some of the things you continually cite are just around the corner. As you've continued posting, however, I have to wonder: Have you so completely lost perspective that you can't see how you've begun to see a pattern in all chaos? You have gotten to the point you don't even NEED evidence for anything ... as long as you *want* it to be true.

As a parent, *that* I can understand: I still find your lay research (more so the presentation of it as fact) a disservice here.

It's unfortunate that people who don't deal in pixie dust will likely always been seen by you as "angry". They rain on your parade holding you to standards of research and proof. The fact of the matter, Dingo - and one that's been drug out in front of you (and a few others) repeatedly, is EVIDENCE talks. You don't have that. You (and a few others, again) continually reference the same studies in whatever context fits your daily requirement.

There have been a few things you've posted that actually made me think "Hmmm. That ~could~ makes sense." ... but then you ruin it with the next post.

Do you realize how incredibly much you've bitten off (infectious disease to other pathology to genetics to asymmetrical musculature to topiary), and WHY you have the potential to be so damaging to those who really just want to believe you have an answer (THE answers) when the experts don't?

Dingo
12-08-2009, 10:22 PM
txmarinemom

PSA: Reading is FUNdamental (http://www.youtube.com/watch?v=RqGNbQkRaxM)

txmarinemom
12-08-2009, 10:56 PM
txmarinemom

PSA: Reading is FUNdamental (http://www.youtube.com/watch?v=RqGNbQkRaxM)

Yeah. That's about what I'd expect you to have after your meltdown ...

mamamax
12-08-2009, 11:12 PM
Is it possible for the hostile conversation to be moved to some other venue - maybe a chat room, so that a parent here (Dingo) may continue sharing some worthwhile information with other parents and patients?

LindaRacine
12-08-2009, 11:16 PM
Pooka1

Your opinions are not a problem. The problem is that you are an angry woman who tries in every post to create conflict.

You know better than to try that dog and pony show on other boards because you'll get clipped. I can't think of a single angry post by you on the Yahoo Juvenile/Infantile group. Same story on scoliosis.org.

This proves that the problem isn't you, because you aren't a nuisance on other boards. The problem is LindaRacine. Her job is to keep you and people like you in line but she never does her job.
I'm not the only moderator, so you might at least include the others when you're trashing me.

mamamax
12-08-2009, 11:19 PM
Could we please have some moderation and leadership like is found at SSO?

mamamax
12-08-2009, 11:24 PM
Ok, I'm just fed up now.

YES, you did indeed voluntarily cease to post, but what you have failed to say is that you did so when faced with the option of either ceasing to be unpleasant, or being placed on permanent moderation so that we could remove the invective from your posts and reduce them to the informational content.

THAT is what we try to moderate at SSo - not the information, but the tone.

This is my second post across here, and the second one related to arguments from here being dragged across onto SSo. Not acceptable. I don't care what you all get up to over here, SSo is a different place and I will not have it dragged down into a mire of argument just to satisfy a very few members. Post whatever information you like, but be respectful in how you do it - that's all we ask.

Moderation and leadership like this - Please!

LindaRacine
12-08-2009, 11:34 PM
What would be the point of being just like another forum? If you want politically correct everything, SSO may be the place for you. I didn't moderate Sharon or Pam when I didn't agree with them, so I'm not going to do it now.

mamamax
12-08-2009, 11:36 PM
Civilized behavior - belongs EVERYWHERE

txmarinemom
12-08-2009, 11:39 PM
Moderation and leadership like this - Please!

Is your IP address stuck in a loop? For that matter is Dingo's?

To you SSO mods, I don't post on your site ... maybe I have in the past - I'm not sure. Apparently, a few here are appreciative of your venue.

I mean no disrespect to you when I say to them, "If you like the way it's run, safe trip!".

Stop whining already. Please.

mamamax
12-09-2009, 06:33 AM
If everyone here is not appreciative of quality leadership in action - well, they should be.

Without it (like we are experiencing here) this board appears (by contrast) to be run by a bunch of very "Ugly Americans" in some chat room... which is not fair representation of the majority of patients and parents here.

Invitation to leave declined - and note it (the invitation) works both ways (regarding the non surgical forums).

Pooka1
12-09-2009, 06:39 AM
SSo is a good forum but is not a place where I would go for unadulterated facts if they come at the expense of feelings.

But as we have seen repeated here, there is a certain percentage of folks who like that and want that. I think they should migrate to SSo for their own sake. I view NSF as too factual for some.

This place is moderated but by at least one person who is not only interested in the facts but knows them. It is no coincidence that she seems the substance through the form... where the rubber hits the road.

I have seen enough of moderated fora, SSo and others, such that the liabilities out weigh any benefit of moderation... counterfactual material that goes unedified, tossing experts how you would have to pay big bucks to say the same thing in person for nonsense reasons, etc. etc. If the point is to help people, these types of actions aren't working in my book.

Again, tone complaints are almost always substance complaints that dare not speak there name. There is no tone in the world that has ever been devised to tell someone who is frightened out of their wits over surgery that no conservative treatment can produce the same near-permanent spine stability. No tone exists in which to tell a parent that there is no good evidence for bracing efficacy when that is their entire hope. (Bracing might work but someone is going to have to show it.)

NSF comes closest to the only legitimate purpose for having a moderator... pointing out and zapping counterfactual material. This is a key function on a health forum. Unmoderated fora exist for a very real and useful reason.

Pooka1
12-09-2009, 06:44 AM
Without it (like we are experiencing here) this board appears (by contrast) to be run by a bunch of very "Ugly Americans" in some chat room... which is not fair representation of the majority of patients and parents here.

Well if people are making incorrect conclusions then that says something about them, yes?

When I voluntarily stopped posting on SSo, I missed some folks but it was a relief. Perhaps you could have heard my huge sigh from wherever you are.

Moderated fora will always be hamstrung to one extent or another. It's annoying when its easy to see how it could be better, how many less misleading posts would get by, etc. etc.

Pooka1
12-09-2009, 06:49 AM
If everyone here is not appreciative of quality leadership in action - well, they should be.

Without it (like we are experiencing here)

You obviously have never been on a moderated group where experts (i.e., LEADERSHIP) were tossed for bullcrap reasons. That's being unappreciative of leadership in the extreme as a DIRECT reason of moderation. You can have that. If that goes on, those groups are going to be a field of bunnies looking quizzically at one another getting nowhere fast.

NSF, though moderated, is moderated by someone who is knowledgeable. That is the key it seems. It is the only moderated forum I have ever found that is even tolerable. As I said, I don't frequent moderated fora so I am certainly no expert on them but that's what it seems.

mamamax
12-09-2009, 07:10 AM
Clearly there is need for both surgical and non surgical methods - hence forums for each - and each should be allowed to operate unfettered by - the things we are discussing.

mariaf
12-09-2009, 08:13 AM
Moderation and leadership like this - Please!

I agree with those who have said (and I mean this sincerely, not with any disrespect) that if some members prefer SSo and how it is moderated, they should frequent that forum instead. This one is run differently and works for many of us. As Linda said, she has moderated this way all along and is not, to her credit, going to buckle to pressure to change now.

There have been times (when one or two members were trashing VBS a while back, and misstating the facts about it which they knew little or nothing) when it would have been nice for someone (i.e., moderator) to ask them to stop posting inaccuracies that could have been harmful to a new member looking for correct and current information.

But, once I understood that is not how it works, I (along with a few others with some personal knowledge) tried to provide the accurate and current information which, in some cases, I got right from the doctor(s) who perform the procedure.

Point being - I'm a big girl and can speak for myself. I think that mentality is necessary on these forums - one can't and shouldn't wait for the moderators to jump in and try to silence another member - just because they don't agree with them.

leahdragonfly
12-09-2009, 08:43 AM
Outstanding post, Maria, and I couldn't agree with you more.

All adults need to be responsible for what they read. Period. Remember folks, you can block all posts from an individual if you don't wish to read their posts. Mamamax, maybe you should try it instead of whining endlessly about how much you don't like Sharon. And please spare Linda all the dissing--she doesn't deserve a minute of it.

Just my two cents.

jrnyc
12-09-2009, 09:13 AM
Hi Gayle
i second that! and i dont think it is surgical vs. non surgical methods being discussed that is the problem..it is falsehoods, half truths, & lies that create the problems....

jess

tonibunny
12-09-2009, 09:16 AM
I really dislike comparisons between our forums. Comparing our methods of moderation might encourage people to think the forums are competing and that is NOT the case, we're all here to support people with scoliosis and I think we ought to work together to do so. I don't think one forum is better than the other, and I'm always happy to point people over here and to other sites when I can see they will get more useful help. SSO is based in the UK and as such most of our membership is from Europe, so we don't have the wealth of experience of scoliosis treatments in the US. We're also set up and run by a group of friends, we're a lot smaller and the admin funds everything herself.

We try to keep things civil so we ONLY moderate things when people start to insulting and upsetting others - we have a lot of kids and stressed-out parents of very young children on the site who get scared to post when they see others being personally attacked. It is entirely possible to challenge information and disagree without this happening and we don't remove any posts that have been written in a calm and civil manner. Other than this, we moderate to move posts to the appropriate forum and remove dodgy porn spam (which I suspect is what Linda and the other mods here do a lot of, but they do such a good job that most people won't notice!).

There's nothing wrong with feeling more comfortable over here, or over there, or anywhere else, or being a member of more than one forum. Although I'm a mod at SSO I'm a member of several other fora and I'll post if I'm interested in something or if I think I can say something useful. Also, there are a lot of people on this site that I like and respect, too :D

mariaf
12-09-2009, 09:34 AM
Well said, tonibunny.

Each forum is set up a little differently and they are not all run exactly the same. I also belong to several forums and co-moderate the VBS site. As you said, we are NOT in competition with each other!! IMHO, it is juvenile for anyone to say "they do it better over there", etc.

And you are correct that moderators like Linda are dealing with spam and other issues all the time. There is a LOT of work involved for those of us that VOLUNTEER to moderate these sites in the hopes of helping patients and parents. Leave Linda alone - I doubt anyone is fighting her for her job :)

Back to the different forums - as you know, just the other day, here on NSF, we referred a mom over to the infantile/casting site. Sometimes on the VBS site, we mention Spinekids or NSF, if we think the person could benefit from those sites. Again, we are not in competition with each other and I can't even put my head around the mindset of anyone who would think that we were.

Everyone's situation is a bit different and folks should frequent the sites they are comfortable with and also those that fit their specific needs and stop whining about the ones they don't like - it helps nobody.

Dingo
12-09-2009, 09:41 AM
This debate has nothing to do with science vs. nonscience.

When I posted studies that showed that asymmetry played a roll in Scoliosis or that Torso rotation was helpful I don't remember dissenters posting opposing studies.

Go through this thread. Most of the opposing responses are nothing but anger, emotion and name calling.

LindaRacine


I'm not the only moderator, so you might at least include the others when you're trashing me.

Fair enough, neither you nor any of your staff members do their job. The minimum requirement for a healthy community is basic politeness. Without that this forum becomes a competition to see who can shout the loudest.

hdugger
12-09-2009, 12:56 PM
There's alot of talk on this thread about open moderation and freedom. Freedom isn't some objective thing - it all depends on where you sit.

A slight digression: I used to live in 1000 sq ft apartment which was laid out so that my mother had a room, set off from the rest of the apartment with a private balcony. All the rest of us (three people, two cats, and a large dog) were in a smaller room, without a balcony, which opened up directly off the kitchen. My mother always remembers that as "our amazingly spacious and well-separated 1000 sq ft apartment," no matter how many times we remind her that it wasn't all that spacious or well-separated for all of us. Not at all to diss my mom, who is wonderful. Just to say that what a thing is is a matter of perspective.

Likewise, if you're discussing surgery on this forum, it feels very free. If you're disinterested in topics other then surgery but want the freedom to comment on them, it's also very free. If, on the other hand, you're interested in *following and exchanging ideas* on a topic other than surgery, it is virutally impossible to maintain a thought. No matter what topic you start, there's are constant distractions, caveats, personal disputes, more caveats, more personal disputes. Dear god, I think there was even an intervention! It's enough to make your head spin!

To get a sense of the view from over here, imagine that *every* time someone posted about an upcoming surgery on this forum, the "horrific-and-true-stories-about-spinal-surgery" bus rolled through. "Did you know that the pedical screws can rupture the spinal column?" "Are you sure you're only going to have one surgery? Take a look at that revision forum - you may be setting yourself up for surgery after surgery after surgery without any relief from pain." "Are you really comfortable exposing your child to that much risk?" All true stuff, mind you, just in such a volume that there are five or six "horrific-but-true" tales for every one you're able to post. Yes, you have the freedom to ignore them. Yes, you have the freedom to argue your point. But, having the freedom to fight your way through a discussion just doesn't feel all that free.

Pooka1
12-09-2009, 01:54 PM
A sense of proportion always.

Treatment modality "A" has a very high success rate and extremely good safety based on years of evidence.

Treatment "B" doesn't have a lick of hard evidence for permanently reducing or halting curves in decades and decades in some cases and yet people continue to be routinely suckered out of their money as we type.

Yes you can bring up surgical nightmare stories but unless they are immediately chased by the risk factors, incidence rates, etc., it is misleading.

What is also misleading is people getting on here claiming PT, chiro, bracing, etc. halts or reduces curves absent any real evidence.

You continue to shoot the messenger on this point. The messenger is not personally responsible for the vacuum of evidence for conservative treatments, yes?

Now pain is one thing that is actually better treated conservatively rather than surgically as far as I know for the general population, not sure about scoliosis patients.

So a sense of proportion and intellectual honesty and being clear what you are claiming is effective for which conditions is always in order.

hdugger
12-09-2009, 02:57 PM
You continue to shoot the messenger on this point. The messenger is not personally responsible for the vacuum of evidence for conservative treatments, yes?

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 permently disfigured. Again, pardon but the language, but I do need to emphasize how strongly I feel about it.

Given this, I would appreciate the opportunity to *explore* the other available options without having to constantly read about who likes who. It's not primarily messengers or messages that I'm trying to clear my way through - it's the onslaught of messages with a whole lot of form and very little substance.

I am equally interested in the *substance* from both sides. But, again, the onslaught of postings "against" has had a pretty small amount of substance bundled in a big, emotional bundle of form.

There is simply no reason - I'm looking at you here Pooka - to state your concerns after every single post that Dingo makes. It would be more then adequate to calmly state your concerns once on every new page of the discussion - "I don't think Dingo has the scientific training to interpret these studies. I don't think there's been adequate followup. I would be very cautious about interpreting studies with no control group." If I'm missing some part of the message, you could toss that in. If you simply cannot restrain yourself, you could throw in a little "And I think Dingo is a big, fat poo-poo head" every couple of pages. All of that is fine. 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.

Dingo
12-09-2009, 04:08 PM
There is plenty of evidence both for and against Scroth, Spinecor, etc. etc.

I think the main problem that people run into when they argue against strength asymmetry is that there isn't a lot (or maybe any) counter evidence. That leaves dissenters with two uncompelling arguments that they fall back on over and over again.

A) The growing volume of research on strength asymmetry consists of nothing but bad studies.
B) I'm a bad father, misguided or scientifically ignorant.

If anyone has a link to counter evidence please post it. I am eager to read it. In the meantime research is piling up that strength asymmetry may play a decisive role in Scoliosis.

2007: Trunk rotational strength asymmetry in adolescents with idiopathic scoliosis: an observational study (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2072936/)


Accumulated evidence has shown asymmetry in muscle structure, mass, innervation, and activity level in adolescents with idiopathic scoliosis [1-9]. Recently it has been found that an increased EMG ratio between the convex and concave sides of right thoracic curves at the lower end vertebra is linked to curve progression [10-12]. The asymmetric muscle activity is suggested to be associated with increased axial rotation of the spine, which in turn is associated with Cobb angle progression [12]. Based on these findings, it seems logical that trunk strength asymmetry would be present in patients with idiopathic scoliosis. Two recent studies have examined the trunk rotational strength asymmetry in adolescents with idiopathic scoliosis [13,14]They reported that patients with idiopathic scoliosis were weak when rotating toward their curve's concave side and suggested a relation between the strength asymmetry and progression of the spinal curvature. However, no statistical analyses of the data and no comparison to healthy subjects were provided.

If you'd like additional info please go to the link and check out the references.

Dingo
12-09-2009, 04:29 PM
October 2009: Vestibular asymmetry as the cause of idiopathic scoliosis: a possible answer from Xenopus. (http://www.ncbi.nlm.nih.gov/pubmed/19812323)

Long story short scientists destroyed the part of the nervous system responsible for balance, in response muscles developed asymmetrically and Scoliosis occured.


Human idiopathic scoliosis is characterized by severe deformations of the spine and skeleton. The occurrence of vestibular-related deficits in these patients is well established but it is unclear whether a vestibular pathology is the common cause for the scoliotic syndrome and the gaze/posture deficits or if the latter behavioral deficits are a consequence of the scoliotic deformations. A possible vestibular origin was tested in the frog Xenopus laevis by unilateral removal of the labyrinthine endorgans at larval stages. After metamorphosis into young adult frogs, X-ray images and three-dimensional reconstructed micro-computer tomographic scans of the skeleton showed deformations similar to those of scoliotic patients. The skeletal distortions consisted of a curvature of the spine in the frontal and sagittal plane, a transverse rotation along the body axis and substantial deformations of all vertebrae. In terrestrial vertebrates, the initial postural syndrome after unilateral labyrinthectomy recovers over time and requires body weight-supporting limb proprioceptive information. In an aquatic environment, however, this information is absent. Hence, the lesion-induced asymmetric activity in descending spinal pathways and the resulting asymmetric muscular tonus persists. As a consequence the mostly cartilaginous skeleton of the frog tadpoles progressively deforms. 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. A permanently imbalanced activity in descending locomotor/posture control pathways might be the common origin for the observed structural and behavioral deficits in humans as in the different animal models of scoliosis.

Fast forward to Dr. Moreau's OPN patent.
METHOD OF DETERMINING RISK OF SCOLIOSIS (http://www.wipo.int/pctdb/en/wo.jsp?WO=2008119170&IA=CA2008000595&DISPLAY=DESC)


[0066] OPN (also called secreted phosphoprotein-1 , minopontin, or Eta-1) is a phosphorylated glycoprotein containing an arginine-glycine-aspartate (RGD) sequence present in mineralized tissues such as extracellular matrices. This multifunctional cytokine is involved in many pathological conditions.9'10 The presence of OPN transcripts and proteins in postural control centers such as the cerebellum, skeletal muscle proprioceptive sensory organs, and inner ear structures that control of equilibrium(11) is of interest, since AIS patients also exhibit defects in postural control, proprioception and equilibrium.(12;13) High plasma OPN levels have been found in different adult cancers and inflammatory conditions30"33.

High levels of OPN appear to cause scoliosis and it's found in the balance centers of the human nervous system. I agree with Dr. Moreau, that certainly is "of interest".

tonibunny
12-09-2009, 05:18 PM
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
12-09-2009, 05:21 PM
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
12-09-2009, 05:32 PM
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
12-09-2009, 05:50 PM
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
12-09-2009, 05:55 PM
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
12-09-2009, 06:02 PM
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
12-09-2009, 06:02 PM
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
12-09-2009, 06:36 PM
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! :o

mamamax
12-09-2009, 06:39 PM
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
12-09-2009, 07:06 PM
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
12-09-2009, 07:31 PM
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
12-09-2009, 07:41 PM
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
12-09-2009, 08:08 PM
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
12-09-2009, 08:26 PM
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
12-09-2009, 11:20 PM
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 (http://journals.lww.com/spinejournal/pages/articleviewer.aspx?year=2006&issue=08010&article=00010&type=abstract))

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 (http://ajp.amjpathol.org/cgi/content/abstract/157/1/37)) 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 (http://www.sciencedaily.com/releases/2008/02/080218134633.htm)


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.

---


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.

---

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.

txmarinemom
12-10-2009, 12:11 AM
Many cases of IIS will resolve themselves completely by skeletal maturity.

Dingo,

You're doing that thing again ... making facts based on your own theories.

Some things that stick out in my mind about your post:

A) Define "many".
B) If CTDs are prevalent in IIS cases, how do they resolve?

Pam

tonibunny
12-10-2009, 03:22 AM
Most cases of IIS do resolve spontaneously, Pam :) That's a known fact although I don't have any statistics to back it up. In these cases though the scoliosis is very mild. There's a method of measuring the angle of the ribs to the vertebrae (called RVAD, devised by Min Mehta of infant serial casting fame) and usually, kids with a RVAD of under 20 degrees will resolve. Cases of mild scoliosis like this are actually a lot more common than people think, and they need no treatment apart from very regular observation to ensure that they aren't progressing; the children usually just grow out of the curve.

However kids with more serious scoliosis tend to progress relentlessly and it does make me wonder if their scoliosis can have the same etiology as the resolving type. It doesn't seem likely to me. That's a personal feeing rather than being based on anything I've read though!

Truly progressive infantile idiopathic scoliosis is extremely rare. I won't be at all surprised if my scoliosis ends up being attributed to EDS and stops being classed as IIS.

Dingo, I will read your frog study further. My own response to people claiming that scoliosis was due to a balance problem was due to the fact that these people said it was a "response of the body in not being able to deal with being upright" and of course, I wasn't upright when my 62/40 degree scoliosis was first diagnosed!

mamamax
12-10-2009, 05:58 AM
Cases which resolve spontaneously are as much a mystery to me as the condition itself.

Postural and/or hysterical scoliosis comes to mind and may play a part in some cases which resolve spontaneously?


Postural Scoliosis — Also known as "hysterical scoliosis," postural scoliosis may be a result of pain, as a patient tilts to relieve the pain. It can be reversed by relieving the pain or by having the patient lie flat. X-rays don't show any abnormality of the vertebrae.
http://www.ucsfhealth.org/adult/medical_services/spine/deformity/conditions/scoliosis/signs.html

Children and adolescents develop so-called 'hysterical' scoliosis in response to psychological distress [30,31]. Hysterical scoliosis clinically may be indistinguishable in appearance and magnitude from that caused by other factors, and the diagnosis has been applied incorrectly, for example, in curvatures that develop in response to bone tumors [32-34]. Yet, as with any functional scoliosis, the curvature straightens in response to bending sideways.
http://www.scoliosisjournal.com/content/1/1/3

tonibunny
12-10-2009, 06:19 AM
Interesting, but resolving cases of IIS are structural curves, and don't drop out when the child is lifted up or lies flat. They are definitely a physical problem, even if they started off as a response to pain or stress.

An infant's bones are very soft and it could be that assymetric growth on one side of the body catches up with the other whilst the bones are still soft enough to respond (that's just an idea I've had though, and is not based on anything I've read). The fact that infants have such soft bones means that serial casting can often actually CURE scoliosis in children if you get them young enough :)

Pooka1
12-10-2009, 06:36 AM
This IIS discussion is interesting for many reasons.

I have a suggestion... perhaps we can have a new area of the forum for people booting up on the literature. People starting on the long, long journey of trying to get their arms around the literature in some small area of scoliosis (which itself is a huge area). It would be people posting papers and commenting on them but there would be a disclaimer that these were not MD/PhDs and that these people have zero training and patients and parents should know that before reading.

Opinions should fly freely and with gay abandon but counterfactual material should still be out of bounds.

I think that would be fun and I would contribute my lay speculation. I suggest, "Hysterical Scoliosis" as the name of the area of this forum.

The problems with not fire-walling this off from the rest of the forum are legion. People will still stumble into the area and misunderstand but hopefully they will ask questions and be told that it is lay speculation.

The other suggestion about Dingo starting a blog for this material is a good one also. He could post all of that here if appropriately qualified. But that doesn't happen so we need to do something else in my opinion.

tonibunny
12-10-2009, 07:02 AM
Hopefully this is what the Research forum here is intended for? It's fascinating to read studies and speculate on various things to do with scoliosis, but everyone should be responsible for making absolutely sure that they don't mislead anyone else. This is why I'm being extra careful to point out where things are my own idea or point of view :o

Maybe it would be a good idea to have a note on the Research forum, stating that the opinions therein are those of lay people with no medical/orthopaedic training (unless otherwise stated)?

hdugger
12-10-2009, 12:33 PM
I'm in agreement with Toni. I think a forum labelled "Research" with a disclaimer at the top is an adequate wall. It's certainly more safeguarded than most of the information on the net. Beyond that, you have to trust that adults are capable of reaching their own conclusions.

Beyond posting research, I'd be very interested in gathering some rough data. Specifically, I'd like to start gathering *any* information on people who have reduced a significant curve without surgery. We'd have to define both what is a significant curve and how "reduction" is measured.

I don't mean this to replace peer-reviewed research, but I would like to have some datapoints that we could look at to begin to get a rough handle on this.

Pooka, are you in agreement that a "significant" curve (whatever we define that to be) never spontaneously reduces? Do we need to confine it to adolescent and adult only? Or can we include juvenile? If we can agree on that, we can look at these data points without worrying about a control group, since the natural progression of the disorder is the control (i.e., since scoliosis curves never reduce on their own, any evidence of a reduction is a data point).

txmarinemom
12-10-2009, 12:43 PM
Most cases of IIS do resolve spontaneously, Pam :) That's a known fact although I don't have any statistics to back it up. In these cases though the scoliosis is very mild. There's a method of measuring the angle of the ribs to the vertebrae (called RVAD, devised by Min Mehta of infant serial casting fame) and usually, kids with a RVAD of under 20 degrees will resolve. Cases of mild scoliosis like this are actually a lot more common than people think, and they need no treatment apart from very regular observation to ensure that they aren't progressing; the children usually just grow out of the curve.

However kids with more serious scoliosis tend to progress relentlessly and it does make me wonder if their scoliosis can have the same etiology as the resolving type. It doesn't seem likely to me. That's a personal feeing rather than being based on anything I've read though!

Truly progressive infantile idiopathic scoliosis is extremely rare. I won't be at all surprised if my scoliosis ends up being attributed to EDS and stops being classed as IIS.

Well, I stand corrected. Apologies, Dingo. Looks like I'm the poo-poo head today(or whatever it was that hdugger said that was so funny).

Carry on ...

mariaf
12-10-2009, 02:24 PM
Most cases of IIS do resolve spontaneously, Pam :) That's a known fact although I don't have any statistics to back it up. In these cases though the scoliosis is very mild. There's a method of measuring the angle of the ribs to the vertebrae (called RVAD, devised by Min Mehta of infant serial casting fame) and usually, kids with a RVAD of under 20 degrees will resolve. Cases of mild scoliosis like this are actually a lot more common than people think, and they need no treatment apart from very regular observation to ensure that they aren't progressing; the children usually just grow out of the curve.

However kids with more serious scoliosis tend to progress relentlessly and it does make me wonder if their scoliosis can have the same etiology as the resolving type. It doesn't seem likely to me. That's a personal feeing rather than being based on anything I've read though!

Truly progressive infantile idiopathic scoliosis is extremely rare. I won't be at all surprised if my scoliosis ends up being attributed to EDS and stops being classed as IIS.

Dingo, I will read your frog study further. My own response to people claiming that scoliosis was due to a balance problem was due to the fact that these people said it was a "response of the body in not being able to deal with being upright" and of course, I wasn't upright when my 62/40 degree scoliosis was first diagnosed!

Hi Tonibunny,

I'm interested in this because my son was diagnosed with IIS before age 2. I do know quite a few children who are that young and have scoliosis that did not resolve on its own (a lot of the kids in Mehta casts fall into this group). On the flip side, I also know a few IIS cases that did resolve on their own.

I don't know if I would say "most" IIS cases resolve on their own, but maybe you're right - it just surprised me, I thought that it was a portion of them but not the majority - I could be wrong. Although you say a lot of these were mild curves so, yes, I would agree those tend to be self-resolving more often. Maybe I'm thinking of kids who are diagnosed with, say, a curve in the 30's or even 40's - if I had to guess, I would not say most of these curves resolve on their own. Again, I could be completely wrong.

I do agree that in some cases of non-resolving IIS, a known or suspected CTD is involved.

So, Pam, the jury may still be out - I'm not entirely sure you deserve the title of "poo poo head" today :)

I don't think anyone knows for sure the percentage of IIS cases that resolve on their own - although if there are any statistics out there that anyone is aware of, I'd be interested in learning more.

tonibunny
12-10-2009, 03:09 PM
Hi Maria :)

I also know a fair few kids with IIS. The ones we know via the support groups, though, are those that need treatment. My own consultants have both told me that I'm one of the unlucky minority that had a progressive curve, and it's well documented that minor curves are relatively common. By minor, I mean really minor - often not much more than 10 degrees. I wouldn't be surprised if there are cases which aren't even diagnosed before they resolve.

The following book reckons that 96% of cases of infantile scoliosis resolve spontaneously, which has really surprised me even though I knew that the majority of all cases do!:

http://books.google.co.uk/books?id=VRnFkfvRT4EC&pg=PT83&lpg=PT83&dq=resolving+infantile+scoliosis&source=bl&ots=_PMf7IJ2xp&sig=iNNd8MOoinEhTw0YYaPgLlI-gek&hl=en&ei=G1EhS9SSEoSu4QbxtoTdCQ&sa=X&oi=book_result&ct=result&resnum=10&ved=0CEkQ6AEwCQ#v=onepage&q=resolving%20infantile%20scoliosis&f=false

A quick Google on the subject shows that one of the mums in the Infantile Scoliosis Group was told by her child's consultant that 85% of cases resolve, and even that seems like a surprising proportion. Whatever the true statistic, it's agreed to be a lot, anyway.

I was at Stanmore when Min Mehta started trialling her casts, however I was treated by her colleague Mr Edgar instead. I was already over 2 when she started doing the casts, and my curves were far too large for her to try to treat (I believe she initially tried them out with curves under 40 degrees). I started out with Minerva casts and later on I did have EDF casts, but they were intended to control my curves rather than to try to get them to resolve. I met Min Mehta several times as she'd come round the children's ward and have a look at me every now and then :D