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carolmr
07-06-2012, 10:26 PM
I saw the actress Rebecca Romijn on a talk show a couple of years ago and she said she had had scoliosis since she was a teen. But since taking up Pilates, it has disappeared. Her words were (I'm paraphrasing): Pilates straightened my spine right up! Does anyone believe this could have been possible?

jrnyc
07-06-2012, 10:46 PM
nope....not unless it was a barely measurable curve...
what size was her curve...?
"miracle cures" usually turn out to not be true...
i am not saying pilates isnt a good exercise regimen...
but i do not believe any exercise regimen can "cure"
scoliosis...i think children and teens with very small curves
can get the most benefit from exercise...
for adults with curves large enough to measure and
cause concern, i do not believe any exercise will make
the curve go away...the person may feel better, but that
is not the same as having the curve "disappear"

jess

carolmr
07-06-2012, 11:16 PM
Ms. Romijn never said what her curve was pre-Pilates. Even if it were a small curve, I find it hard to believe that exercise could have straightened her spine right up!
BTW, I apologize for posting this in the Surgical section. I should have posted it in the Non-Surgical section.

LindaRacine
07-06-2012, 11:44 PM
I believe her spine can look straight. Elise Browning Miller is a yoga teacher who created a program for scoliosis patients. Elise has scoliosis herself. I don't remember the exact degrees, but I believe it's 50-60 degrees. If you look at her back when she's wearing a leotard, she looks like she doesn't have scoliosis. Because she does an intense program of exercise, she can use her muscles to hold her spine relatively straight. With that said, it is my belief (and probably the belief of most specialists) that if she ever stopped exercising, her curve would return to its pre-yoga degrees. Nonetheless, she has managed to avoid having surgery. So, as I said, I do think it's possible to "straighten" one's spine. Unfortunately, I suspect most of us don't have the fortitude to stick with a program that requires hours of exercise every day.

JenniferG
07-07-2012, 02:03 AM
I suspect the required regimen of daily exercise to achieve such a result would make scoliosis surgery look tame. <wink>

Pooka1
07-07-2012, 09:06 AM
I suspect the required regimen of daily exercise to achieve such a result would make scoliosis surgery look tame. <wink>

Good one. :-)

While that is certainly true for adults, the jury is still out for kids. It's possible enough targeted work during the growth spurt might result in holding or reducing a curve, especially for the early onset crowd. Who knows.

titaniumed
07-07-2012, 11:55 AM
Pilates might have built up her core strength, and helped with pain control, but as far as for straightening her spine, its highly unlikely. The amount of physical effort required for an adult(to try to straighten) is just mind boggling. X-rays are the only method to inspect spinal angles. We see what happens when scoliosis is ignored......just because one might be feeling better doing pilateís and assuming whatís happening without timely x-rays can lead to heartache.

The Wendy Whelan story is a similar story. But then again, she is CONSTANTLY stretching and moving as a professional ballerina. She also is maintaining.....I wonder how many hours per day she works out? It has to be most of the time.
------------------------------------------------------------------------------------
I am weary about OVER exercise......My father over exercised himself, had a cardiovascular system that would make superman jealous and ended up with ALS. I have no proof, there is no proof, just an assumption. I thought about posting on the ALS boards, but its just too difficult. He was also a scoli. (50 degree single thoracic curve)

He never talked about scoliosis, ever. People that went through the great depression are changed, the old school mentality. Work and save your money, ALL of it. And if there is any pain, its not that bad. Some of these seniors are totally battle hardened. A few world wars, and total financial destruction, scoliosis isnít even worth mentioning.

I found out after he passed, by the doctors reports.

Thanks for reading.....

Ed

TAMZTOM
07-07-2012, 04:23 PM
Pilates straightened my spine right up! Does anyone believe this could have been possible?

Absolutely possible--ask Martha Hawes (approx 50% correction as an adult). It takes effort, but the spine can be straightened.



I suspect the required regimen of daily exercise to achieve such a result would make scoliosis surgery look tame.
I doubt there is anything that can make surgery look tame. As LindaRacine just suggested, it can be done, but it requires commitment. What I can't quite fathom is how people baulk at some healthy exercise!

Pooka1
07-07-2012, 08:09 PM
What I can't quite fathom is how people baulk at some healthy exercise!

I guess it depends on how you define "some" and also whether you distinguish between achievement and maintenance.

Hawes has documented hours and hours of daily work for years that she used to achieve her decrease. It is a mystery to me how she was able to keep her job during that period. Now, she seems to get by with less to maintain her decrease but I would want her to say that explicitly and clearly to believe it. Also, she had an unusual approach that others may not be able to emulate and that doesn't even apply to non-thoracic curves.

And the yoga woman may or may not be able to maintain on a small amount of exercise if she wasn't doing yoga all day every day. It's her job as I understand it. She may not count all that other work though maybe it should count.

The SEAS woman had her exercise ramped up to an unknown amount in order for her to decrease her curve. For all we know she is exercising several hours every day if she is even still at it. And she was a unique case... they couldn't seem to replicate those results with other patients. I suspect she was the only one willing to do all that PT every day forever.

The details matter and probably explain why there aren't a million people like Hawes and the yoga woman. Otherwise they would be a dime a dozen and adults would never need surgery. But we don't see that.

TAMZTOM
07-07-2012, 08:54 PM
I guess it depends on how you define "some" and also whether you distinguish between achievement and maintenance.
Those are important points. "Some": too much is bad...injury, fatigue, over-training, working the same muscle group to often, insufficient recovery...i.e., basic principles of exercise and training. Re. "achievement" trial and error is necessary in part because of the 'war' on exercise, the negative press, the irrational negativity and ignorance of the surgeon dominated medical field, the irrational and make-a-buck orientated non-invasive field competing instead of uniting. Institutions like SOSORT are making headway into unifying methods to CURE and treat scoliosis. When surgeons like Marc Asher address a crowd of assembled surgeons and say, "Of the thousands of fusions I've performed, now, on the eve of my retirement, I realise that I should only have ever done one," then sensible people should start to think a little deeper. Eerie silence....


Hawes has documented hours and hours of daily work for years that she used to achieve her decrease.
Now, she seems to get by with less to maintain her decrease...
Enough said really....


And the yoga woman may or may not be able to maintain on a small amount of exercise.
Ditto...


The SEAS woman had her exercise ramped up to an unknown amount in order for her to decrease her curve.
Ditto...


I suspect she was the only one willing to do all that PT every day forever.
The scoliosis non-invasive clinics in Europe have six month waiting lists...that's a lot of eager participants. The proliferation of 'yoga for scoliosis', 'Pilates for scoliosis', Clear, Schroth, SEAS, FITS...etc...that's a heck of a lot more eager participants. I only address your questioning of how many are willing to do PT.


The details matter and probably explain why there aren't a million people like Hawes and the yoga woman. Otherwise they would be a dime a dozen and adults would never need surgery. But we don't see that.
So we go back to the first point, the ignorance, surgeon dominated medical field, etc...the USA and UK in particular 'DO NOT DO' non-invasive treatment. Until that changes, the surgeons suck up all the clientŤle, so there aren't 'millions' left to do any bloody exercise!

In my opinion, there will always be many who are not prepared or able to exercise to treat scoliosis. There will be always be many for whom exercise is too late, many who need surgery. But the USA and UK are now being slammed by surgeons and other medical professionals for rushing into surgery instead of treating the condition with non-invasive treatments. As everyone posting in here would probably agree, with a condition that worsens with asymmetrical mechanical loading, the "watch and wait" policy in the USA and the UK is NOT, as Min Mehta quietly says, "...is NOT a treatment." It's like playing with traffic.

Pooka1
07-07-2012, 09:12 PM
When surgeons like Marc Asher address a crowd of assembled surgeons and say, "Of the thousands of fusions I've performed, now, on the eve of my retirement, I realise that I should only have ever done one," then sensible people should start to think a little deeper. Eerie silence....

Can you post the entire citation for this? What is the one case? I can't imagine what he is talking about.

My response would be Asher wasn't looking at going through high school as a misshapen hunchback like my one daughter would have had to do if she even lived absent surgery. Instead she looks and feels normal and has a bright future that would not have been possible absent her surgery. And what about the other kids with huge curves? I think Asher would have signed up for surgery also had he been in her shoes. I really can't fathom why he would say that.

TAMZTOM
07-07-2012, 09:19 PM
Can you post the entire citation for this?'
That was relayed by 'experts' who listened to his speech.


What is the one case? I can't imagine what he is talking about.
I can imagine what he is talking about. So did everyone else in the room.


My response would be Asher wasn't looking at going through high school as a misshapen hunchback like my one daughter would have had to do if she even lived absent surgery. Instead she looks and feels normal and has a bright future that would not have been possible absent her surgery. And what about the other kids with huge curves? I think Asher would have signed up for surgery also had he been in her shoes. I really can't fathom why he would say that.
Sharon, that was a regnant insult to every person reading your post.

Pooka1
07-07-2012, 09:25 PM
That was relayed by 'experts' who listened to his speech.

I suspect something got lost in the translation.

It may have been quote-mined inadvertently.

It's not rational as relayed or, if true, is the height of hypocrisy.

Pooka1
07-07-2012, 09:41 PM
Sharon, that was a regnant insult to every person reading your post.

That is what scoliosis did to my daughter and how I can KNOW Asher would not withhold surgery in his daughter's case. My daughter's curve was moving at 5* a month for the entire observation period. If there was anything other than surgery at that point I'd like to know what the hell it would be. It would be beyond cruel to withhold surgery and I am assuming he is not capable of it.

I am chasing down the remark and will report back.

Pooka1
07-07-2012, 10:08 PM
When surgeons like Marc Asher address a crowd of assembled surgeons and say, "Of the thousands of fusions I've performed, now, on the eve of my retirement, I realise that I should only have ever done one,"

I did a little digging around.

I am betting he is talking about non-scoliosis fusions. That would make perfect sense. That is the most needless surgery going these days as far as I understand. It's scandalous.

I again suggest there is no way he can possibly be talking about fusions for AIS. It's too cruel to consider.

Pooka1
07-07-2012, 10:12 PM
http://www.spine-health.com/doctor/spine-center/university-kansas-hospital-marc-a-asher-md-comprehensive-spine-center

If he really thinks fusion of AIS is not warranted then this takes hypocrisy to symphonic levels.

If it doesn't make sense then it probably isn't true.

carolmr
07-07-2012, 10:18 PM
Titaniumed, I understand what you're saying about your dad. My dad had scoliosis (it runs in his family and I assume I inherited it from him). It got worse and worse over the years, but he never spoke about it or complained about it. It was difficult for him to find shirts that fit correctly, but that was a day in the park compared to Iwo Jima. I guess everything is relative. God bless him, he lived to be 85. He had successful heart surgery but died of hospital-acquired MRSA. But I don't have his outlook on life. I wasn't injured on Iwo Jima; I never lived through the Great Depression. So sometimes my scoliosis takes up too much of my time, so to speak. I would love to wear a bathing suit and nice tops, but I can't because I'm ashamed of my back. My shoulder blade is protruding even more, one hip is higher than the other, and one leg is shorter than the other. My kyphosis is worse. I haven't been to an orthopedic doctor in years, so I don't know what my curve is now. I would love to know if I'm a candidate for surgery, but after my dad's experience with MRSA, I'm afraid of surgery.
I don't think that what Sharon said is repugnant. Sometimes when I look in the mirror from the side, I think I look like a hunchback. I have no idea what other people think of my back and I don't think I'd want to know.

Pooka1
07-07-2012, 10:28 PM
I don't think that what Sharon said is repugnant. Sometimes when I look in the mirror from the side, I think I look like a hunchback. I have no idea what other people think of my back and I don't think I'd want to know.

Thank you for your perspective. You should not care what others think. But it certainly DOES matter what YOU think!

I saw the damage this was doing to my kids and it required treatment. It is a 1,000% certainty my daughter's life would be ruined absent surgery even if she lived. She probably would have refused to leave the house at some point. If someone doubts how much scoliosis can deform a person and ruin their physical and mental well being then they need to get out more. It is NOT POSSIBLE that I would have withheld surgery from my child nor do I think it is possible Asher would have do so had he had a child like mine.

If it doesn't make sens then it probably isn't true FULL STOP.

carolmr
07-07-2012, 11:44 PM
Sharon, I totally believe you when you say your daughter's life would not be the same if she had not had the surgery. I have been on lots of scoliosis sites and I could not believe some of the pictures I saw. Very bad curves can certainly deform a child's or teen's body.
As far as exercise, I'm 58 and I think that train has left the station for me.
What I wish more than ever is for a doctor or scientist to find the CAUSE of scoliosis.
Scoliosis seems to affect girls more than boys. Why? Because boys' growth is slower and more "even"? Girls seem to have a single growth spurt; maybe this explains why the spine can grow awry. I have no idea what I'm talking about - just thinking about it too much, I guess.

Pooka1
07-08-2012, 12:31 AM
I have no idea what I'm talking about - just thinking about it too much, I guess.

Carol, actually I think you know exactly what you are talking about.

I don't believe any parent here would allow such a deformity to ruin their child's life. I don't think I am adequately getting across how obvious these deformities can get in real life, not just in medical text books. I would not be able to live with myself if I withheld surgery. My child would hate me and she would be correct. It's beyond cruel.

I don't know what the future holds but I damn well saw what was happening in the present. Quality of life matters to people dealing with it. My kids only have one shot at high school. If this surgery goes south later in life, it was STILL the obvious correct choice. We could all get hit by a bus tomorrow. This is a game of cutting losses. It is not understandable in any other terms.

titaniumed
07-08-2012, 01:19 AM
Carol

Even though our fathers might have ignored it, It wasnít wise. They also had that older mentality that hospitals and surgery are extremely scary, that its something you read about in the papers, or happened to somebody else. Things have come a long long way in the last 50 years. There is a concept call health maintenance these days. (smiley face) If the guys flip out about your air cleaner during your oil change, that should be a signal to get x-rays on your spine! LOL They do this every time....Only $24.95. Coffee filters cost 1 cent. Cholesterol is another one to watch, have that blood work done.

If you do not know where you are at with your spine, you really need to go visit a scoliosis surgeon. Get those x-rays, and an evaluation. At least you know where you stand....make your decisions after this meeting. Good spine surgeons will not push you, and understand that even if you need surgery for some reason, we need time to absorb this fact. Gathering sound scoliosis advice from a model on the Ellen show isnít, even if some methods do work for some people. Making an attempt at SEAS or another alt method might be worth it or is worth it if you are much younger.....a whole different situation.

I donít think that many people notice us leaning...most know nothing about this stuff, but everyone has scoliosis or they know someone with scoliosis. I never had any issues with the way I looked, but you really couldnít notice much before or after my surgeries. I had an upper right rib hump and a huge lower left lumbar hump, but it didnít matter all that much. My best friend has a wooden leg,(phocomelia) he had it much harder, at the beach, he used to hop on one leg to get down to the water to go swimming. Scoliosis isnít that bad, there is worse. Much worse.

Did you ever have an MD say that you might need scoliosis surgery some day? Did you ever have x-rays taken at some point? How is the pain?
Ed

jrnyc
07-08-2012, 02:03 AM
my personal opinion.....i do not like anything that even smacks of blaming
a patient for not being willing enuf to exercise...
first ...if it took minor amount of exercise, more would be doing it...
second....i agree that many many many curves are not amenable to exrcise making
a difference in curves...
maybe exercise can make those people feel better...but change their curves...?
excuse me for having an opinion...nope, not buying it...show me,...i want to SEE it for myself
to believe...
i have been in too much pain for several years to exercise anymore...
back when i did, i exercised to feel better and be healthier...
worked for a while, til the discs herniated and pain got overwhelming...
but i did not believe curves of my size, in an adult, could be influenced by
exercise....

i am not a big believer in "miracles" with exercise...
not that i cannot believe a miracle could happen...
but this stuff being discussed doesn't qualify, in my book...
that's just my personal view...
and i don't find anything you said repugnant, Sharon...
i know everything you do is for the good of your daughters....

jess

LindaRacine
07-08-2012, 01:15 PM
Tom...

Can you tell me where you heard that quote from Marc Asher? I'd like to get his clarification on it. If, indeed, he did say it, I'm sure he either didn't mean to say it, or he was talking about some specific condition. In the past, I've found him to be about as level headed as anyone I know.

Thanks.

Regards,
Linda

Pooka1
07-08-2012, 01:30 PM
If Asher really thinks that then he therefore considers all his colleagues (from Boachie and Lenke and Lonner on down) who continue to help kids by doing AIS fusions as evil or stupid. It follows as night follows day.

If it doesn't make sense it probably isn't true. Or Asher is going senile... he was born in 1938 which would make him 74.

carolmr
07-08-2012, 09:22 PM
Ed, I think the last time I went to a surgeon and had x-rays was about 15 years ago. He said my curve was worse than he thought after taking the x-rays. I remember him saying that if it were just two degrees more, I would have a problem. I took that to mean that I may need surgery. I honestly don't remember what degree my curve was. I just know that I lost two inches in height since then and finding clothes that accomodate my shoulder blade is becoming more difficult. I can see for myself in the mirror that my shoulder blade is protruding more and more. Pain? Not too bad. I feel the most pain after long walks, especially if I'm carrying something. Yes, I need to get myself to a surgeon again. I have let too many years pass.
Sharon, I agree with you. I can't believe Dr. Marc is sorry that he performed all those AIS surgeries. Doesn't make sense.

titaniumed
07-08-2012, 11:39 PM
Carol

Well, your not the only one out there, thatís for sure. There are many scoliís with HUGE curves your age. I donít know how they do it honestly. I have brought this up recently on several posts, about going in and at least knowing where you stand. A scoliosis trained surgeon is how you start. If you decide not to have surgery, ask the surgeon what to do. Shots are usually the next step.

I was lucky that I managed to have my surgeries. I was almost rejected, degeneration made things tricky....I could have found another surgeon, but if one surgeon doesnít like what he seeís, chances are the next will notice also. I almost had the door slam shut. I would have died.

Surgeons save lives....For a surgeon to say that his past work was a mistake, well, thatís one heck of a statement...

It must be Dr Weiss.

Ed

Pooka1
07-09-2012, 07:01 AM
Surgeons save lives....For a surgeon to say that his past work was a mistake, well, thatís one heck of a statement...

It must be Dr Weiss.

Ed

We are chasing it down. There is some indication that it might have been hyperbolic and he was just being wistful that surgery was the only option and that he wishes it wasn't. It has been suggested by someone who knows him well that he was just probably worn down with having to tell kids and their families that they need surgery. I can believe that. But it doesn't then follow you would not have done the only thing that could help those kids. That's where the story jumped the tracks. Asher has nothing better for those kids and it is obvious he would continue surgeries if he wasn't retired. The alternative is unthinkably cruel.

It is totally understandable that the idea of this surgery can send parents around the bend and drive them to irrational conclusions (surgeons are evil... surgeons are stupid, etc. etc.). But it's only the ones who have that luxury of not having a kid who needs surgery. That's no coincidence. Once you have a kid who needs surgery then they come around to reality. Some roads are longer than others.

Sharon

Pooka1
07-09-2012, 08:19 AM
It must be Dr Weiss.

Weiss has had at least 30,000 chances to prove PT can avoid surgery. He has so far failed and has basically admitted so in a recent paper. Surgery goes on as ever in Germany and Schroth is still a fringe treatment.

The fact of waiting lists to get into clinics just reflects the desperation of folks to avoid surgery. How many will even respond "some" PT and how many will have the wherewithal to do hours and hours daily as we have seen for the only three ADULTS who seem to have reduced their curve through continuous PT?

The situation with JIS cases prior to the growth spurt CAN'T generally be extrapolated to AIS or adult, the three women in the world who have gone to herculean lengths notwithstanding.

This forum is NOT anti-PT. This forum is pro-reality. Some folks confuse those cases.

TAMZTOM
07-09-2012, 12:00 PM
This forum is NOT anti-PT. This forum is pro-reality. Some folks confuse those cases.

It is obvious that many in here are so intent on retrospectively justifying their decisions to have surgery, they feel the need to knock other methods. Knocking other methods doesn't make a chosen method--surgery, exercise, or bracing--any better. I've repeatedly said I respect the courage of those who've had surgery. I am aware that there are teenagers reading these posts and parents of kids with scoliosis; while aware of that, to use toilet bowl scum talk to describe the condition is disgusting, deserving of pity. What was more pitiful was the flurry of sycophantic asswipes who leapt in trying to sanitise the term.

Surgery, IMO, is necessary for many. I hope it improves. Mature behaviour in here will benefit everyone. It will be salutary for everyone to emerge from the toilet bowl and grow-up.

For quite some time in here, posters have departed because of the anonymous, faceless viciousness of some posters. If such terms and ass-wiping continues, there will be no productive exchange, which would be a loss. I have learned reams from positive exchanges in here; I have learned reams from people who've had surgery.

Keep it above the gutter.

Pooka1
07-09-2012, 12:31 PM
It is obvious that many in here are so intent on retrospectively justifying their decisions to have surgery, they feel the need to knock other methods.

Tom,

This comment implies they had a choice and chose surgery over not surgery. And then trying to justify it like it somehow needs justification beyond the medical indicators. That is FALSE. It would be cruel to choose not surgery in most of these cases. That is NO choice. Please understand that NOBODY would choose surgery if they really had a choice. That would be insane.

People don't always have a choice. You still have a choice. Your situation is different and canNOT be extrapolated to the great bulk of surgical cases. The problem I see is that you are trying to extrapolate to inapproriate cases. That and publicly implying a respected surgeon is wacky but let's leave that aside for now.

Other methods DO NOT APPLY to the surgical cases as far as anyone can say for sure. So for now they are irrelevant. They are orthogonal.

There is a great divide between parents of surgical cases and parents of non-surgical cases. It is completely a function of whether the child is surgical. I fear that divide is not crossable.

Also, this site is NOT anti-PT though it might seem that way because asking for data is sometimes perceived as being negative. Except for McIntire, we are just a random bunch of lay folks adrift is desert of data.

Last, I am sorry my description of what scoliosis was doing to my daughter bothered you. After seeing how much it bothered you, I wish I had stated it differently. But that's the reality of my daughter's case and that reality bites. I do not believe she would continue to leave the house absent surgery. And that is completely valid if so. Scoliosis can ruin your life even if it doesn't kill you. It's not enough just being alive. Please consider that. You don't have to accept it but please just consider it. I think it might lend insight into how parents can allow surgery on their kids. It's really about salvaging the hope of a future in my opinion.

Sharon

TAMZTOM
07-09-2012, 01:39 PM
Please understand that NOBOY would choose surgery if they really had a choice. That would be insane.
I am in contact with a mother whose son progressed rapidly and now has no choice. Ravaging, progressing scoliosis can be horrendous--I agree 100% with that mother's choice to schedule surgery. I would do the same myself as a last resort. I am not anti-surgery in those circumstances. Not at all.


The problem I see is that you are trying to extrapolate to inapproriate cases.
I have never done that. What I do so see though is people extrapolating the NEED to have surgery to inappropriate cases when the condition COULD be treated without surgery. E.g, to paraphrase, 'Exercise won't stop progression.' Mehta, for example, believes that ADOLESCENTS with scoliosis can avoid progression and surgery. That is the nub of this issue: when is surgery the only realistic choice; when is exercise an alternative choice. Exercise simply will not work, IMO, for less than totally committed attempts by those, say, above 35 degrees. Lesser attempts may work for those in the grey zone between 20 - 30 degrees (there is a postural percentage in every scoliotic curve, and that can corrected with less than optimal input). As you know, I believe the commitment required to correct higher end curves must be considerable. Surgery, for some, is a better option for some that making that commitment.


That and publicly implying a respected surgeon is wacky but let's leave that aside for now.
Far from implying he's wacky, his peer respect rating shot up. Enlightened bloke.


Other methods DO NOT APPLY to the surgical cases as far as anyone can say for sure. So for now they are irrelevant. They are orthogonal.
Clearly the other methods do apply. Tamzin, 40 - 44 degrees at age 10, 100% "likely to progress...rapidly." Some say that because she's JIS, it's different. That is a wild, irresponsible, assumption. (Cf., how many AIS are JIS. Late diagnosed early onset scoliosis kids is a way to look at it.) Tamzin is not alone: adults and older kids I am in contact with are correcting their scoliosis, despite their classifications are "100% likely to progress". All that in no way disagrees with the unanimously accepted obvious fact that for many, there is no bloody choice except surgery.


There is a great divide between parents of surgical cases and parents of non-surgical cases. It is completely a function of whether the child is surgical. I fear that divide is not crossable.
The divide does not exist in the minds of the enlightened. E.g., most of the folk I'm in contact with have in the back of their minds that if exercise doesn't work, surgery will be the result.


Finally, this site is NOT anti-PT though it might seem that way because asking for data is sometimes perceived as being negative. Except for McIntire, we are just a random bunch of lay folks adrift is desert of data.
The desert of data is partly due to the necessity of actively treating kids with exercise while the clock ticks. E.g., I have no time to piss about waiting for some half-assed research by Weiss et al to prove the Nuba-f^_&****-catwalk corrects thoracic rotation. As you have posted, there are many eedjit researchers and surgeons out there. There are also many eedjit parents out there who listen to eedjit medics or who are just eedjits in their own right. :-) Some of these "random lay folks" are privy to data that researchers and scientists will never have. E.g., Tamzin trains her proprioception all day, her muscles all day, straightens her bones all day. I see the results, all day. I have more experience of seeing these exercise methods in practice than the theorists who devised some of the methods. I am far from unique--many parents have the same experience.


Last, I am sorry my description of what scolisois was doing to my daughter bothered you. After seeing how much it bothered you, I wish I had stated it differently.
This is an emotional subject--I was concerned by the effect that term could have on other parents or on kids themselves. I am attuned to the feelings of others. As for me personally, I am a robot and only get bothered when it affects other people, not me. To rephrase, I too am aware that 'the dorsal rib arch' or 'prominent rear ribs' can cause embarrassment, ridicule, disgusting prejudice, etc. Language, when it perpetuates prejudice, makes me act. I would not have my daughter compromised by a severely twisted body--she would have surgery and that compromise would be a better option than the alternative. Where that line is drawn, I do not know. I have worked out with a mother with scoliosis, 55 degrees T curve--she looks like superwoman! Tamzin worked out with a 17 yr old girl in London, T55, L27--simply couldn't tell she had scoliosis when she was walking around (only apparent to the non-acquainted when she bent forward).



It's really about salvaging the hope of a future in my opinion.
And that is a commendable aim, one achieved for many BY SURGERY.

I appreciate your concern about the description, consider it restated. :-)

Tom

jrnyc
07-09-2012, 02:20 PM
first surgeon i consulted with used the word "hunchback"
i told him i did not need to hear that from a surgeon.....
i didn't like the guy for several reasons...
but the word only surprised me coming out of a doctor's mouth...

i do not consider words like humpback or hunchback shocking or offensive....
i do expect more from doctors and from knowledgable people
i have not seen any of these discussions sinking to potty mouthed language....
and i see no anonymous posts from anyone...not sure how that could even work...

i believe each parent does what they believe is best for their child...
sad that it is often needed and required surgery...but it would be a lot worse
if that surgery were not possible or available...
and i know there is no parent who takes the decision for surgery lightly....

jess

Pooka1
07-09-2012, 05:55 PM
[COLOR="#0000CD"]first surgeon i consulted with used the word "hunchback"
i told him i did not need to hear that from a surgeon.....
i didn't like the guy for several reasons...
but the word only surprised me coming out of a doctor's mouth...

I hope folks understand I was speaking of my own daughter and I deliberately did NOT sugar coat my comments because people on the street will not either. I wanted to make sure I was getting the point across of how cruel it would be to deny surgery to these children. Asher is not capable of that type of cruelty in my opinion... he has a long track record of helping kids. I am considering emailing him to give him a chance to defend himself. This will turn out to be a misunderstanding.

Apologies to anyone who was offended.... I was making a point.

Pooka1
07-09-2012, 06:08 PM
What I do so see though is people extrapolating the NEED to have surgery to inappropriate cases when the condition COULD be treated without surgery.

Tom,

If the researchers don't know this then how can you know it? Is there a single case where a conservative treatment has been shown to avoid surgery for life in any kid?

And on the issue of JIS versus AIS, I agree there is some failure to accurately rule out JIS in some AIS cases. I do think there is a cavalier aspect to the assignation of AIS versus JIS in 10 year old kids. But I have to assume to has been ruled out in most cases or else they would not be able to say most cases are AIS. Their field, not mine.

And then we can ask if the data in hand support the idea that JIS and AIS respond differently to conservative treatments. I have not done research on this because this is not my field. All I have is the testimonials where we see several cases of actual decreases in JIS with conservative treatment and not a single case of a decrease in AIS. Not one. Nor is there any in the literature such that natural history can be ruled out. That looks pretty different from JIS to my uneducated eye.

There is NO instance on the forum to my knowledge of an AIS case reducing anything close to what Tamzin did. NONE.

I can't prove JIS is a different animal than AIS but the researchers seem to think it groups away from AIS and groups with IIS. They must have reasons. Doesn't mean they are right. It certainly isn't scandalous to claim it as you have implied. Rather it's what the evidence presently points towards. I'm just saying the testimonials on this group map to that thinking. It's all worthless anecdote but it is what it is.

Best regards,
Sharon

TAMZTOM
07-09-2012, 07:00 PM
If the researchers don't know this then how can you know it? Is there a single case where a conservative treatment has been shown to avoid surgery for life in any kid?
Yes, Martha Hawes will never have surgery. 1000s of treated kids in Europe (Schroth, Karski Poland, etc., Min Mehta in London with side-shifting) have not had surgery. It is pedantic to ask for "entire life" research when society spends more on McDonalds than treating unfortunate kids. E.g., I have a few years to try to avoid surgery for my kid; many parents of older kids are doing the same. Side-shifting has evidence of success; TR has evidence for success; Schroth, Dobomed, Seas, Fits...Klapp...etc., have evidence of success. Evidence is not only research results. I and others sift what has been SHOWN to work; we try to make it work better that it ever could for at least one-step removed 'experts', orthotists or surgeons. In our privileged positions as parents, we have the kids all day. In one year, Tamzin, for example, unloads her curves (factor of progression), derotates (FOP), corrects her curves (FOP), has redressed some of the asymmetric musculature (FOP)...etc.
I have friends who have remained at 50 degrees curvature all their adult lives. They are now actively CORRECTING. If I were being pedantic, I'd ask, how many surgery cases can you point out that would have progressed? The question is just as daft--folk make decisions to have or decline surgery based on the information and lifestyles they have at the time. I respect those bloody tough decisions.


And on the issue of JIS versus AIS, I agree there is some failure to accurately rule out JIS in some AIS cases. I do think there is a cavalier aspect to the assignation of AIS versus JIS in 10 year old kids. But I have to assume to has been ruled out in most cases or else they would not be able to say most cases are AIS. Their field, not mine.
Even in our limited experience we've experienced utterly irresponsible variations in diagnosis. The obvious facts from even the parents in here and those I am in constant contact with is that the medical profession lags science, is negligent and, yes, cavalier.


And then we can ask if the data in hand support the idea that JIS and AIS respond differently to conservative treatments. I have not done research on this because this is not my field. All I have is the testimonials where we see several cases of actual decreases in JIS with conservative treatment and not a single case of a decrease in AIS. Not one. Nor is there any in the literature such that natural history can be ruled out. That looks pretty different from JIS to my uneducated eye.
Sharon, how can you say that! "...not a single case of a decrease in AIS." Have you read the above papers? And in here, I've READ reports from parents that their kids are through the peak growth spurts and have stabilized or corrected. Many just disappear when THEIR kids are no longer in imminent danger. I wish they would hang around and share their experience. (Long after Tamzin has been through her growth spurts, I will still be posting in here hoping that some folk can benefit a little--especially when it's first diagnosed--from our journey whether that be successful or not.


There is NO instance on the forum to my knowledge of an AIS case reducing anything close to what Tamzin did. NONE.
Again, the line between AIS and JIS is blurred at best. It is an unproven assumption that there is any substantial difference. Karski, for example, argues that all are cases of early onset, just that they manifest later or are not discovered early enough.


I can't prove JIS is a different animal than AIS but the researchers seem to think it groups away from AIS and groups with IIS. They must have reasons. Doesn't mean they are right. It certainly isn't scandalous to claim it as you have implied. Rather it's what the evidence presently points towards. I'm just saying the testimonials on this group map to that thinking. It's all worthless anecdote but it is what it is.
I agree with what you've said here. As you know, I do not jump on the bracing bandwagon, the exercise bandwagon, or the surgical bandwagon. I research what I can and make my own decisions where there is no proof. The evidence points towards exercise having the potential to save many kids from surgery. Many who try this will not succeed. Many who try this will succeed in avoiding surgery. I feel sorry for the kids who are not afforded an opportunity to succeed. This is the fault of competing financial interest and lack of public interest. It's a disproportionately female condition--is there something in that? It's also turning out to be a billion dollar industry--the professional, money-making infighting between bracers, exercisers and surgeons make me want to vomit. Just help the kids.

Pooka1
07-09-2012, 07:18 PM
Yes, Martha Hawes will never have surgery.

Martha Hawes is a JIS case. (You are making my point. :-) ) Maybe the yoga woman and the SEAS woman also are JIS cases, who knows. There has to be some reason these cases aren't more numerous. Invoking JIS versus AIS is a possible reason (see below). Hawes seems to have accomplished her correction through an indirect means (expanded the chest cavity and imagery to prove it). I hope she can continue her PT the rest of her life as I hoep for the yoga woman and the SEAS woman.


Sharon, how can you say that! "...not a single case of a decrease in AIS." Have you read the above papers?

Tom, there are no long term studies to my knowledge.


Again, the line between AIS and JIS is blurred at best. It is an unproven assumption that there is any substantial difference. Karski, for example, argues that all are cases of early onset, just that they manifest later or are not discovered early enough.

That a good hypothesis too. I don't know how researchers distinguish between the different hypotheses. They must have a way that we don't know about. There must be some reason why they group IIS, JIS, ans aAIS as they do. Not saying it is right but I bet they have reasons.


I agree with what you've said here. As you know, I do not jump on the bracing bandwagon, the exercise bandwagon, or the surgical bandwagon. I research what I can and make my own decisions where there is no proof. The evidence points towards exercise having the potential to save many kids from surgery. Many who try this will not succeed. Many who try this will succeed in avoiding surgery. I feel sorry for the kids who are not afforded an opportunity to succeed. This is the fault of competing financial interest and lack of public interest. It's a disproportionately female condition--is there something in that? It's also turning out to be a billion dollar industry--the professional, money-making infighting between bracers, exercisers and surgeons make me want to vomit. Just help the kids.

I might agree that there is a chicken-egg issue here w.r.t. PT. But then there is Weiss and his ten year, ~30,000 (I'm assuming largely AIS and adult) patient experiment. Whatever anyone thinks of Weiss personally, he can do competent research and he can write it up in a peer-reviewed, publishable format. The unavoidable question then is why hasn't he shown PT avoids surgery? As late as a few years ago, he basically admitted it hasn't been shown. He would arguably have the Nobel by now if he showed it. Just my little opinion.

rohrer01
07-09-2012, 08:40 PM
------------------------------------------------------------------------
I am weary about OVER exercise......My father over exercised himself, had a cardiovascular system that would make superman jealous and ended up with ALS. I have no proof, there is no proof, just an assumption. I thought about posting on the ALS boards, but its just too difficult. He was also a scoli. (50 degree single thoracic curve)

Ed

Ed, my dad wasn't a scoli as far as I know but his mom was. I also think he died of ALS. ALL of they symptoms were there. When they first started, I discussed it with some of the bio people at the university. They thought definitely muscular dystrophy of some sort at the time. Then it sped up so fast it just blew my mind. He had dystrophy symptoms in his legs for years. But the onset of the progressive symptoms took about 8 or 9 years to take his life. No one cared because he was in his 70's. Heck, that's YOUNG! His doctors wouldn't pursue it despite my begging him and his wife. They said it was all the mini-strokes. BLAH! Sorry to be off topic here. It's just frustrating!

rohrer01
07-09-2012, 08:57 PM
I'm jumping in here late. I just want to defend the surgeons here a little bit. I haven't seen one single surgeon who EVER told me not to exercise. When I was a teen, the first thing that they did was put me in PT. I have an extremely exercise resistant curve, unbracable curve, and painful curve. I still exercise. It's not my fault that it has progressed. I agree exercise is good for everyone IF they can do it. For me, it takes a large amount of pain medicine to get into an exercise program until the effects of the pain relieving factors of that program start working. This time, I've been at it seriously for three months and it has had NO effect on pain levels as I had hoped. Granted, it's good for me so I'll keep it up. My surgeon would NEVER tell me to stop. I think it's unfair to say that the surgical industry is such a money maker that surgeons discourage exercise. It just simply doesn't work in every case.

As far as Sharon's statement; some may find it offensive. If they do, it's because that's how they are feeling inside, and it hurts. My deformities, I'm told, aren't obvious at all. So why do I feel so hideous at times? Imagine the inner feelings of those who really do have very obvious deformities. All you have to do is read some of the posts on here from people suffering from very low self-esteem. I wouldn't go and call them "hunchback". Sharon was merely pointing out that her daughter's deformity was that bad and she looked and felt that way. It wasn't name calling. At least I didn't take it that way.

mariaf
07-09-2012, 10:06 PM
I suspect the required regimen of daily exercise to achieve such a result would make scoliosis surgery look tame. <wink>

I second Sharon's nomination of this as Post of the Month. With 3 kids, a husband, a dog, a house to take care of, elderly parents to help out, and a full time job outside the home, including commuting back and forth into the city every day, I'm lucky I have time to shave my legs :-)

Of course, a child/teen might be different, particularly if the regimen was only for a fixed period of time. I'm speaking about adults.

I guess I would also need to be convinced that ANY exercise regimen can permanently correct or stop a significant curve or one that is aggressive in nature. It would be wonderful if it could - but I agree with Jess that, for me personally, I'm just not buying it.

mariaf
07-09-2012, 10:19 PM
i believe each parent does what they believe is best for their child...
sad that it is often needed and required surgery...but it would be a lot worse
if that surgery were not possible or available...
and i know there is no parent who takes the decision for surgery lightly....

jess

So true, Jess.

I was not offended by Sharon's remark either. I know what she was saying about her child and how that child felt about her own body. She was being painfully honest as a parent. Having lived through the teen years with my daughter (who does not have scoliosis), I know how self-conscious girls can be, even with things much less serious than scoliosis. Of course, it was also a health issue for her daughter, with a curve that would not stop progressing - definitely one of those cases where, as you said "it would be a lot wose if that surgery were not possible or available".

Pooka1
07-09-2012, 10:28 PM
I second Sharon's nomination of this as Post of the Month. With 3 kids, a husband, a dog, a house to take care of, elderly parents to help out, and a full time job outside the home, including commuting back and forth into the city every day, I'm lucky I have time to shave my legs :-)

Of course, a child/teen might be different, particularly if the regimen was only for a fixed period of time. I'm speaking about adults.

In re adults, did anyone else question how Hawes could have done hours of exercise every day for YEARS and still keep her job? I don't get that. I don't doubt she put in the time doing the PT. Maybe she took a leave of absence or something in there.

As regards the yoga woman, I wonder how much she did to reduce her curve, whether that would have been possible had she NOT been a yoga instructor, and whether she could still maintain that ABSENT her day job of doing yoga.

The SEAS woman was a single case study among many patients who did NOT achieve what she did.

I have mentioned before that I think the reason there are so few people who have reduced their curve is because there is something about the patient plus the PT that worked and not the PT alone (I am talking biology and not determination here.). That would explain why SEAS doesn't have more patients like that one woman and it would explain why Weiss doesn't have the Nobel after 10 years and ~30,000 patients.

For adults who can continue the PT their entire life and avoid surgery, I applaud them. But there is a reason they are not a dime a dozen. Maybe Tom is right that more people could avoid surgery with enough PT. If true then what we have seen to date tends to prove that what is required is MORE than most people can or will do. And that is NOT due to being lazy... a bout of Dengue fever might result in the loses of everything gained over years. Who knows. Who wants to take the chance? Some folks with collagenic syndromes many not be able to exercise enough to hold their curve. They are screwed apparently.

For kids, based on the data in hand about conservative treatments, the surgical cases probably haven't been reduced noticeably. Of course this data is highly flawed. On the other hand, if enough research could be done, it is not crazy to suggest a certain LARGE amount of PT during the growth spurt might keep some kids off the surgery table.

I just think it's interesting that the best estimates for bracing are that maybe about 20% of kids had their curves held sub-surgically, at least until maturity. I think that 20% might match the misidentified JIS cases among the AIS cases. Just a thought.

Pooka1
07-09-2012, 10:47 PM
The idea that the exercise required to reduce a curve is onerous has been disputed and disproven each time it comes up. That that misconception simply cannot be corrected in people's heads says something more about their mindset and something less about the facts currently known about exercise and scoliosis.

The amount of work Hawes did has been published. Denying the published paper exists is irrational. Constantly disproving irrational statements is tiresome.

As to the purported "facts" about PT, if it was only a small amount of effort then everyone would do it and there would be less surgery. But we don't obtain that result. That's because if it doesn't make sense then probably isn't true.

TAMZTOM
07-10-2012, 06:27 AM
The major effort, IMO, is to determine what makes a difference. The time required to exercise is minuscule in comparison. E.g., less time per day than it takes for a kid to make the grade as a swimmer, tennis player, athlete, gymnast...or even to get decent grades at science, maths, English. The required 'mind-shift' takes time to ingrain--postural control is required (IMO) all day, i.e., similar to the postural control hundreds of thousands of ballet kids exert. So, kids would be required to not be as slobby as most of society. Not much of an ask.

Correction can't be achieved overnight and must be maintained. E.g., my daughter does an active self-correction including double side-shift every 8 minutes all day. 30 seconds per correction comes to approx. 40 minutes per day. She improves her aerobic capacity with other stuff, but she'd do that anyway. So far, then, she's just being taught how to be posturally optimal and fit--so, not burdensome. She sits correctively, but that doesn't stop her watching TV, studying or eating.

With organization, the specific training/exercising can be accomplished in 30 - 45 minutes.

mariaf
07-10-2012, 06:34 AM
Maybe Tom is right that more people could avoid surgery with enough PT. If true then what we have seen to date tends to prove that what is required is MORE than most people can or will do. And that is NOT due to being lazy... a bout of Dengue fever might result in the loses of everything gained over years. Who knows. Who wants to take the chance?

I hadn't even thought of that, Sharon. A prolonged illness, or even something like a broken leg, or any number of things could make exercise impossible for weeks/months - what would that do, as you say, to everything gained over the years? Certainly, nobody can say for sure but it's a risk, we just don't know how much of a risk.

Pooka1
07-10-2012, 07:04 AM
...or even to get decent grades at science, maths, English.

Careful here... my kids have at least 4 hours of homework most nights. :-)

TAMZTOM
07-10-2012, 07:08 AM
A prolonged illness, or even something like a broken leg, or any number of things could make exercise impossible for weeks/months - what would that do, as you say, to everything gained over the years? Certainly, nobody can say for sure but it's a risk, we just don't know how much of a risk.
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.)



Posted by Hdugger

* The effort to discover the exercises which actually work is ongoing. Some simple things (torso rotation, side-shifting) seem to work pretty reliably, but a complete exercise regime is either not known by anyone, or not clearly disseminated.
* Some curves simply are not going to change with exercise, particularly curves where some of the bones are already fused.
* The maintenance, although not onerous, is required in order to hold the reduction.
Those points are excellent.

Pooka1
07-10-2012, 07:14 AM
The effort required to maintain a curve reduction is slight, according to most studies. Both SEAS and the torso rotation folk put it at about 15 minutes several times a week.

SEAS can't just KNOW it. They have to SHOW it. Where have they SHOWN it? If you think they have then can you post the papers?

As regards TRS, there are only 35 patients in two studies in the entire world and only some of whom were in the growth spurt. You can't claim a minimum maintenance can be known from that database despite the fact that McIntire's study was exemplary in many regards and was noted as being one of the few studies that were considered objective as I recall. The rest, SEAS, Schroth, etc. were viewed as non-objective and aiming to promote their system. When you look at these studies, you should consider that point and not just repeat their claims robotically.


The effort required to reduce a curve is greater, but for a short period of time (like a month or so for several hours a day), this time according to the SEAS folk.

For one patient out of how many? Why didn't the other patients respond also?


Again, the problem with exercise is *NOT* that it requires too great an effort. If it works, and if you're actually doing the correct exercise, it's a minimal investment. Far less than that required for just general overall health.

You have an "if" in there. So you aren't actually claiming results in reality.

Pooka1
07-10-2012, 07:22 AM
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.)

Well that was my point initially. And you have a good point. But I think it might tend to undermine determination in some folks to stick with a PT program if they thought all their work could be undone in a short period of inactivity.

When my kids got their braces off after wearing them for years (they weren't exactly compliant with the rubber bands and so it took much longer), there were given a retainer. They were told the teeth would go back to their original position pre-brace in about a week if they didn't wear it. That's years of wearing braces being undone in a week. They will (hopefully) wear the retainer the rest of their life (at night).

Now I don't think PT is quite that bad. This came up earlier and I thought my horse starts to lose noticeable condition in about 10-14 days of rest. We had a PT woman agree that for some muscles, that's the right time frame. I think she said others muscles have a different time frame.

TAMZTOM
07-10-2012, 07:24 AM
Careful here... my kids have at least 4 hours of homework most nights. :-)
I like it! My 14 yr old is complaining about 2 hours per night!

Pooka1
07-10-2012, 07:33 AM
http://www.biomedcentral.com/content/pdf/1748-7161-3-20.pdf


B.I. started performing SEAS exercises 30 minutes every day at home, and came to the Center every two months to check and intensify her exercises. In one year B.I. recovered her posture, and according to radiographs, she was even better than at the end of bracing treatment (March 2007, RT 32į, LL 28.5į Ė Figure 6).

So she exercised 30 minutes every day and then had her PT "intensified." What does that mean? Harder exercise or longer workouts? Who is piloting that peer review ship?

It is unclear how much of the year she required to get to the 28*. All they say is the year time frame. If she did it in month or so as has been claimed upthread, I suggest the authors would have put that in the TITLE of the paper, not buried in the methods.

SEAS is very good in having blinded radiograph readers. I believe their numbers unlike, say, the numbers coming out of a certain operation in eastern Canada...

TAMZTOM
07-10-2012, 07:44 AM
But I think it might tend to undermine determination in some folks to stick with a PT program if they thought all their work could be undone in a short period of inactivity.
Unfortunately, that's the deal with many things in life that don't have instant results. 6 weeks out can wreck a runner's entire competitive season, but they do not lose everything. Nor do they give up running because of LIKELY injury. ALL THEIR work will not be undone. E.g., a kid reduces from 40 degrees to 25 degrees, then busts an arm. That kid is still breathing; breathing uses muscles; the scoliotic breathing pattern can be countered while the kid recovers. Isometric tension during activities of daily living, i.e., working the stabilising muscles, can be performed even with a bust bone or two. ... The point is that things can be done.


That's years of wearing braces being undone in a week. They will (hopefully) wear the retainer the rest of their life (at night).
Now that analogy should open a few minds. Just as your kids adapt, wear their retainers, others adapt, see maintenance exercise as just a part of life.


Now I don't think PT is quite that bad. This came up earlier and I thought my horse starts to lose noticeable condition in about 10-14 days of rest. We had a PT woman agree that for some muscles, that's the right time frame. I think she said others muscles have a different time frame.
I treat my older daughter like a horse. :-) Even after her one day a week off, she is visibly more sluggish. Her HR is typically up by 3 - 5 bpm at the same speed and distance as before the day off. To let the body adapt to the training, the day off is required--we don't get fit during training, we get fit when resting after training. Two weeks off like your horse knocks her for six. She takes 3 weeks off after the summer track season ends. It typically takes her the same time to fully recoup her previous fitness (rule of thumb = weeks off = # of weeks to recover fitness).

TAMZTOM
07-10-2012, 09:05 AM
So she exercised 30 minutes every day and then had her PT "intensified." What does that mean? Harder exercise or longer workouts?
The paper describes the weakness in major muscle groups; with increases in strength, "intensification" here would entail increased reps to improve endurance (Type 1 fibers) and possibly increased weight or resistance to increase strength sufficiently to stabilise the body, which had posturally collapsed.

The salient point is that the patient corrected....as an adult...and avoided surgery.


SEAS is very good in having blinded radiograph readers. I believe their numbers unlike, say, the numbers coming out of a certain operation in eastern Canada...
What numbers are these? SpineCor stuff? Do you have links?

TAMZTOM
07-10-2012, 09:34 AM
I never understood the "but what if I lose it all" question. I think it goes back to the mistaken notion that achieving/maintaining the reduction is onerous
I've talked to people who attended the SOSORT 2012 conference in Milan. There was much discussion of how "less is better", i.e., exercise isn't time consuming. The publication will make interesting reading.

Pooka1
07-10-2012, 09:58 AM
No one but no one wants to go through surgery again, but a very large percentage do.

Citation? This sounds obviously false as are many of your other statements.

Pooka1
07-10-2012, 10:04 AM
The paper describes the weakness in major muscle groups; with increases in strength, "intensification" here would entail increased reps to improve endurance (Type 1 fibers) and possibly increased weight or resistance to increase strength sufficiently to stabilise the body, which had posturally collapsed.

The salient point is that the patient corrected....as an adult...and avoided surgery.

We were discussing amount of exercise. They don't specify how much she had to do every day for most of a year to achieve the reduction. It could have been ramped up to 2, 3, or more hours a day and only then did she start to reduce the curve. Hawes did even more than that every day for several years. If it takes more time than people have then it isn't going to help folks.


What numbers are these? SpineCor stuff? Do you have links?

Yes. We have surgeons claiming the Montreal publications are widely disregarded and we have at least two cases on the group where they were obviously wrong, one checked over by another surgeon. There is a reason why most surgeons in the US will use other braces but not Spinecor. It is no coincidence.

TAMZTOM
07-10-2012, 11:42 AM
We were discussing amount of exercise. They don't specify how much she had to do every day for most of a year to achieve the reduction. It could have been ramped up to 2, 3, or more hours a day and only then did she start to reduce the curve. Hawes did even more than that every day for several years. If it takes more time than people have then it isn't going to help folks.
You asked what could "intensity" mean. It could not have been ramped up 2,3 or more hours a day--the subject was not capable of doing that, trained athletes would have difficulty. This is obvious. Hawes did a lot of stuff for her respiratory ailments and then discovered how to reduce her curve. Hyping up exercise in the above fashion will dissuade some parents with kids who could avoid surgery not to even try. A degree of responsibility is required in these posts.


Yes. We have surgeons claiming the Montreal publications are widely disregarded and we have at least two cases on the group where they were obviously wrong, one checked over by another surgeon. There is a reason why most surgeons in the US will use other braces but not Spinecor. It is no coincidence.
No one really cares if some random surgeon dudes claim this or that. To paraphrase Hawes, "Who cares what...[random dudes]...claim if they have no evidence to back it up." Sharon, are you citing anecdotal evidence from NSF posters? (Bit of tongue in cheek.) The US surgeons are behind even the UK surgeons in their knowledge of non-invasive methods, so that puts them somewhere in the 18th century.
I am aware of four cases of NSF posters for whom the SpineCor didn't work: three of those didn't comply with the protocol (braces not worn, repeated intensive ballet days--6 hours--out of brace, no consistent exercise); in Tamzin's case, the brace compressed her spine, loaded the curves, basically sucked big time. I'm also aware, from NSF, of several cases where kids wearing SpineCor did not progress or significantly improved. This proves nothing either way. I thought you were referring to recent SpineCor study results--they have another 10 year study coming out NOW.

Alistair
07-10-2012, 12:38 PM
they have another 10 year study coming out NOW.

I'm sooo tired of these 'studies', I live 40kms from ISICO HQ and despite all their studies they can't do anything for me. If you know some Italian and go through their blog you'll read stuff like "what we know is still a fraction of what we don't know", what does that tell me? If I want to do something for my back I have to look myself what's good for me, there might exercises out there which might be helpful who knows.. in their blog I've read of a patient around my age using Gyrotonic, there's only a mini-trial about it so if anyone has used it or knows anyone who has pls PM.

TAMZTOM
07-10-2012, 01:14 PM
The time required in initial exercises by Hawes and Miller is likely to be 99% research and 1% exercising. They're trying things out, trying to figure out what works.
This is our experience exactly. And unlike Hawes, I had to learn a few languages to even understand the stuff.


It's not rocket science, folks. These people are doing research and communicating their results, there's no reason to guess.
It would be hugely beneficial for newcomers, perhaps with kids just diagnosed and wanting to try the exercise way, to be directed towards stuff like Hawes, Mehta and Seas.

SEAS:
There are just a few days onsite, and the rest of the program is completed at home, 30 minutes for three days a week.
ADLs and ASCs in addition, but that's just a matter of, put simplistically, having better and corrective posture.


Again, the problem with exercise is not that it's too hard. It's that the correct exercises are not widely known, some curves don't reduce, and the exercise has to be continued.
To the point.

Pooka1
07-10-2012, 01:41 PM
You asked what could "intensity" mean. It could not have been ramped up 2,3 or more hours a day--the subject was not capable of doing that, trained athletes would have difficulty. This is obvious.

Tom! I don't know what "intensity" means and neither will most other patients and parents reading this! Because these authors CHOSE to be cryptic and because the peer reviewers let them get by with it, THEY are responsible if people starting making wild guessing about what "intensity" mean, yes?

Pooka1
07-10-2012, 01:47 PM
If you know some Italian and go through their blog you'll read stuff like "what we know is still a fraction of what we don't know", what does that tell me?

Well that tells me they are pretty good and honest researchers. That, plus the blind radiograph reading puts them out ahead of other groups unless the other groups do the same. They really seem to care about trying to get a real answer in my opinion.

The other thing is they apparently have determined that the one case report cannot be replicated (for whatever reason). That would have constituted knowing something about PT and how it reduces adult curves if they could apply it widely. So maybe there is something unique about that one patient.

TAMZTOM
07-10-2012, 01:59 PM
Tom! I don't know what "intensity" means and neither will most other patients and parents ready this! Because these authors CHOSE to be cryptic and because the peer reviewers let them get by with it, THEY are responsible if people starting making wild guessing about what "intensity" mean, yes?

"intensity" is ambiguous, not ambivalent in this case. For lay-folk, this could be explained..and I have no doubt that the "intensity" increase would be spelled out when SEAS folk are instructing patients. The targeted audience for that paper--and most others--does not include lay-folk. The targeted audience will know what the researchers meant by "intensity". (E.g., it is commonplace in running physiology to refer to 'increases in intensity rather than mileage'.)

It is the same in surgical papers--the authors are not trying to educate the lay public, they are describing procedures to other practitioners conversant with the chosen technical lingo.

TAMZTOM
07-10-2012, 02:05 PM
The other thing is they apparently have determined that the one case report cannot be replicated (for whatever reason). That would have constituted knowing something about PT and how it reduces adult curves if they could apply it widely. So maybe there is something unique about that one patient.

I didn't get that from the paper at all, Sharon! The opposite.


Conclusion
This case report shows it is possible obtaining a significant
improvement of scoliosis in adults with SEAS exercises.
Marty-Poumarat showed that rate of progression in adult
scoliosis is linear [6]. So, it is possible to establish an individual
prognosis repeating x-rays every 4Ė5 years in adulthood.
When x-rays detect a significant worsening, it is
possible to recover and then to possibly stabilize scoliosis
through SEAS exercises, thus avoiding the need of surgery.

Did I miss something? Limited time here (I'm on multiple kid training duty now...). Can you direct me to whatever you read that suggested this was an odd case?

Pooka1
07-10-2012, 02:05 PM
"intensity" is ambiguous, not ambivalent in this case. For lay-folk, this could be explained..and I have no doubt that the "intensity" increase would be spelled out when SEAS folk are instructing patients. The targeted audience for that paper--and most others--does not include lay-folk. The targeted audience will know what the researchers meant by "intensity". (E.g., it is commonplace in running physiology to refer to 'increases in intensity rather than mileage'.)

It is the same in surgical papers--the authors are not trying to educate the lay public, they are describing procedures to other practitioners conversant with the chosen technical lingo.

Yes I see that but it is arguable that the ONE point that a lay person or a researcher would most want to know from that case study is what EXACTLY did the patient do to accomplish such a reduction??? Why did they leave out the most important detail??? If I was a patient and saw that reduction I would try to do EXACTLY what she did. But I can't because they were cryptic. And other researcher can't even hope to replicate the study because they were cryptic.

Pooka1
07-10-2012, 02:10 PM
Did I miss something? Limited time here (I'm on multiple kid training duty now...). Can you direct me to whatever you read that suggested this was an odd case?

I am merely opining that they had a real accomplishment with that one woman. If they saw that result more widely then they would have robust and reliable PT solution to reducing adult curves. Yet according to Alistair, they claim they barely know anything. That is inconsistent in my opinion. Only if they don't know why she was the only person to respond like that could they conclude they barely know anything in my opinion.

TAMZTOM
07-10-2012, 02:14 PM
Yes I see that but it is arguable that the ONE point that a lay person or a researcher would most want to know from that case study is what EXACTLY did the patient do to accomplish such a reduction??? Why did they leave out the most important detail??? If I was a patient and saw that reduction I would try to do EXACTLY what she did. But I can't because they were cryptic. And other researcher can't even hope to replicate the study because they were cryptic.

It would be awesome for me if the exercise research spelled out everything. E.g., I had to ask Kevin McI for his precise home based protocol because it wasn't in the widely available paper. McI wasn't being cryptic. Neither are the authors of that SEAS paper. The bottom line, as you've said often, is that most folks with other professions simply don't have the time to grapple with the language of another profession.

If I were being sceptical--as I often am--I could suggest a proprietary obfuscation motivated their wording. That would be a stretch in this case. Even ignorant I know fairly accurately what they mean by "intensity".

TAMZTOM
07-10-2012, 02:17 PM
I am merely opining that they had a real accomplishment with that one woman. If they saw that result more widely then they would have robust and reliable PT solution to reducing adult curves.
Yes! I think Hdugger made a similar excellent point earlier...to translate to Scottish, dissemination of good ideas sucks.


Yet according to Alistair, they claim they barely know anything. That is inconsistent in my opinion. Only if they don't know why she was the only person to respond like that could they conclude they barely know anything in my opinion.
I don't read posts from surly trolls, so haven't read anything from that one. :-)

Pooka1
07-10-2012, 02:22 PM
It would be awesome for me if the exercise research spelled out everything.

Hawes tabled everything she did, when she did it, and the duration of each activity. It was exquisite in its detail. That SEAS case study could have done the same. If they were protecting proprietary info, and we have no evidence of that, then that would reduce my very high opinion of them as researchers.

Alistair
07-11-2012, 05:28 AM
I don't read posts from surly trolls, so haven't read anything from that one. :-)

"sono molte di piý le cose che non sappiamo di quelle che sappiamo"
Stefano Negrini, medical director at ISICO (the SEAS people as you call them), 21/05/2010

I don't know any surly trolls, and I'm certainly not one. Why don't get hold of a vocabulary and translate that tamztom.

This forum has become a discussion between the ever optimistic tamztom and the more realistic pooka1 (I believe I've found myself agreeing a lot more with the latter than the former in past discussions), I would like to see more people participating..

jrnyc
07-11-2012, 06:10 AM
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"

Alistair, i agree with you....the scoli i live with presents me with little optimism at the moment...
reality doesn't mean the same to everyone...depending on who is doing the looking...

jess

Pooka1
07-11-2012, 08:35 AM
"sono molte di piý le cose che non sappiamo di quelle che sappiamo"
Stefano Negrini, medical director at ISICO (the SEAS people as you call them), 21/05/2010

It is very good of them to admit their ignorance.


"True knowledge exists in knowing that you know nothing." -- Socrates


"The first principle is that you must not fool yourself, and you are the easiest person to fool." -- Richard Feynman

For me in my research career, the more I knew (or thought I knew), the more I realized how much I didn't know. It is easy to be convinced of something that turns out to be wrong. The problem can expand faster than the gain in knowledge. Idiopathic scoliosis fits this paradigm in my opinion. The more they know, the bigger the problem might appear.

Skepticism is not negativism. It is simply the best way to hopefully avoid going down the wrong path. You can learn from your mistakes but even better is to see the impending mistake before it is committed. That is as educational as making the mistake which is also educational. There is more snake oil in alternative treatments for scoliosis than you can shake a stick at. That situation can only arise when medicine has yet to crack the nut.

It is not crazy to try safe things including conservative (as opposed to alternative) treatments when the clock is ticking. But definitive statements are not appropriate in what is essentially a series of science experiments being conducted with bracing and PT. These are experimental treatments and should be discussed as such in my opinion. They differ from, let's say insulin therapy for diabetes wherein they are not still researching if insulin shots can treat that condition. Research continues because efficacy has not been shown definitively. These are clearly experimental treatments and it is misleading to talk about them in other ways. I think the ISICO researchers seem to agree with that to their great credit. They certainly appear to be approaching this is a very correct way.

My personal opinion is that eventually a class of patients will be identified who can predictably avoid surgery through either bracing or PT during the growth spurt. I think it will be massively dominated by the JIS cases and have much fewer AIS cases. And I do think a few adults have avoided surgery through unremitting PT for life. I am just not sure these treatments will ever totally avoid surgery for all kids or adults for many, many reasons variously discussed in these threads.

That's one layperson's unlettered opinion. :-)

jrnyc
07-11-2012, 09:44 AM
adults avoiding surgery using exercise to feel better....yes...
adults avoiding surgery using exercise to reduce curve(s) or to prevent
progression of curve(s)...no
that is just my opinion...

and...what of the unknowns...the old "correlation doesn't prove cause" thing....?
how to PROVE which people, young or old, would not have had curves progess anyway, regardless
of exercise....?

jess

jrnyc
07-11-2012, 10:43 AM
could you please refer me to the proof for these adult patients...??
somewhere i could read the numbers of people who have succeeded
with this "cure" that Tamz writes of...?
i have only read of one or two patients...not thousands of any patients,
not large numbers of any patients, certainly not large numbers
of adults...and i have never read of large numbers, thousands, of
kids...but i would be willing to do the reading if i knew where to locate
the studies...
if the studies are not available to lay people...if they are published only
in medical journals, i could ask the surgeon i will be seeing soon if he would
let me read them in the medical journals he gets at his office...

thanks....

jess

TAMZTOM
07-11-2012, 10:52 AM
Since we're looking at "experiments", choices and facts, I've pasted the below from Martha Hawes.


Impact of Spine Surgery on Signs and Symptoms of Spinal Deformity
Pediatr Rehabil. 2006 Oct-Dec;9(4):318-39
Hawes, M.
University of Arizona, Tucson, AZ 85721, USA.
“Pediatric scoliosis is associated with signs and symptoms including reduced pulmonary function, increased pain and impaired quality of life, all of which worsen during adulthood, even then the curvature remains stable. Spinal fusion has been used as a treatment for nearly 100 years. In 1941, the American Orthopedic Association reported that for 70% of patients treated surgically, outcome was fair or poor: an average 65% curvature correction was reduced to 27% at greater than two year follow-up and the torso deformity was unchanged or worse. Outcome was worse in children treated surgically before age 10, despite earlier intervention. Today, a reduced magnitude of curvature obtained by spinal fusion in adolescence can be maintained for decades. However, successful surgery still does not eliminate spinal curvature and it introduces irreversible complications whose long-term impact is poorly understood. For most patients there is little or no improvement in pulmonary function. Some report improved pain after surgery, some report no improvement, and some report increased pain. The rib deformity is eliminated only by rib resection, which can dramatically reduce respiratory function even in healthy adolescents. Outcome for pulmonary function and deformity is worse for patients treated surgically before the age of 10 years, despite earlier intervention. Research to develop effective non-surgical methods to prevent progression of mild, reversible spinal curvatures into complex, irreversible deformities, is long overdue.”

Surgery seems to have improved, but not well enough. More must be done for those who choose surgery and for those who have no realistic choice. Bracing MAY be better for many who do not have the opportunity and support to optimise the use of exercise, but, like surgery, bracing can have dramatically adverse consequences. Exercise treatment can clearly work for some, JIS, AIS, kids, adults, teens, girls, boys. It does not work for all and this is large part due to ignorance, lack of communication and dissemination.

Even in our short experience, we've been exposed to negligent surgeon advice, orthotist advice, physical therapist advice. Our experience is common--in fact, it is the norm. There is merit in all of these treatments and they are all also flawed. If one parent decides surgery is the best option, this forum should afford sensible discussion of experience and current knowledge. The same goes for bracing and exercise. All else is a puerile waste of time. Some folk need to get over themselves, grow up a bit and start helping.

My kid will exercise to treat her scoliosis. It has taken us a year to develop some measure of insight. We have not totally discounted the use of a brace, but are loathe to try it again. Increased curve flexibility may, for example, enable a SpineCor brace to effect a greater correction, possibly avoid disk wedging, but we'd have to weigh that against e.g., detrimental compression, scapula winging, rib compression, pulmonary restriction, relative lack of neuromuscular integration. Surgery COULD become necessary so I will continue to read, learn from others with experience of all three fields. We proceed not on myth, accepted 'wisdom' or hope, but on what we see is working and expect to continue to work.

Pooka1
07-11-2012, 11:36 AM
adults avoiding surgery using exercise to feel better....yes...
adults avoiding surgery using exercise to reduce curve(s) or to prevent
progression of curve(s)...no
that is just my opinion...

and...what of the unknowns...the old "correlation doesn't prove cause" thing....?
how to PROVE which people, young or old, would not have had curves progess anyway, regardless
of exercise....?

jess

Hey Jess,

While there are curves that reach high angles and then just hang there, sometimes for years, most don't and continue to progress. So while you are right about not being able to know if PT holds smaller curves, it is probably the case that it is holding larger curves that stop progressing after demonstrated recent progression or reduce. Those things don't happen some much in the natural history so it is likely the PT that is doing that.

But of all the adults who try this, we only know of a literal handful who have sigificant reductions. Presumably more have smaller reductions and even more have halted progression during the PT. What we don't know is the failure rate... it could be that only a small precentage who try to use PT to hold or reduce their curve are ever succesful. It would be helpful if somehow someone tried to estimate how many people successfully avoided surgery with unrelentling PT.

Kids using PT during the growth spurt is a different matter. That seems like a more open question than the adult situation.

ETA: The main difference between kids and adults when it comes to PT is that targeted work during the growth spurt might be shown to keep kids subsurgical for life. At least that is my understanding of the research on PT and kids. They can then quit the PT if they like after the growth spurt. The situation for adults is they are looking at PT for life if it works. That's a whole 'nother ball game and a far larger total commmitment.

Sharon

TAMZTOM
07-11-2012, 03:29 PM
I saw the actress Rebecca Romijn on a talk show a couple of years ago and she said she had had scoliosis since she was a teen. But since taking up Pilates, it has disappeared. Her words were (I'm paraphrasing): Pilates straightened my spine right up! Does anyone believe this could have been possible?

On the Pilates front, my daughter recently started doing right-side planks. She's done several private Pilates classes and many group sessions before ballet, but never side-planks. The exercise corrects the comp. lumbar curve as she prepares; she rises from the floor using her right side, tighter oblique and quadratus muscles. The thoraclumbar fascia snaps into alignment, this in turn aligning all the interweaving muscles and pull on the lumbar spine transverse processes. When in full plank, the lumbar curve is gone completely, the thoracic curve almost completely straight too. She does them in sets, 8 x 10 - 15 seconds. She is becoming very adept at holding some of the corrected alignment after finishing this and all other exercises. After some practice, she can now derotate the thorax a/c and lumbar spine c/w during the exercise.
If side-planks are considered Pilates, we're in!

jrnyc
07-11-2012, 03:36 PM
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
07-11-2012, 03:47 PM
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
07-11-2012, 05:24 PM
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
07-11-2012, 06:24 PM
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
07-11-2012, 07:10 PM
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
07-11-2012, 08:05 PM
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
07-11-2012, 08:22 PM
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
07-11-2012, 08:33 PM
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
07-11-2012, 08:41 PM
Linda,

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

Sharon

rohrer01
07-11-2012, 09:57 PM
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
07-11-2012, 10:13 PM
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
07-12-2012, 08:26 AM
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
07-12-2012, 08:33 AM
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
07-12-2012, 01:08 PM
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