Pilates Miracle?

[jrnyc]

hey Sharon
started reading with "Adult scoliosis can be reduced through specific SEAS exercises: a case report"
Alessandra Negrini1, Silvana Parzini1, Maria G Negrini2, Michele Romano3, Salvatore Atanasio3, Fabio Zaina3 and Stefano Negrini3*
OK...well, case reports are not exactly "thousands"
i also notice the distinctions made about posture vs deformity, etc...
i will keep reading....but i know that i am not buying the adults reducing their
curves stuff....i think a few things might hold progression at bay for a while...
maybe relentless exercise is one of them...
but i do not believe that holding back the tide means the progression isn't gonna' happen...

i love the one case study stuff....
i know lots of professionals who like to use that approach to "prove" their theories...

jess

[Pooka1]

hey Sharon
started reading with "Adult scoliosis can be reduced through specific SEAS exercises: a case report"
Alessandra Negrini1, Silvana Parzini1, Maria G Negrini2, Michele Romano3, Salvatore Atanasio3, Fabio Zaina3 and Stefano Negrini3*
OK...well, case reports are not exactly "thousands"
i also notice the distinctions made about posture vs deformity, etc...
i will keep reading....but i know that i am not buying the adults reducing their
curves stuff....i think a few things might hold progression at bay for a while...
maybe relentless exercise is one of them...
but i do not believe that holding back the tide means the progression isn't gonna' happen...

i love the one case study stuff....
i know lots of professionals who like to use that approach to "prove" their theories...

jess

Because that one woman was the only one one of many adults doing the PT, it seems like either only she was willing to ramp up the PT to where it could account for the large reduction OR her biology/curve is uniquely amenable to SEAS PT or both. I haven't seen where they have been able to replicate the result with anyone else.

By the way, her case is a case of bracing only delaying progession, one of my hypotheses that I have thrown out there that should be formally researched in my opinion. It is the first such documentation of bracing only delaying progression that I have seen rigorously shown in the literature so it may not be common. She may be unusual in that regard also. Who knows.

[TAMZTOM]

My son has congenital scoliosis and kyphosis (the apex of the curve is 60 degrees from plumb in both planes), and it appears that he's self-fused at the apex of the curve. The good news is that it slows down his progression, and the bad news is that the self-fusion won't allow any correction.

Your positive perspective, I've no doubt, has and will also help your son. The self-fusion must make your devising an appropriate exercise program much more complex, well done. One of our 'experts' opined that Tamzin too was definitely congenital, then changed his mind. It is entirely possible that she is, but, given her 'configuration', we're faced with the same mechanical issues as in AIS or JIS.
I've worked with an adult American friend from Germany and her daughter (50 and 30 degree curves) who also has thoracic hyper-kyphosis. She IS correcting now, quite significantly; appropriate K Schroth RAB is in large part responsible for the correction. She does not have fused vertebrae though. Wow...that is a tough one!

Even with that, there's a tremendous difference in his appearance with massage and exercise. He used to have the typical "head forward" posture that shows up with kyphosis - his massage therapist helped him to return his head to a neutral position. He also just looks straighter, even though I'm sure the curves underneath are the same. And he feels better about himself. He did stop progressing at the time he started serious exercise, but I suspect that's just a coincidence with when his growth spurt stopped (because he grew a beard at the same time).

I just slapped myself again. We still haven't deeply looked into massage! We have other friends arriving from the USA next week who are more acquainted than we with massage--we'll be looking to soak up the massage treatments. Tamzin doesn't have the common head lean forward. The German friend above's daughter has the same curvature as Tamzin, but has the forward leaning neck, now becoming an issue as the forward lean loads the lower spine quite heavily. I'll relay your experience to her.

Surgery isn't an option for everyone. Our surgeon is *very* hesitant to go in and fuse when my son has no pain, no progression, and a nasty syrinx that makes the whole operations much more complex and risky.

We also have the nasty syrinx, C2 to T11. At C2, it is WIDE. Our neurosurgeon refuses to do any syrinx draining ops, period, but wanted to decompress Tamzin's brain-hernia. We declined.

Bracing is not an option with congenital scoliosis.

Interestingly, Tamzin WAS braced (SpineCor) despite the possibility that she's congenital. Our spine surgeon 'categorically' classifies her as JIS. Another SS classified her as AIS. Quite an eye-opener, all these different OPINIONS. (She no longer wears the brace.)

Until then, thank heaven for the research in exercise. We'd be in a far, far worse place without it.

Ditto. Keep up the good work, both of you.

[TAMZTOM]

My son is much older then your daughter (turning 24 next week), and all those years of being in the "wrong" position really locked up his muscles. My massage therapist had no other experience with scoliosis/kyphosis, but she's bright and has a good education in therapeutic massage, and so was able to loosen up some of the places where his muscles (*not* his bones) were holding him in an odd angle. I know Martha Hawes spent a long time just massaging before she tried anything else. Some of these muscles can't just be stretched - the existing knots have to be broken up.

Despite Tamzin's youth, she had some serious 'brick-like' muscle structures last year--lower left lumbar and upper right thorax. Fortunately, we've been able to build up the opposite sides quite well, this relieving the bricks. (Legs too were tight--a lot of running. They too have relaxed off with appropriate stretching.) We had daily massage for 4 weeks at the Schroth clinic--best part of Tamzin's long days. My wife and I do some rudimentary massage, but we need experience on this front--the deep massage stuff I would never try on my own.

So, there is some combination of massage and exercise which helps, particularly in mature patients, but proceed with caution if inflexibility is what's keeping you from progressing.

Wise caution. This is often presented as a dilemma: you can't correct rigid spines, but if you loosen them, you'll flop. Modalities like Mehta side-shifting are wonderfully resolving, these increasing flexibility and mobility while simultaneously strengthening the paraspinal stability muscle to 'take up the slack'.

One thing I've really noticed with my son since he started exercising is that he no longer leans into his curve. He used to just collapse in the direction his spine seems to want to go, which made his curve seem much larger then it was.

Neuromuscular gains stopping scoliotic reflex. Excellent. We still see these scoliotic reflexes in Tamzin: e.g., being chased upstairs by my son, I've detected thoracic rotation that she almost subconsciously now resists. We use ballet training and other stuff to teach her corrective movement (much like Wendy Whelan would do, knowing what muscles dominate, she's trained herself to recruit the typically dormant ones).

[rohrer01]

One of our 'experts' opined that Tamzin too was definitely congenital, then changed his mind. It is entirely possible that she is, but, given her 'configuration', we're faced with the same mechanical issues as in AIS or JIS.

Interestingly, Tamzin WAS braced (SpineCor) despite the possibility that she's congenital. Our spine surgeon 'categorically' classifies her as JIS. Another SS classified her as AIS. Quite an eye-opener, all these different OPINIONS. (She no longer wears the brace.)

It's my understanding that in congenital scoliosis there is a hemivertebra. Otherwise it's IIS, JIS, or AIS.

On the subject of rock hard muscles, I have my own experience. These are VERY difficult to break up. I've had massage, deep tissue massage, pressure point therapy, trigger point injections and finally Botox injections directly into the muscle mass. NONE of this has done a thing to break up this rock hard upper trapezius that I have. Is there even any other treatment? These rock hard muscles are muscle dystonias secondary to scoliosis. It is apparently more common in scoliosis than I thought. I never even thought about what it was "called" except severe muscle spasm. This is where much of the pain of scoliosis comes from. Just imagine how those muscles squeeze on the nerves and blood vessels that run through them! NO AMOUNT of stretching has helped either. I used to be an exercise freak in my late teens and learned to stretch properly, so that wasn't the problem. I think it just goes along with the territory of having scoliosis.

[rohrer01]

For some reason, this time your post about muscle spasms reminds me that that's what triggered Martha Hawes to start her self-research into massage and exercise. She was just having these constant muscle spasms, and ended up spending a long time every day just sort of massaging the area to make the spasms stop. If she hadn't started having spasms, she just would have left everything alone.

You have an odd case - I really have no idea how to apply the things I only sort of know to the problems you're facing. My son's case is odd as well, but at least he's not in any pain. I wish we could get you to one of the top surgeons to figure out what was going on with your back. It just seems more complicated then the garden variety scoliosis.

I have regular muscle spasms in my scoliotic areas that twitch and wriggle or just cramp up and can be released. It's really strange feeling when laying on my back. It feels like I'm laying on a bunch of wiggling snakes! I take 60mg of baclofen a day to treat this and it helps but doesn't always stop it completely. The super tight ones are the ones that can't be released. No one seems to think my case is "special". The scoli docs blow my pain off like I'm nuts and I'm afraid to even tell them about the muscle spasms. Oh well.

I'm on an upward roll right now. Today my pain is minimal compared to what it has been for the last ???, so I'm not complaining too much today. It's not gone, but tolerable. I had a lady bring me to my senses when I walked into her office with my grandson. She said, "You seem to be able to pick up your grandson okay." I told her I took a LOT of meds to get to this point. But it made me think how lucky I am that I CAN do the things that I do. There are so many people worse off than me. I can ride my bike, run after my very quick grandson, work in the yard (with pain...but still do), walk, go berry picking, play the piano (not well), drive a car, go grocery shopping, play at the park and swing along side my grandson, etc... You get the idea. I sometimes get so caught up in what I can't do that I forget the things I can, even if it brings a measure of pain with it. I can still do many things!

I think for a lot of us, we need to focus on the things we CAN do. Those dealing with children NEED to help their kids focus on these positives as well. Make doing these things fun and enjoyable. Then the limitations seem less or momentarily forgotten. If something hurts, switch gears to something that doesn't hurt. I've learned that I CAN'T do all the yard work in one fell swoop like I used to be able to. Now I've been working on my yard for the last three days and haven't yet accomplished what I would in one day. But, I quit when I start hurting. It's frustrating, but then I divert my attention to something else.

I keep up with my exercise, which at first sapped my energy. Now it give me energy to continue my day. Exercise is good for everyone, especially us scolis, IF we are able to do it. If it hurts, don't do it. Not all of us CAN do these exercises. But for those of us that can, go, go, go! It's probably NOT going to cure us, but feeling in shape and eating healthy always makes a person feel at least a little better.

[LindaRacine]

It's my understanding that in congenital scoliosis there is a hemivertebra. Otherwise it's IIS, JIS, or AIS.

It's actually just a malformation of bone. Some of those malformations are hemivertebra(e), but not all.

--Linda

[LindaRacine]

I wish more of you could see this from a distance instead of from your current viewpoint. The answer, I'm sure, is somewhere in the middle.

In this current debate, as in most, I strongly feel that neither side is correct. Here are the facts:

• Exercise may help some patients avoid surgery.
• A lot of patients who have scoliosis surgery, end up having to have more surgery.
• Some people who have exercised even ridiculous amounts of times, including potentially Martha Hawes, may end up having to have surgery regardless of whether they exercise.
• As far as I know, there has never been a single person who got a curve correction through exercise, has ever lived a long life, and died without ever needing additional treatment.
• I'm reasonably certain that some patients with large curves, who have never exercised, have lived long lives, and died without having to have scoliosis surgery.

If everyone stopped making up claims that serve their purpose, these debates would be far more civil. Can't we all agree that exercise is great if you're the type of person who can really put the time in, but there's no proof that exercise can permanently reduce a patient's curves.

--Linda

[Pooka1]

Linda,

I have written posts that strike a similar balance as you did in my opinion.

Sharon

[rohrer01]

It's actually just a malformation of bone. Some of those malformations are hemivertebra(e), but not all.

--Linda

Thank you, Linda. I thought a hemivertebra was just a malformed vertebra. But I'm assuming that it is a wedge shaped malformation now?

[rohrer01]

I wish more of you could see this from a distance instead of from your current viewpoint. The answer, I'm sure, is somewhere in the middle.

In this current debate, as in most, I strongly feel that neither side is correct. Here are the facts:

• Exercise may help some patients avoid surgery.
• A lot of patients who have scoliosis surgery, end up having to have more surgery.
• Some people who have exercised even ridiculous amounts of times, including potentially Martha Hawes, may end up having to have surgery regardless of whether they exercise.
• As far as I know, there has never been a single person who got a curve correction through exercise, has ever lived a long life, and died without ever needing additional treatment.
• I'm reasonably certain that some patients with large curves, who have never exercised, have lived long lives, and died without having to have scoliosis surgery.

If everyone stopped making up claims that serve their purpose, these debates would be far more civil. Can't we all agree that exercise is great if you're the type of person who can really put the time in, but there's no proof that exercise can permanently reduce a patient's curves.

--Linda

I totally agree. I hope my post didn't spark this comment. And as far as looking at this at a distance, it's hard to do when you live with it and don't know a whole lot of people with the condition willing to talk about it. You are in a far better position to see it from afar while at the same time seeing it up close and personal due to the fact that you have been living with it yourself and also work with scoli patients. I wish that I were in your line of work. I would like to help others and be able to look at it more objectively at the same time.

I know my post was, well...self-centered. But I felt it was pretty balanced as far as the reality of exercise and scoliosis. I personally feel, at least in my case (I'm all I have to draw on), that exercise is good for making scoliosis pain better in many cases. Today is the first day I've felt truly better, but have still taken percocet twice. So, I apologize for the introspection. I should probably stay off of topics like this one if all I can add is personal experience and personal opinion based on my own scoliosis.

[mariaf]

I might get run over by a bus tomorrow, so what's the point of doing anything today. What a bummer. Tamzin might get a cold, be laid up for a few weeks with something, so I'll just get her fused. Your concerns are naive at best. (More absurd than that actually--e.g., BED REST used to be used as a treatment! So much for the risk then.)

Sharon actually mentioned Dengue fever (which I don't think upset you as much for some reason) and I was just elaborating on it. I was stating a fact about what could happen in a case like that - there was really no need to go on a tangent. I am far from naive and while I try to be very civil in my posts, do not confuse that with thinking that I will be intimated. I could say you are naive for some of the things you post, or find other ways to criticize things that are sometimes posted - but I honestly don't see the point in those sort of personal verbal attacks. They accomplish nothing and diminish the credibility of the poster.

[mariaf]

i see name calling coming from only one person on here...
it casts a very negative light on the person using such words...
talk about "repugnant"

jess

I actually wrote the above post before seeing this from you, Jess. Glad I'm not the only one tiring of the childish name calling. It really needs to stop. If folks can't have mature, civil conversations, the rest of us should not be subjected to their verbal tantrums.

I guess folks from NY have little tolerance for such antics :-)

[jrnyc]

true, Maria
maybe this person is not used to New Yorkers...
we tend to be really nice people...some people seemed shocked
by that after 9/11, but New Yorkers were not surprised at how kind folks were...
but...we will not put up with bullying, plain and simple...
name calling is for school yards...and we all know it doesn't belong there, either....

jess....& Sparky