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Jinseeker
01-08-2014, 06:55 AM
Dealing with scoliosis, is probably the most confusing aspect of my life on what to do with it when your scoliosis curve is at the grey area of 46-52 degrees(see my xray below my post). I just don't know what to do and fear the worst that it may progress in the future. Perhaps I keep thinking to myself, surgery may be better for me, but then again it may very well end up worse or just the same, considering the fact that i love my job and often work 12 hours a day sitting at an office desk/chair. Crunch times are also pretty common in the place I work in.

Recently I stumbled upon this site http://www.idiopathicscoliosis.com/bracing-in-adults
which claims to halt progression and minimize pain in scoliotic adults. I have a structural idiopathic curve and was wondering what you people think about this treatment. I know and have read interviews and articles in NSF that bracing does not do anything when it comes to halting progression nor does exercise, but it is better to at least do something about it than end up in regret later on for having not take any action at all if the scoliosis worsens. And if it does, then what do I do? Go through surgery, or just live with it hoping that when I get older It wouldn't be that bad since progression is slow and perhaps I just live with the pain?

I guess this may be my only option. I am already constantly self conscious about my posture, and do everything to counteract my scoliotic curve by counter posturing myself to prevent from leaning into my natural scoliosis state. I have 3 curves and do schroth isolation exercises for each curve, bending my spine opposite the direction of the scoliosis. Sleep with 3 pillows to bend the spine opposite the curvatures, sit in my office with a cushion underneath my right buttock for the lumbar curve, and a shoulder weight on my left shoulder for my cervical curve, while I purposely shift my trunk leftwards so that it is more centered with my pelvis.

People think i am overacting when they see me and sometimes i question myself is any of what i am really doing working at all, or am i just needlessly anxious about it. Whichever the case, the confusion and ambiguity never leaves me.

1558

leahdragonfly
01-08-2014, 08:43 AM
Hi Jin,

the adult SpineCor brace is intended for pain relief. Here is a blurb about it:

<snip>A new and innovative approach to spinal treatment in adults targets pain relief by providing postural rehabilitation and spinal offloading.

Adults with Scoliosis are now being successfully treated with the SpineCor Dynamic Scoliosis Brace. The goal of treatment in not to correct the adult scoliosis, as that is not possible with a brace, but rather to help support the spine and alleviate pain.

The new SpineCor Pain Relief Back Brace is a neuro-muscular-skeletal rehabilitation tool for treating abnormal spinal loading and abnormal posture; it is not a simple back support brace.<snip>

Possibly something to try if you suffer pain, but otherwise it will not prevent progression.

Good luck,

Jinseeker
01-08-2014, 09:07 AM
Thanks for your reply.
However, if you look in the site I linked, they also say their goal is to halt progression with the spinecor brace.

Pooka1
01-08-2014, 09:09 AM
Do you have pain now? Is there documented recent progression?

From reading testimonials, I think most surgeons would be reluctant to fuse you if you don't have uncontrollable pain and/or recent progression. If you stayed that way the rest of your life with no progression, is that acceptable to you? You might not progress.

One exception might be Dr. Hey if he thought waiting would result in a longer fusion. That's what I understand from his blog.

Maybe get some more opinions including one from Dr. Hey. I would ask these guys how likely it i that the fusion would extend further into your lumbar if you wait and it progresses. If thoracic fusion is likely to straighten the lumbar enough then you might never need your lumbar fused. You might never need it fused if you do nothing also. All you can do is get opinions. They will likely differ, unfortunately.

Good luck.

Pooka1
01-08-2014, 09:14 AM
Thanks for your reply.
However, if you look in the site I linked, they also say their goal is to halt progression with the spinecor brace.

Even if it did halt progression, you only wear it two years, yes? You would continue progressing when you take it off and perhaps at a faster rate since you won't have any muscle tone from being supported for two years in a brace.

hdugger
01-08-2014, 10:59 AM
I don't think you're overreacting. Unfortunately, there just hasn't been a ton of interest in the research for adults with scoliosis - almost everything is focussed on kids. That makes it a lot harder to know what to suggest to an adult who wants to avoid future back problems.

There's a group in Italy (ISICO, based in Milan) with an orthopedic surgeon who has been doing a great deal of research into the effects of exercise and bracing on scoliosis. There are a fair amount of snake oil salesmen in the exercise realm, unfortunately, but nothing I've seen about this center suggest to me that they're anything other than honest researchers looking into a treatment.

Most of their work involves children, but he has recently been discussing the role of exercise in adults. Here's what he says about the topic

"In the literature, we find a growing number of data confirming that possibility that exercise alone can, in some cases, slow down the developments of the scoliotic curve, not only in the child but also in the adult.The reduction of the scoliotic curve certainly does not indicate a reduction of deformity but a recovery of the postural collapse, which is present in upright posture."

Unless you're in Italy anyway, I'm not recommending a visit to their clinic. But I did want you to know that researchers in this field are looking into the role of exercise in slowing the progression of the disorder in adults. Dr. Mehta (a doctor and patient in the realm of scoliosis) also uses exercise in adulthood for herself.

Here's a link to the paper from the ISICO clinic - http://en.isico.it/isico/pdf/approach/text.pdf. What he and other people in this field talk about is active correction - that is, becoming aware all of the time of how your body is positioned - so that correcting it becomes a kind of second sense. He (and others) feel that this keeps the body from collapsing into the curve and thus making the curve grow larger.

For specific exercise, the paper touches on a few notions about self correction. Dr. Mehta talks about doing side shift (you can google for the article on this site), but this is still a young area of published research, so there aren't a ton of great pointers. I just wanted to let you know that there are people looking into the role of exercise in slowing the curve progression for adults.

I have not seen much interest, even in this group in Italy, about the role of bracing in adults. I suspect that's because there's no real end point to bracing in an adult, and no one really wants to prescribe a brace for life. That's no to say that there won't be reseearch in the future showing a role for bracing in adults, but there's nothing at the moment which would support it as a treatment for adults.

Jinseeker
01-08-2014, 11:21 AM
Even if it did halt progression, you only wear it two years, yes? You would continue progressing when you take it off and perhaps at a faster rate since you won't have any muscle tone from being supported for two years in a brace.

Really? only 2 years. But take note this is the spinecor brace not the traditional braces. This one actually supports the muscles only making them stronger instead of atrophying it.

As for me, there has been no documented progression, and my pain has been tolerable with exercise alone. My worries are if it would worsen and i am at a point where exercise can no longer ease pain when I get even older. Perhaps doing fusion now while I am still young would be better, but i am curious as to how many adults here have kept from going through with surgery from a successful attempt to halt their curvatures with a brace like spinecor.

Thanks for your input.

hdugger
01-08-2014, 11:23 AM
Thanks for your reply.
However, if you look in the site I linked, they also say their goal is to halt progression with the spinecor brace.

Yes, I see what you're referring to on the site. A few things about the statement (brace stops progression in adults):

* He doesn't say what he's basing that on, and I have not yet seen any research on this topic. I'll give it a look today and see if there's something new. I can also try writing to the ISICO group to see what they think - they've been helpful in the past.
* The one example he posts (of a reduction in curve) is unclear (to me). It sounds like it's someone who developed scoliosis as an adult, which is not really the same thing as people who had curves as kids. Also, he doesn't say whether the decrease in the curve is in or out of brace. Braces, while they're worn, do decrease the curve. But, as soon as you take them off, the curve goes back to normal. So, he'd have to be clearer about whether this patient saw a reduction in her curve *after she'd been out of brace for at least 48 hours*. You'd also want to know how she fared two to five years down the road.

Again, I don't have any evidence that is *doesn't* work - I'd just be very careful, in this case, about claims that don't seem to be supported by the literature. How Gayle summarized the Spinecor literature is also my understanding of it - there is some support for the idea that the brace addresses the pain, but no claim beyond that.

hdugger
01-08-2014, 11:26 AM
As for me, there has been no documented progression, .

Ah, i'd missed your tagline before I posted - it looks like you're already doing exercise, and it also looks as if (maybe because of that and maybe not) you're also not seeing progression.

I'd say that whatever you're doing looks like it's working for you. I'll dig into the research about spinecor and adults and see what I can find.

Pooka1
01-08-2014, 11:44 AM
Really? only 2 years. But take note this is the spinecor brace not the traditional braces. This one actually supports the muscles only making them stronger instead of atrophying it.

I am talking about the Spinecor brace. We had a woman on the forum. That was the protocol although I don't think she wore it for to years. It did help with her pain. There are other testimonials in a Canadian popular magazine (i.e., anecdote) where it helped adults with pain. I believe it helps adults with pain. I just don't know what they do after two years.


As for me, there has been no documented progression, and my pain has been tolerable with exercise alone. My worries are if it would worsen and i am at a point where exercise can no longer ease pain when I get even older. Perhaps doing fusion now while I am still young would be better, but i am curious as to how many adults here have kept from going through with surgery from a successful attempt to halt their curvatures with a brace like spinecor.

Thanks for your input.

You may never progress! You may be able to control the pain with PT the rest of your life! I can understand why surgeons would not want to fuse you. I think they take people for whom conservative methods are not controlling pain. The one exception out there might be Dr. Hey who seems concerned with doing shorter/earlier fusions versus longer/later fusions. I can see that concern if it means losing levels in the lumbar.

If you worsen, you can cross that bridge at that time.

While Spinecor may have a goal to halt progression, they need to SHOW that brace wear for two years can halt progression. And then they need to address what happens AFTER the two years when your muscles are atrophied.

Jinseeker
01-08-2014, 11:48 AM
@hdugger:

You are right on where I am coming from. It just makes more sense to me that by knowing how your scoliosis curves, you can somehow self correct it to some extent by being mindful of it all the time until it becomes second nature. That is at least my goal, whether or not it doesn't work, at least i've know i tried everything i could to address the issue.

My curve is structural, but somehow it may not be 100%, since when I bend my torso to my right, my curve actually gets less, when i bend to my left, it gets worse. This was proven through bending x-rays. My lumbar hump also seems to disappear when I arch my lower back forwards compared to when i am standing completely straight. Does that mean that my curve may still be partially non-structural?

Hopefully you can update me with the progress of this italian clinic, and do hope that one day, the role of exercise and bracing becomes more mainstreamed even for adults with severe scoliosis. Spinal fusion is not neccessarily the best way to always go. I couldn't imagine how I'd be able to work sitting on chair for 12 hrs a day had my spine been fused, when in fact the saving grace from pain for me all these years was the ability to twist and bend to address the muscle imbalances of my back.

I have heard of Dr. Min Mehta, and i am currently trying to find her contact information. I've scouted the web and i still haven't found it. I think her research on side-shifting is great, and if it works on kids to not just halt their progression but correct their curves, at least you'd think maybe it would work on stopping progression on an adult as well.

Pooka1
01-08-2014, 12:01 PM
My curve is structural, but somehow it may not be 100%, since when I bend my torso to my right, my curve actually gets less, when i bend to my left, it gets worse. This was proven through bending x-rays. My lumbar hump also seems to disappear when I arch my lower back forwards compared to when i am standing completely straight. Does that mean that my curve may still be partially non-structural?

All but probably the stiffest structural curves bend out some. I think my daughters could bend out their structural curves that were in the fifties to the thirties. But they could bend out their compensatory curves almost completely. So it's the amount or percentage you can bend them out, not THAT they can be bent out, that determines structural versus compensatory as far as I know.

Hope this helps.

hdugger
01-08-2014, 12:16 PM
You are right on where I am coming from. It just makes more sense to me that by knowing how your scoliosis curves, you can somehow self correct it to some extent by being mindful of it all the time until it becomes second nature. That is at least my goal, whether or not it doesn't work, at least i've know i tried everything i could to address the issue. .

That makes complete sense to me, and I hope you'll keep us updated on your (hopefully!) lack of progression. My son, who is a few years younger then you, also has a stable curve and exercises. It's less clear that that's the cause of the lack of progression, in his case, because he has a type of scoliosis which tends to progress less in adulthood. It *is* clear, however, that he looks much, much straighter and balanced since he started exercising. Like you, he is just mindful of his position at all times - it's second nature for him.

Dr. Mehta, unfortunately, is retired. Tonibunny, over in the Scoliosis Support forum in the UK, met with her recently, but I suspect she is not still responding to emails. However, there is a PT clinic in the hospital where she used to work run by Tony Betts, and he has a good deal of knowledge (and is publishing reports) in this area. You might try to reach out to him - since he worked with Dr. Mehta and, likely, has the greatest depth of knowledge in side-shift of anyone practicing in this area.

As Pooka pointed out, we have only had one adult patient on this forum using the Spinecor, so our knowledge is not very deep on this topic. Here is that same posters discussion about her experience, over on the Scoliosis Support forums - http://www.scoliosis-support.org/showthread.php?t=8948.

Best of luck, and do let us know how everything turns out.

Pooka1
01-08-2014, 12:36 PM
All but probably the stiffest structural curves bend out some. I think my daughters could bend out their structural curves that were in the fifties to the thirties. But they could bend out their compensatory curves almost completely. So it's the amount or percentage you can bend them out, not THAT they can be bent out, that determines structural versus compensatory as far as I know.

Hope this helps.

I mis-remembered this and was partly right and partly wrong... here are what the curves bent out to just prior to surgery... it is my understanding they do this to help select fusion levels:

Kid #1: Thoracic: 55* -> 23* = structural
Lumbar: 34* -> 8* = compensatory

Kid #2: Thoracic: 54* -> 38* = structural
Lumbar: 38* -> 4* = compensatory

Hope this helps.

Jinseeker
01-08-2014, 12:58 PM
My son, who is a few years younger then you, also has a stable curve and exercises. It's less clear that that's the cause of the lack of progression, in his case, because he has a type of scoliosis which tends to progress less in adulthood.


Never heard of a scoliosis curve that tends to progress less in adulthood? would that be a curve less than 40 degrees?

hdugger
01-08-2014, 01:21 PM
Never heard of a scoliosis curve that tends to progress less in adulthood? would that be a curve less than 40 degrees?

He has congenital (from some point in fetal development, although he had no symptoms until he was a teen), and he is self-fused at the apex (along with have a wedged vertebrae or two). What I've heard is that these congenital kids advance much faster when they're young and much slower when they're older. That makes no sense to me, but that's what I've heard/read.

On the postural component, there should be something about that in the paper I cited. The ISICO team hypotheses that a curve has three components: structural (bone), ligaments, and muscles. You measure them as follows:

Standing curve minus curve when lying down = muscular component
Curve when lying down minus curve lying down and braced = ligament component
Curve lying down and braced (taken by itself) = structural component

So, what they say is, you cannot effect the structural (bony) component, but you *can* affect the muscular and, to a lesser extent, the ligament component. That's what they're trying to do with these adult curves - get your standing curve to *just* be bone (or bone plus ligament - I can't recall which), and erase the way the muscle sort of exacerbates the curve.

Again, this stuff is all a little beyond me. The paper describes is much more clearly.

flerc
01-08-2014, 02:12 PM
Even if it did halt progression, you only wear it two years, yes? You would continue progressing when you take it off and perhaps at a faster rate since you won't have any muscle tone from being supported for two years in a brace.

how do you know that?

hdugger
01-08-2014, 02:27 PM
how do you know that?

As best I can tell from what I've read, there's no evidence supporting the first statement ("you would continue to progress"). It's certainly possible to conjecture that this might happen, but I see no evidence that it's been shown to happen. So, maybe that should read "I could imagine that you might progress," in order to make it clearer that's it's one of many possible outcomes which one could conjecture.

However, the further conjecture ("you might progress faster . . . muscle tone") is based on something which I do not believe to be the case, according to anything I've read. According to the design, Spinecor is specifically designed to avoid the muscle atrophy sometimes seen in hard braces. So, there's no reason to imagine that wearing one would increase the (normal) rate of progression, since there is not expected to be muscle atrophy with the Spinecor brace. That statement would only apply to a hard brace.

Again, any of this might turn out to be true, I don't want to suggest that it *can't* happen, I just want to clarify that there's no evidence to suggest that continued/increased progression is the known outcome from bracing in adults. Simply, the research is completely not in.

flerc
01-08-2014, 03:22 PM
Right Hdugger. If this forum would be moderated in a serious way, it would be forbidden to do that kind of categorical claims, without enough (null in this case) justifications.

hdugger
01-08-2014, 03:39 PM
Right Hdugger. If this forum would be moderated in a serious way.

I don't think NSF has the kind of funding which allows them to even look at every post, much less correct these kinds of things. That's why I think it's helpful to have people with experience in different areas who can contribute what that know. In another thread I realized that something I'd thought was true about jis was not true. Without having parents here with experience in those areas, I would have gone on assuming things which weren't correct.

That's why I've talked so much about the hit we took when most of the people pursuing exercise left this forum for a private forum. That took all that knowledge with them. That's very unfortunate, IMO.

flerc
01-08-2014, 05:28 PM
I don't think NSF has the kind of funding which allows them to even look at every post, much less correct these kinds of things.

If someone would have said to Jinseeker that after fusion, big pain would be inevitable, you may be sure that someone looking every time every post here would have done the right clarification.
But about non surgical options there is not allways someone like you (is not your work) reading negatives comments to deny them.. yes the positive ones..

hdugger
01-08-2014, 05:44 PM
If someone would have said to Jinseeker that after fusion, big pain would be inevitable, you may be sure that someone looking every time every post here would have done the right clarification...

I have seen these kinds of misstatements about surgery being corrected, but my experience is that it is (mostly) us participants and not the moderator making the correction.

The thing is that there are *a lot* of people with personal experience/knowledge about surgery. But, with the exception of (I think) me, there is no one else on the forum with a lot of knowledge about exercise in adult patients (and, even that, second-hand, since it's my son doing the exercise). And, with the exception of Mamamax (who, I believe, is no longer participating here) there is no one at all with knowledge about bracing in adult patients.

So, because we just have so few people with knowledge in these areas, it's just far, far more likely that there will be (uncorrected) misstatements made. If someone like Foofer were regularly participating here, instead of participating only on the private forum, we'd all benefit from her experience, and she could also correct misstatements. But, because she and Mamamax and other people like them are no longer on this forum, it sort of *is* my job to make sure that info about exercise and bracing is as correct as possible. If not me, I'm not sure who else here can do it.

I'd love to have Jinseeker stick around, or for Foofer and others to return, so that we could have the best info possible on how to address adult curves conservatively.

hdugger
01-08-2014, 06:03 PM
Jinseeker, I'm only finding one research article on Spinecor in adults, and it's just two case studies:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2793497/

I'm hoping there will be further investigation in this area, but I'm not seeing anything else at this time.

Pooka1
01-08-2014, 08:35 PM
how do you know that?

That was unclear. *IF* he as progressing she would continue to progress because there is no reason related to brace wear that it would stop when taken off.

That was a general statement that doesn't apply to jinseeker who is NOT progressing recently.

But that said, maybe all the muscle atrophy from wearing a brace for two years would destabilize his stable back if muscle is involved in his stability. Who knows.

Pooka1
01-08-2014, 08:40 PM
Dr. McIntire discussed the issue of a brace that claims to avoid muscle atrophy. If it restricts ROM then it causes atrophy unless you counter it with PT is I recall. A scoliosis brace that doesn't restrict ROM isn't doing anything, just hanging there. There was some possible exception that didn't pertain to a brace like Spinecor but rather a knee brace and such.

I think that is why Spinecor changed their claim from just being able to do PT in the brace to having PT with the brace as part of the protocol. The claim was counterfactual.

hdugger
01-08-2014, 08:44 PM
muscle atrophy

Is there some reason you are repeatedly (I've counted three times in this discussion) talking about atrophy with a brace specifically designed to increase muscle tone?

hdugger
01-08-2014, 08:47 PM
Dr. McIntire discussed the issue of a brace that claims to avoid muscle atrophy.

Can you reference that discussion so that we can evaluate it for ourselves? I've seen nothing in the literature to support the idea of muscle atrophy with spinecor.

Pooka1
01-08-2014, 08:48 PM
Is there some reason you are repeatedly (I've counted three times in this discussion) talking about atrophy with a brace specifically designed to increase muscle tone?

A scoliosis brace designed to increase muscle tone is an oxymoron. The knee brace increases certain muscle tone but decreases everything that has a restricted ROM.

Mamamax tried to make this claim so I started a thread to ask Dr. McIntire. This has been put to bed. It is an oxymoron. Just because they claim it doesn't mean it is true, especially concerning the Montreal crowd where other surgeons can't repeat their results.

The Montreal types may "know" the brace increases muscle tone but they have yet to "show" it to my knowledge. It's all talk.

Pooka1
01-08-2014, 08:50 PM
Can you reference that discussion so that we can evaluate it for ourselves? I've seen nothing in the literature to support the idea of muscle atrophy with spinecor.

Have you seen anything the shows muscle didn't atrophy or was built up? That's the positive claim. Ask me to disprove gods is not how debate works. Spinecor is making the positive claim here and it is counterfactual on its face.

hdugger
01-08-2014, 08:52 PM
Here is the summary on spinecor from the isico site
http://www.isico.it/clinica/scoliosi/8-spinecor.html

And their summary on its effect on muscles

Compared to the rigid corset SpineCor the system is virtually invisible (a T-shirt under your clothes ...) and allows all movements of the trunk , in addition, does not require compensatory exercises because it has a less negative impact on the physical level (and, of course, psychological), the disadvantage

hdugger
01-08-2014, 08:57 PM
Sorry jinseeker. We sometimes get caught in these little eddies.

To pooka - I have seen several references, including on the isico site, on spinecor's muscle-sparing features. If you want to enter some other fact into evidence, just do so. Until then, I will rely on the information in possession.

hdugger
01-08-2014, 09:22 PM
Sorry jinseeker. We sometimes get caught in these little eddies.



So, I've now searched on Kevin's posts with the keyword "spinecor" and, when that didn't return anything, the keyword "atrophy" (which returned things, but nothing about bracing). I am using the Kevin_MC user name.

If you could link to his post about this topic, we'd all be able to make sense of it directly. I'd find that more helpful then relying on a summry - there's always a good deal of depth and meat in Kevin's posts.

Pooka1
01-08-2014, 09:48 PM
"The short answers: Yes, bracing causes atrophy of the muscles. Specifically the paraspinal muscles. Exercise can and does help this. Basic concept of muscle physiology is, for muscles - use it or lose it." - Dr. McIntire

Unless Spinecor is hanging off the patient, it is restricting ROM. How else could it even work in principle if it isn't doing anything?

hdugger
01-08-2014, 09:48 PM
So, I've now searched.

Actually, sorry, I'm going to back out of the atrophy discussion altogether. For some reason I got distracted by that piece and forgot the big picture.

So, the big picture is that teenagers wear braces (hard braces) for years and, whatever effect that might or not have on their muscles, once they take off their braces, they don't suddenly progress.Whether that's because they exercise while in brace, or wean off them slowly, or for some other reason, the fact remains the same. Wearing a brace does not *increase* progression (at least in kids, where it's mostly studied). It prevents progression while the brace is worn, and the final curve (after weaning) on average stays the same even many years later.

That is not, at all, to promise that your curve won't progress, with or without a brace. I know the odds increase as curve size increases. But, forgetting the atrophy distraction, there's just nothing in the bracing literature that suggests that braces of any kind (even hard braces) *increase* progression once they are removed.

Again, sorry for the brief foray into the bowels of bracing literature :)

I do have a message out to the ISICO folk for their feedback. I'll let you know what I hear.

hdugger
01-08-2014, 09:53 PM
"The short answers: Yes, bracing causes atrophy of the muscles. Specifically the paraspinal muscles. Exercise can and does help this. Basic concept of muscle physiology is, for muscles - use it or lose it." - Dr. McIntire

Sorry, could you *link* to the discussion. The quote isn't helping because he seems to just be talking about bracing in general. I'd like to see the whole context of his discussion.

"Excercise can and does help" is also what I've heard. So, bracing is hard on the muscles, but exercise helps with the weakness caused by bracing. So, that's helpful - Jinseeker is already doing exercise, I'm assuming she would continue that in brace (should she pursue it)

And, see my post above, in the big picture, this isn't really a concern since even teens in hard braces don't progress after weaning. So, no reason to expect a progression after wearing a soft brace.

hdugger
01-08-2014, 09:59 PM
Oh, never mind, I found the thread. Here it is:

http://www.scoliosis.org/forum/archive/index.php/t-12149.html?

Kevin specifically limits his discussion to rigid braces, and mentions that's this the reason they wean kids off braces at the end - so that their muscles will have regained strength by the time they start.

Here's the remainder of his pariticipation in the discussion:

"Not a whole lot more to add. There are a handful of studies (although not many) that have looked at paraspinal atrophy during brace wear. I'm not sure specifically what type of brace or if it was varied, but it was definitely looking at the rigid braces."

This is why seeing the whole discussion is so useful. Now it's clear what type of brace he's talking about (rigid only) and that weaning afterwards counteracts the effects.

tonibunny
01-08-2014, 10:00 PM
Dr. Mehta, unfortunately, is retired. Tonibunny, over in the Scoliosis Support forum in the UK, met with her recently, but I suspect she is not still responding to emails. However, there is a PT clinic in the hospital where she used to work run by Tony Betts, and he has a good deal of knowledge (and is publishing reports) in this area. You might try to reach out to him - since he worked with Dr. Mehta and, likely, has the greatest depth of knowledge in side-shift of anyone practicing in this area.

As Pooka pointed out, we have only had one adult patient on this forum using the Spinecor, so our knowledge is not very deep on this topic. Here is that same posters discussion about her experience, over on the Scoliosis Support forums - http://www.scoliosis-support.org/showthread.php?t=8948.

Best of luck, and do let us know how everything turns out.


As Hudugger suspects, unfortunately Dr Mehta is very frail and elderly now and is not able to correspond with scoliosis patients anymore. However, when I met her a few months ago she told me how much she approved of the ISICO group's work, and she demonstrated how she uses the Side-Shifting technique that she devised in order to relieve the pain of her own (very severe) scoliosis.

Tony Betts is head physio at the Royal National Orthopaedic Hospital, which is one of the largest centres for the treatment of scoliosis here in the UK - as Hudugger says, this is where Ms Mehta was based. The RNOH is an NHS hospital, but Mr Betts also has a private clinic so it would be much easier for you to contact him there. Here's a link:

http://www.tonybettsphysio.co.uk/

Pooka1
01-08-2014, 10:03 PM
How do you think Spinecor maintains the corrected spine if they don't restrict motion? Magic?

It's an oxymoron.

I can't find the thread where I asked him about Mamamax's continued claims she repeated from Spinecor. I bet it was erased due to dissension.

I included Spinecor and then he made that quote.

Either it's a brace or it isn't. Is Spinecor holding the curve or isn't it? The radiographs suggest it is. Any brace that is claimed to build muscle is an oxymoron.

Pooka1
01-08-2014, 10:05 PM
This is why seeing the whole discussion is so useful. Now it's clear what type of brace he's talking about (rigid only) and that weaning afterwards counteracts the effects.

The research he quoted concerned hard bracing. His comment I quoted was not so restricted.

hdugger
01-08-2014, 10:15 PM
The research he quoted concerned hard bracing..

Yes, exactly.

But no reason to continue this digression. If muscle atrophy has no effect on progression in bracing patients, it's no more than an academic point.

Thanks so much for the link, Toni, and for Dr mehta's feedback on the isico group. I'm holding out some hope for their providing clarity to this area.

hdugger
01-08-2014, 10:44 PM
Sorry, I realize I'm continuing the digression, but I used to be a technical writer and these little details just nag at me.

Your summary of the discussion which I just linked to appears to get the order wrong.

Correct order:

BalletMom starts a discussion about bracing and muscle atrophy (her child is in a hard brace)

several posts - none from Kevin or Pooka

Kevin enters the discussion and says the first quote "bracing causes atrophy of muscles" (said in a discussion which, up until this point, has been about hard braces)

*then* you extend his assertion to Spinecor in the next post, saying "Including Spinecor, their claims otherwise notwithstanding." This is the first time that the Spinecor brace is mentioned in the discussion, and it happens *after* Kevin's comment about bracing causing atrophy. Not before.

then several posts - none from Kevin or Pooka

Then, kevin enters again and says that thing about "but it [the studies he's seen] was definitely looking at the rigid braces"

That's why I ask for a link to the source - because people reach different conclusions of what they've read. When I read this, it seems clear to me that Kevin is *correcting* your assertion that Spincor causes atrophy when he says that the only studies he's seen are "definitely looking at the rigid braces."

Sorry again, but I just wanted to get those details straight. It's not a huge deal (atrophy does not equal progression) but it's useful to have the evidence down clearly in case someone else, considering spinecor and worried about muscle atrophy, thinks that our resident scientist has said that the two are linked.

hdugger
01-08-2014, 11:23 PM
But in searching through the discussions I did find one thing of interest. The adult patient on this forum who used spinecor said that, six months after weaning off the brace, her curve was (slightly) smaller then when she started wearing the brace. She's not suggesting that spinecor decreased her curve - but it doesn't seem (from our sample of one) that her curve increased out of brace. She was also doing schroth exercises.

flerc
01-08-2014, 11:34 PM
I have seen these kinds of misstatements about surgery being corrected, but my experience is that it is (mostly) us participants and not the moderator making the correction.

The thing is that there are *a lot* of people with personal experience/knowledge about surgery. But, with the exception of (I think) me, there is no one else on the forum with a lot of knowledge about exercise in adult patients (and, even that, second-hand, since it's my son doing the exercise). And, with the exception of Mamamax (who, I believe, is no longer participating here) there is no one at all with knowledge about bracing in adult patients.

So, because we just have so few people with knowledge in these areas, it's just far, far more likely that there will be (uncorrected) misstatements made. If someone like Foofer were regularly participating here, instead of participating only on the private forum, we'd all benefit from her experience, and she could also correct misstatements. But, because she and Mamamax and other people like them are no longer on this forum, it sort of *is* my job to make sure that info about exercise and bracing is as correct as possible. If not me, I'm not sure who else here can do it.

I'd love to have Jinseeker stick around, or for Foofer and others to return, so that we could have the best info possible on how to address adult curves conservatively.

In fact without non surgical defamers there would not be any problem here.
And certainly it would be great to have have again many adults interested in non surgical options. This was never a friendly place for that people.

flerc
01-09-2014, 12:19 AM
How do you think Spinecor maintains the corrected spine if they don't restrict motion? Magic?

It's an oxymoron.



"The short answers: Yes, bracing causes atrophy of the muscles. Specifically the paraspinal muscles. Exercise can and does help this. Basic concept of muscle physiology is, for muscles - use it or lose it." - Dr. McIntire

Unless Spinecor is hanging off the patient, it is restricting ROM. How else could it even work in principle if it isn't doing anything?


*IF* she as progressing she would continue to progress because there is no reason related to brace wear that it would stop when taken off.




Even if it did halt progression, you only wear it two years, yes? You would continue progressing when you take it off and perhaps at a faster rate since you won't have any muscle tone from being supported for two years in a brace.



Either it's a brace or it isn't. Is Spinecor holding the curve or isn't it? The radiographs suggest it is. Any brace that is claimed to build muscle is an oxymoron. ????????????????

Is incredible in a new thread all what you may say according your irrational thinking.

Certainly it would not be needed to be a scientist (as you are saying you are), to realize that only someone with not a good background and training in logics may claims something of all of that.

If you don’t know about some case you say ‘there is no evidence’, if you don’t know why something works you say it cannot works, if you have not idea about something, you talk as if you know about it and if certainly there are reasons to think that may works, you say that there are not and only may works if it would be magic.
If this forum would be moderate in a serious way, you could not be in non surgical sections.

Do you know what is a brace, how it works? Why are effectives in stopping and even reducing curves in kids/teens? Do you know what is the Spinecor? Do you know how it works? What do you know about physiology? What do you know about something in order to say what you are saying here? It seems that absolutely nothing of course!

Pooka1
01-09-2014, 08:19 PM
People think i am overacting when they see me and sometimes i question myself is any of what i am really doing working at all, or am i just needlessly anxious about it. Whichever the case, the confusion and ambiguity never leaves me.

Okay I looked at some of your other threads. I also notice you are on my "Friends" list. I don't have so many but you are on it! :-)

I think you are in an unusual spot... a large curve that is just hanging there near the surgical range. There are a few other players here over the years who were in a similar situation but only a few. I think you stated you got two opinions, one to operate and one to wait. I once thought you would have a hard time finding a surgeon to fuse you but Linda disagreed. So I now think your situation is just going to be chock full of opposing professional opinions which is a very tough thing to deal with.

As to what you are doing "working", it isn't crazy to use PT to control pain. It's better than surgery. And given you are not progressing maybe PT is even controlling progression. Who knows.

I did see in one past thread that you needed to do more and more just to hold ground on the pain. I forget what PT you are doing (Schroth?) but maybe a new opinion and doing different PT would help more. Did you try the ISICO stuff? Maybe Torso rotation would work for you and you could get away with far less per week.

I guess if I were you, I would not want to be blind-sided about the surgical window. So over the years, besides monitoring your curves, I would be asking questions about bone quality as it affects fusion success (if osteoporosis runs in your family) and the length of the fusion and if it would change if you wait as discussed in previous threads of yours. Maybe it would help you to to be less anxious to have more information if you don't have this type of information already.

They say scoliosis not an emergency situation. You are the poster boy for that. :-) But that can be a double-edged sword. This whole scoliosis thing has dogged you most of your life it seems and you are still young! I just hope people similarly situated to you will respond except there are not so many people with large non-progressive curves around.

Good luck.

jrnyc
01-09-2014, 08:40 PM
hi Jinseeker
i am sending you a private message

jess...and Sparky

Jinseeker
01-10-2014, 02:25 AM
Okay I looked at some of your other threads. I also notice you are on my "Friends" list. I don't have so many but you are on it! :-)

I think you are in an unusual spot... a large curve that is just hanging there near the surgical range. There are a few other players here over the years who were in a similar situation but only a few. I think you stated you got two opinions, one to operate and one to wait. I once thought you would have a hard time finding a surgeon to fuse you but Linda disagreed. So I now think your situation is just going to be chock full of opposing professional opinions which is a very tough thing to deal with.

As to what you are doing "working", it isn't crazy to use PT to control pain. It's better than surgery. And given you are not progressing maybe PT is even controlling progression. Who knows.

I did see in one past thread that you needed to do more and more just to hold ground on the pain. I forget what PT you are doing (Schroth?) but maybe a new opinion and doing different PT would help more. Did you try the ISICO stuff? Maybe Torso rotation would work for you and you could get away with far less per week.

I guess if I were you, I would not want to be blind-sided about the surgical window. So over the years, besides monitoring your curves, I would be asking questions about bone quality as it affects fusion success (if osteoporosis runs in your family) and the length of the fusion and if it would change if you wait as discussed in previous threads of yours. Maybe it would help you to to be less anxious to have more information if you don't have this type of information already.

They say scoliosis not an emergency situation. You are the poster boy for that. :-) But that can be a double-edged sword. This whole scoliosis thing has dogged you most of your life it seems and you are still young! I just hope people similarly situated to you will respond except there are not so many people with large non-progressive curves around.

Good luck.

The torso rotation exercises I am doing is RAB, rotational breathing techniques incorporated with Schroth therapy.

As for bone quality and disk degeneration, those can worsen too due to spinal fusion, as the vertebrae discs below the fused segments take in more load. My thoracic curve pretty much covers my entire spine, so If I am to be fused it be a long fusion anyway whether I wait later or get it now. Apart from this, I do want to be able to keep working after surgery. My work conditions are often tough and I sit on a chair for like 12 hrs at a computer. I love my job and do want to keep that up, but don't know if being post-op will ever allow me to.

I am in a tough position indeed, and deciding is quite hard. Whichever the case, I have to make a decision not just out of reason, but out of faith

Pooka1
01-10-2014, 07:08 AM
I am in a tough position indeed, and deciding is quite hard. Whichever the case, I have to make a decision not just out of reason, but out of faith

Maybe there is more than one right answer for you. You seem to have more latitude than some of these other adults. Because you are young with a grey area curve, you might do well for years as you are and you might do well if you had surgery. That's the vibe I get from you. You seem to have real options.

Love,

A lay person :-)

mariaf
01-10-2014, 09:30 AM
I have seen these kinds of misstatements about surgery being corrected, but my experience is that it is (mostly) us participants and not the moderator making the correction.

I agree that with regard to most topics (surgery or anything else) it is more often participants either making corrections or presenting opposing views. I think it's unrealistic to expect a moderator to do this, first because of time considerations and also because many issues are not cut and dry - and sometimes it's just best to let both sides of an issue 'talk it out'.

I'm sure that everyone here has wished at one point or another that the moderator(s) would set someone or something straight, delete a post, or maybe even ban a member. But it doesn't and can't work that way absent some absolutely egregious act.

I co-moderate another forum and we don't view it as our job to correct everything that members post, even if we think they are incorrect. We can certainly weigh in, since we are members as well as moderators. But we should all realize that while some of us may have experience with different treatment methods (surgery, bracing, etc.), the bottom line is that what folks post here is simply their opinions - perhaps colored by their own experiences both positive and negative, but still just their personal view and opinion.

mariaf
01-10-2014, 09:41 AM
Is there some reason you are repeatedly (I've counted three times in this discussion) talking about atrophy with a brace specifically designed to increase muscle tone?

I was going to say, before I even read Sharon's post(s), that simply because the makers claim the brace was "designed to increase muscle tone", I can't recall seeing any proof or studies to back this up, certainly not from anyone other than the inventor(s) in Montreal. The concept also doesn't make sense to me. I just can't find a way to figure out how that could work. I have also asked a few orthos over the years about this brace and none of them used it. When I asked why, they just basically said they had not seen anything (i.e., proof) that would warrant its use. They would instead use the Boston, the Providence, etc. in patients who were bracing candidates.

In the interest of full disclosure, I will say that I am very hesitant to believe their claims on anything because I personally know families who were misled by these folks in Montreal. I'm not going to go into the whole thing, but just as one example, I know a family that was told repeatedly that out-of-brace x-rays were not necesssary and to just go by what the in-brace x-rays were showing. In other words, they were assured that so long as the in-brace x-rays were good, the curve was not progressing. This turned out to be completely false.

I do want to say that I am not referring to Spinecor's use in adults for pain relief, but with regard to its use in children with the promise of halting and/or correcting the curve.

But if someone is not completely forthcoming in one area, I think they have to lose some credibility overall.

Pooka1
01-10-2014, 10:23 AM
The point about ALL braces, because they are restricting motion, necessarily cause muscle atrophy is beyond obvious. We don't need a PhD muscle physiologist on that although he confirmed it.

The Montreal crowd has a record that does NOT conduce to believing them on anything much less obvious nonsense that their brace does not restrict motion and therefore does not cause muscle atrophy. It is very naive to blindly believe the Montreal crowd on this point.

mariaf
01-10-2014, 10:46 AM
It is very naive to blindly believe the Montreal crowd on this point.

From what I've seen over the years, I would have to completely agree.

You have to earn credibility. They clearly have not.

flerc
01-10-2014, 12:14 PM
Jinseeker, I strongly recommend you to don't be influenced with Pooka1's comments. She is a non surgical defamer and seems to has not any knowledge about nothing related with scoliosis, except about surgery issues. Certainly she didn't reply nothing to this


Is incredible in a new thread all what you may say according your irrational thinking.

Certainly it would not be needed to be a scientist (as you are saying you are), to realize that only someone with not a good background and training in logics may claims something of all of that.

If you don’t know about some case you say ‘there is no evidence’, if you don’t know why something works you say it cannot works, if you have not idea about something, you talk as if you know about it and if certainly there are reasons to think that may works, you say that there are not and only may works if it would be magic.
If this forum would be moderate in a serious way, you could not be in non surgical sections.

Do you know what is a brace, how it works? Why are effectives in stopping and even reducing curves in kids/teens? Do you know what is the Spinecor? Do you know how it works? What do you know about physiology? What do you know about something in order to say what you are saying here? It seems that absolutely nothing of course!


So don't give credit to what she and her accomplice Mariaf may say you, they want to convince you that surgery is the only valid options in scoliosis treatments.
Use your brain, common sense, intution.. try in any way to not be convinced for what you read in this 'surgical forum'.
I'll come back to talk with you about the Spinecor,

mariaf
01-10-2014, 12:33 PM
So don't give credit to what she and her accomplice Mariaf may say you, they want to convince you that surgery is the only valid options in scoliosis treatments.

Where do you get this stuff?

Have you talked to the hundreds of parents I have spoken with over the past decade? They would tell you that your statement is not true.

However, if I know that Spinecor (and the insistance by the providers that parents only focus on in-brace x-rays and forego radiographs out of brace) has caused curves to progress in several cases, you can rest assured I am going to let everyone know.

For the life of me, I can't understand why you would NOT want parents to be aware of things like this.

flerc
01-10-2014, 01:17 PM
Only a perfect idiot may give credit to what someone supporting a defamer (as Pooka1 is) may says. So since you always supports her in her pathetic work and I'm not idiot (I suppose) I cannot give you any credit about what you may say about non surgical options.

flerc
01-10-2014, 01:18 PM
I'll come back to talk with you about the Spinecor,

If I can..

hdugger
01-10-2014, 02:18 PM
Skipping over lots of back and forth and apologies to Jinseeker, again, for my role in getting this topic off track. I'll try to just post stuff that I think will be of interest to you and keep any other responses elsewhere. Let me know if I utterly fail in that :)

Jinseeker,

The ISICO clinic is forwarding my question on to Alessandra Negrini (who is the head PT at one of their clinics - you can see her bio here - http://www.sosort2012.org/index.php?option=com_content&view=article&id=41:negrini-alessandra&catid=13&Itemid=142

Following out her bio, she's done some interesting research about reducing loss of in-brace correction (in children) that might be of interest.

So, while wearing a brace is *not* expected to increase progression (when effective - braces hold curves), there is expected to be a loss of "in-brace" correction after you stop wearing a brace. So, for example, if you started wearing a brace at 30 degrees, your in brace curve might drop to 20 degrees. But, after you'd stopped wearing the brace, the curve would be expected to go back to 30 degrees. That is, braces will not reduce a curve, except while you're wearing the brace.

So, anyway, that's the setup. After wearing a brace, if bracing is successful, you should find yourself with the same curve you started with before treatment. And, after that, you should drop into the general scoliosis population and be expected to progress, through adulthood, at the same rate as anyone else with the same curve.

What this study found, though, was that with their exercise program they could hold the curve, after weaning, at the *in brace* correction. Lots of caveats on this - the curves were small, the in-brace correction was small, braces aren't expected to reduce curves, etc. But, it's an interesting report (and got her some kind of award at the 2008 SOSORT meeting)

So, with all those caveats, here's the report itself - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2672077/

I'll let you know once I hear back from Alessandra

Note that I don't see a mention of the type of brace - they use both hard and soft there.

hdugger
01-10-2014, 02:33 PM
Jinseeker, a few clarifications on my quick scan of the posts I missed.

I believe the issue with Spinecor (or other braces) is that they may not *hold* a curve from progressing. I don't think anyone is suggesting, and I've seen no evidence to support the idea, that braces of any kind would *hasten* progression. It is certainly true (again, based on ISICO research) that soft braces like Spinecor do less to keep a curve from progressing then a hard brace would. But, again I believe, no one would prescribe a hard brace to an adult.

I've seen concerns about the vendors of Spinecor. I have no independent way of evaluating that. But I have some trust in the ISICO people (who Dr. Mehta has also worked with), so I'm sort of using them as my fact checkers in this area. But, again, I have no *direct* knowledge of any of this, and you don't know anything about my ability to judge anything, so please use your own judgment to decide who to trust. It's your back - I'd hate to think that I did anything to lead you astray on any medical decision.

Again, best of luck and I'll let you know when I hear back from ISICO.

Pooka1
01-10-2014, 04:34 PM
The torso rotation exercises I am doing is RAB, rotational breathing techniques incorporated with Schroth therapy.

As for bone quality and disk degeneration, those can worsen too due to spinal fusion, as the vertebrae discs below the fused segments take in more load. My thoracic curve pretty much covers my entire spine, so If I am to be fused it be a long fusion anyway whether I wait later or get it now. Apart from this, I do want to be able to keep working after surgery. My work conditions are often tough and I sit on a chair for like 12 hrs at a computer. I love my job and do want to keep that up, but don't know if being post-op will ever allow me to.

I am in a tough position indeed, and deciding is quite hard. Whichever the case, I have to make a decision not just out of reason, but out of faith

Here as some questions I would ask myself were I you...

1. Have you asked a surgeon where your fusion would end if you did it now?

2. Would that fusion compromise sitting at all?

3. If PT at present levels would control your pain the rest of your life, would you be willing to do it the rest of your life?

4. What if you got sick and couldn't do PT for a length of time?

5. Are you investigating braces to avoid having to do PT for pain?

6. Would you wear a brace the rest of your life to avoid pain?

I think if you start progressing, it will be a whole new ballgame. But that is a hypothetical at this point.

Have you priced the Spinecor brace. I think chiros are charging several thousand dollars last I knew. Might be more now. They might make you buy chiro treatments just to get the brace. Be careful with that. These people have no relevant training to be dealing with scoliosis. The problem is most surgeons will not traffic in the brace so people are forced to deal with chiros. Nobody can reproduce the results out of Montreal. With some testimonials and other information, we now have a good sense why that is... bad measurements.

But none of that should affect whether an adult can get pain relief. I think there is evidence they can. I think the woman here wore her brace less than the two years for some reason. I don't know why she quit early.

Good luck.

flerc
01-10-2014, 05:11 PM
Jinseeker, in this thread you may absolutely trust in Hdugger noble intentions.

I think it has not any sense to talk about atrophy of the muscles because the use of the Spinecor.
http://www.youtube.com/watch?v=Ol-jhWdwD3s
I cannot find the first Spinecor video I saw showing a gymnastic girl using it. I'll try to find it.
Unfortunately I never saw the Spinecor because it not exixts in my country, but I'm sure is more close to the concept of 'Corsets' than braces. Some kind of corsets used in other times also allowed movements and also helped to keep the spine straight. Surely nobody may assure you, that after a time keeping an important reduction of your curve, when you remove it, the curve will increase again the lost degrees. I may say you that even the Spinecor inventor cannot assure this.

hdugger
01-10-2014, 05:37 PM
No matter how noble my intentions, I think I'm often wrong.

I think a few good orthopedic surgeons (preferably SRS members) are probably a better place to go for opinions on surgery. Note that there's *alot* of variability in this area, and I really have no idea what's driving the wide range of opinions.

Someone like Dr. Hey seems to have the sense that surgery is a good solution for many patients - does surgery down to pretty (traditionally) small curves (in the 40s). The Dr. my son sees in Portland is far more hesitant about doing surgery. With no pain or progression, but a larger curve then yours, his last comment to us is that my son, basically, had all the time in the world to think about surgery. I think he said he could do it any time before his 60th birthday.

So, different people think different things, even amongst specialists.

Pooka's question about how low the fusion would go is, to me, the most important one. You can change your mind about PT and bracing, but, once you're fused, you're fused. There's no backing out of that. Because you have a (relatively) small curve - I'd just be very cautious about leaping into something that you can't change your mind on. On how low the fusion would go: One thing we see alot on this forum, even with the newer hardware, is that people who are fused lower in the lumbar spine often have ongoing problems even after surgery. You can have problems, even with a fusion that ends higher, but there seems to be many more problems as the fusion goes lower.

I wish Linda were participating in this thread - she has the greatest depth of knowledge on these things. Her normal caution is to exhaust every conservative method before you even consider surgery - because very unexpected things can happen once you go down the surgical route. Lots and lots of people feel much better, but we certainly also see people with continued pain and ongoing surgeries.

That's why I recommend talking to a few experts. With a curve as borderline as yours, I'd want to hear the go ahead from several people before you even thought about taking that step..

Again, I don't know enough about Spinecor to give you good guidance one way or the other on that. I'm hoping the ISICO people come through with some advice.

hdugger
01-10-2014, 05:49 PM
I think the woman here wore her brace less than the two years for some reason. I don't know why she quit early..

Mamamax says in her thread - "Bracing treatment ended for me after approximately 13 months. At fitting the standard protocol for both adolescents and adults was 2 years. I've noted that manufacturer has adjusted this time period for adults to 14 months. "

also from that thread - after weaning

"Post treatment, the pain levels are only episodic with over exertion. This has been maintained six months post treatment and I can not detect any pain progression. Posture remains rehabilitated from 4'9" to 5' (evening measurement, morning is slightly higher)."

Only one person's story, obviously, but so far it's the only actual evidence we have about Spinecor and adults. Again I wish we had a wider range of people here to ask questions of.

flerc
01-10-2014, 06:03 PM
Mamamax says in her thread - "Bracing treatment ended for me after approximately 13 months.

Exactly, it was not what Pooka1 was saying..

flerc
01-10-2014, 06:09 PM
Moderator should to not allows her to posts in these threads..

flerc
01-11-2014, 12:07 AM
Jinseeker, I think we may says that after growth, the only force leading a curve to increase, is the gravity force and in a curved spine this force is decomposed into a vertical force and an horizontal force, which push the concave side and should to be the responsable of the progression. Vertebras are not opposing to that force, only to the vertical one, so something else as muscles, ligaments, fascias, rib cage (in thoracic zone), nerves, veins, organs, something is doing the same force (magnitud) of that lateral force but in the opposite direction, not allowing the lateral force to increase the distance between the convex side of adjacent vertebras.

What Vbs and fusion does is to not allows the increment of that distance in a direct way, braces in a more indirect way, but also opposing to that lateral force. Greater the curve, greater that force and lesser the vertical one.

So, if you can hold an important reduction of your curve with the Spinecor, the lateral force will be lesser. Is not irrational then to suppose that if also something else is done, it would be possible to increment the resistance of the body tissues fighting against that lateral force, so when the Spinecor is removed, that force will be lesser (lesser curve) and will find a stronger force opposing it. So why would be impossible to get a permanent reduction? I never heard a justification.

flerc
01-11-2014, 12:09 AM
Please say me if I'm not being clear enough.

flerc
01-11-2014, 12:26 AM
I'm supposing you have a flexible spine in order to get an important reduction in brace and your vertebras are not too much wedged.

rohrer01
01-11-2014, 12:47 AM
Jinseeker, in this thread you may absolutely trust in Hdugger noble intentions.

I think it has not any sense to talk about atrophy of the muscles because the use of the Spinecor.
http://www.youtube.com/watch?v=Ol-jhWdwD3s
I cannot find the first Spinecor video I saw showing a gymnastic girl using it. I'll try to find it.
Unfortunately I never saw the Spinecor because it not exixts in my country, but I'm sure is more close to the concept of 'Corsets' than braces. Some kind of corsets used in other times also allowed movements and also helped to keep the spine straight. Surely nobody may assure you, that after a time keeping an important reduction of your curve, when you remove it, the curve will increase again the lost degrees. I may say you that even the Spinecor inventor cannot assure this.

Jinseeker,
I'm not for or against anyone trying things. Here's a link to a Spinecor website that has a diagram of the actual brace. It all anchors at the groin and is a system of strong elastic straps. I don't know how they would fit these for men. I didn't listen to the video blurb so don't know what this woman is saying. Again, my only reason for posting this is to show you and Flerc what the brace looks like so you would know what you would be getting into before you decide whether or not it's for you.
http://www.spinecor.me/p/about-spinecor.html

I did a simple Google search that you have probably already done.

(bold mine)

If you decide on this brace, it would be nice to hear how it goes for you. Again I'm not for or against it.

Best wishes,
Rohrer01

Pooka1
01-11-2014, 01:04 AM
Hey Rohrer, do you remember the McClean's article about the young adult guy who said he got pain relief? That article was riddled with nonsense but I believe the guy got pain relief in his back without adding any pain anywhere else ;-)

rohrer01
01-11-2014, 01:16 AM
Hey Rohrer, do you remember the McClean's article about the young adult guy who said he got pain relief? That article was riddled with nonsense but I believe the guy got pain relief in his back without adding any pain anywhere else ;-)

No, I don't recall reading that article. I'm figuring that they have to have a way to accommodate males. I just don't know what it is. They NEVER show men or boys in this brace. I couldn't find one picture...

Pooka1
01-11-2014, 02:16 AM
No, I don't recall reading that article. I'm figuring that they have to have a way to accommodate males. I just don't know what it is. They NEVER show men or boys in this brace. I couldn't find one picture...

Here it is... an epic tale about an imaginary conspiracy chock full of counterfactual material. But there is the testimonial of the young adult guy that is relevant to jinseeker.

http://www.macleans.ca/article.jsp?content=20080123_55198_55198&page=1

flerc
01-11-2014, 08:50 AM
I'm supposing you have a flexible spine in order to get an important reduction in brace and your vertebras are not too much wedged.

But even if don't have a flexible spine, you can turn it flexible and if wedge is important, bone remodeling in adults is a fact.

hdugger
01-11-2014, 10:49 AM
I don't know how they would fit these for men.

I'd assumed that Jinseeker was female, but perhaps that's wrong. In any case, yes, the Spinecor is also used for boys according to the group at ISICO.

rohrer01
01-11-2014, 06:00 PM
I'd assumed that Jinseeker was female, but perhaps that's wrong. In any case, yes, the Spinecor is also used for boys according to the group at ISICO.

I tried to PM you, but you either don't accept PM's or you have me blocked. Look at HIS x-ray. Where are ovaries shielded in the pelvis?

hdugger
01-11-2014, 10:28 PM
I tried to PM you, but you either don't accept PM's or you have me blocked. Look at HIS x-ray. Where are ovaries shielded in the pelvis?

I have PM turned off. OK I'll change my assumption.

leahdragonfly
01-11-2014, 10:44 PM
That does appear to be a male pelvis. The pelvic opening is very narrow and appears more squared off than a female pelvis.

flerc
01-11-2014, 11:15 PM
So, if you can hold an important reduction of your curve with the Spinecor, the lateral force will be lesser. Is not irrational then to suppose that if also something else is done, it would be possible to increment the resistance of the body tissues fighting against that lateral force, so when the Spinecor is removed, that force will be lesser (lesser curve) and will find a stronger force opposing it. So why would be impossible to get a permanent reduction? I never heard a justification.

I don't know if only doing normal movements or the Spinecor PT could be the necessary something else. Probably it only could be the Torso Rotation Machine. It's not recommended for big curves, but keeping an important reduction, I suppose it would not be dangerous to use it.

Pooka1
01-12-2014, 09:53 AM
Jinseeker, I had a thought for you.

I looked at your radiograph and it seems that you have a trunk shift or a lean.

There are at least a few posts on Dr. Hey's blog about how these unbalanced positions cause pain. So I think if the Spinecor can change your posture past the wearing time or if Alexander technique or one of those things can teach you to change your posture, you might be able to avoid PT per se. It seems like you are saying the PT is taking up more and more time and is becoming less and less effective. That may be because it isn't addressing the imbalance.

The goal is to remove the lean somehow. Maybe you can teach yourself how. Maybe just finding the tai chi balance (not using your weight to move) is where the balance is.

I think posture can be changed. I have done it w.r.t. my riding. I didn't use any technique other than realizing I was wasting boatloads of training money until I addressed it. It is the tai chi balance. Posture is everything in the type of riding I do. :-)

Good luck.

ps. please excuse my usage of new agey sounding stuff. I only break it out when necessary. :-)

Jinseeker
01-12-2014, 11:42 AM
To set the record straight, I am male. :)

@ pooka : yes that is what i am currently trying to do with my side-shifting exercises. This is why I sit leaning more to my left so that my torso and head are directly above and inline with my pelvis. I also have a pillow underneath my left buttock to aid my leftward compensatory lumbar curve, and wear a heel lift on my left foot.

I have decided to conclude my activity in this thread as it only has triggered my anxiety rather than given me peace of mind. Initially I was only expecting it to be a discussion on the efficacy of bracing for adults, but the discussion escalated to whether i should get surgery or not, which I have already concluded I will not and go for the wait and see approach as Linda have already recommended to me in the past.

As for bracing and exercise, I have chosen to put a close mind on it when it comes to stopping a scoliosis progression and siding with the fact that it does not work nor does anything to stop a scoliosis progression, since structural scoliosis is a bone problem not muscular in nature, especially when it is due to degeneration of the spine, of which is probably the only reason why my scoliosis may worsen in the future.

This I am doing not just for the sake of peace of mind and ending confusion, but also because after reading countless articles/studies online, it always seem to lie in the grey-area. nobody's right, nobody's wrong, I am free to conclude as i will. IT would seem like I FEEL the same way about surgery when it comes to the future outlook of my spine, pain and degeneration-wise as well.

So folks, thank you for your concern and support. What i will do is just continue my side-shifting, schroth exercises and being consciously aware of my posture 24/7(almost as if i am wearing a brace all the time), and keep fit and not overweight. If my scoliosis still worsens despite my adherence to my exercises and depending on the rate of documented progression is where I will choose to have surgery or not regardless of whether pain is present. if the scoliosis worsens significantly over the years , I will choose to have surgery, if it worsens slightly then I will not since I am willing to bet that I'll be okay with where my curve may end up in the remainder of my life.

WHAT i will NOT do is consult bracing, live the remainder of my life as a gym buff (over-exercising) or participate in a scoliosis rehab program like clear-institute or scoliosis systems as I don't believe they work or even if they did, you will never be able to keep up with the program or bracing for the rest of your life. It is no substitute to surgery and the risks of having it when you wait too long especially when you want to keep yourself from getting a lower fusion level. I'd rather consult those alternatives only when surgery has been DENIED on me rather than BEFORE considering it.

hdugger
01-12-2014, 12:13 PM
To set the record straight...

Even more like my son :)

Thanks, jinseeker. All of that makes total sense and I completely understand about the anxiety part. Before my son had jaw surgery (like his spine, his jaw is kind of wonky) I'd worked myself up into a lather reading the research. A few days away from the research and i felt *much* better.

What you're doing seems to be working, and there are other options available if it ever stops working.

If you have time, please drop an update now or then and let us know how you're doing.

Pooka1
01-12-2014, 01:31 PM
WHAT i will NOT do is consult bracing, live the remainder of my life as a gym buff (over-exercising) or participate in a scoliosis rehab program like clear-institute or scoliosis systems as I don't believe they work or even if they did, you will never be able to keep up with the program or bracing for the rest of your life. It is no substitute to surgery and the risks of having it when you wait too long especially when you want to keep yourself from getting a lower fusion level. I'd rather consult those alternatives only when surgery has been DENIED on me rather than BEFORE considering it.

Good call. You have clearly mastered the fact situation with all these treatment modalities.

Good luck.

flerc
01-13-2014, 08:50 AM
All of that makes total sense and I completely understand about the anxiety part. Before my son had jaw surgery (like his spine, his jaw is kind of wonky) I'd worked myself up into a lather reading the research. A few days away from the research and i felt *much* better.


Absolutely.. my wife is always asking me to have a "normal life". She see my research as something absolutely insane. I can stop it, but surely not to analyzing the problem, something surely not so 'insane' and I suppose is what Jinseeker will continuos doing , so I want to remark some points.

1) I'm not sure if an unconcious postural control (what I think is what is needed) may be achieved in a concious way. Surely would be possible with the paractice of something milenary as Tai chi chuan is and it would not be the only benefit. I have practiced Aikido and a certain kind of yoga and I know how much effective in such kind of postural control they are, but I haven't scoliosis.. anyway I don't renounce to convince my daughter to practice Tai chi some day and certainly it would be far to be unnatural to practice something so good for the rest of the life as many people without scoliosis does.

flerc
01-13-2014, 11:08 PM
2)
As for bracing and exercise, I have chosen to put a close mind on it when it comes to stopping a scoliosis progression and siding with the fact that it does not work nor does anything to stop a scoliosis progression, since structural scoliosis is a bone problem not muscular in nature, especially when it is due to degeneration of the spine

As Sastre (Fed machine) said, regardless the cause leading to the beginning of the curve, when it is initiated, the VH law (as I know only valid during growth) lead to a bone deformation, leading to progression.
Although I’m sure all those researchers thinking the same are ignoring another fact, probably most (as I believe) significant yet, it seems that bone deformation is a fact during growth.

But bone deformation occurs also after growth? If it’s the case, the reason should to be known as it’s known before maturity. I have only ‘found’ an explanation
Distraction was the main principle used in braces of other times, certainly in the super brace used centuries ago, when braces were not seen as a mysterious artefact coming from who knows where. It'd not surprise me if it provoked a major growth in the concave vertabra side. In the way that forces were applied, I think were greater in the concave side. But gravity force apply forces exactly in the opposite way, and certainly we may talk about a distraction in the convex side.
And remodeling never stop, so it would be happening an 'external fixation' effect in that side, leading it to growth, and then incrementing the difference with the concave side.
I'm right? I really hope to be saying something without any sense.
but I have not the expert knowledge to know if it have some sense. If I’m right, we might conclude that only the Spinecor or other brace, could avoid vertebral deformation.
But even supposing vertebral deformation is always present even without suffering ostheoporosis or something similar affecting the bone consistency, is it sure this the only or main cause of adult progression? Or other (and probably the main) reason is the deformation of other tissues?

Suppose you have a very much flexible spine so when you are lying down your degrees are close to 0. At least some of your ligaments and mucles has not the lenght that would have if you haven't scoliosis, surely also not the same tone, something similar with your fascias.. the consistence of your discs, the state of your joints, tendons.. if you stand up, the curve arises again. If something magics turns all your tissues (except bones) normals, as if you have never had scoliosis, may you be sure your curve arise with the same degrees again when you stand up?
If you may, you are being consistent with what you said.

I hope to have good news about you!

hdugger
01-15-2014, 12:43 PM
For anyone other adult interested in Spinecor for adults, I received a response back from Alessandra Negrini at Isisco.

Her response is in line with what I'd expected. They're have some adults with pain for whom they've prescribed the brace and they're seen some improvements in pain control and quality of life. They do not have any personal data from their clinic about it halting progression in adults, and they have not seen anything on Pub Med which would suggest that. So, while they do use it for pain control in adults, they do not use it to slow progression. They are not ruling progression control out - there's no research to show that it doesn't - but there is nothing currently known which would lead them to that conclusion.

As always, I find their input very guarded and reasonable on these topics. I'm very happy to have them working to increase our knowledge in the conservative treatment area.

flerc
01-18-2014, 09:09 AM
I respect all opinions coming from serious professionals, but I'm sure they don't know enough, otherwise they would be able to answer basic questions I use to ask and I may say that even great researchers cannot do it. I continue believing as I said in my first post here (or second?) non surgical scoliosis solution is not full analyzed yet in a scientific way.
And certainly the Spinecor cannot be analyzed as a brace, definitely it's not a brace.

Jinseeker
02-11-2016, 09:22 AM
I have decided on purchasing a spinecor brace soon for adults. My purpose for it is not for decreasing the curve or preventing progression as mine is currently non-progressive. My purpose is to use it to get temporary gains of feeling straighter and stronger just like someone would "buff up" at the gym.

My idea is my own assumption of what I'd expect to happen. I've decided the plan would be to wear the spinecor brace everyday except for sleep, for like 6 months straight to train my mind to remember the proper posture even out of the brace, and then work with the right schroth and straightening and strengthening exercises for the muscles to hold any temporary correction it has made. And then slowly wean off from the brace for like a couple of months to see if If I feel straighter and more pain free on a permanent basis.

Although I doubt it be long before my spine reverts back to its original crooked state and thus cause me to be in pain and feeling compressed again but at least I have given me a couple of months where I feel straighter, stronger and more stable until I am ready to wear the brace for another 6 months again. My decision to be on and off the brace complemented with exercise is also to prevent muscle atrophy.

Anyone think I'd get the results I am assuming to receive or should I just not pursue with this venture at all since my desired results are unrealistic? Hope someone could forward me to an NSF adult member who had tried it already.

Although if it works, then I'm looking to probably do it all my life into elderly age.

susancook
02-11-2016, 02:59 PM
How much does the brace cost?
S.

flerc
02-11-2016, 06:41 PM
A very much reasonable decision Jinseeker without any doubt. Unfortunately science is still in diapers, so you may even talk with recognized anatomists and you will not know anyway what is the best that you can do, so a reasonable decision is a good decision.
I recommend you to look for a good provider, someone understanding how much important reduction in brace sure is. Clear providers don't understand that. Is a matter of common sense and intuition how much important it is.. and how much against business also is.. not everybody has enough flexibility to get a significant reduction in brace, I suppose it would not be your case. I know about some cases with some reduction in brace and progression stopped during years using the Spinecor and also a case without reduction in brace, with pain relief (so she continue using it) but progression didn't stop.
Combining Schroth with Spinecor seems to be a very good idea, but I'm not sure at all because Schroth was designed for a curve without any kind of reduction and with Spinecor you may have reduction in brace. As I know before Clear, providers recommended only sports and Gpr and it has really very much sense. Improving flexibility with Gpr you may do adjustments leading to more reduction in brace and sports would make works more your muscles which would be doing what they must to do to keep the reduction in brace. Some psychiatrist thinks that Spinecor and Gpr are incompatible but surely is not a way to deduce it.
Mamamax was if not the first, one of the first using Spinecor for adults.

Jinseeker
02-11-2016, 10:26 PM
susancook: I think about 2k usd or a little more.


I am looking at it as a long term solution though, one that I would utilize the rest of my life, if at any time I just don't see it will work or the brace wear compliance proves to be too much to bear to see myself using it for the rest of my life, then I will stop immediately. I have seen a brace fitting in this video here, https://www.youtube.com/watch?v=ASw2q5btr20

seems very complicated to get used to. Also do you have to remove the brace entirely when you are going to have a meal or will just unlatching the straps at the waist be good enough?

Yes I have heard of mamamaxx and I am hesitant to ask this member for "concrete" advice.

Pooka1
02-11-2016, 10:46 PM
Hey Jinseeker.

I think I understand your reasoning and hope it works.

I watched that video. I don't think they used any of those those measurements for anything other than to wow the patient.

And I continue to be perplexed why that brace costs thousands of dollars and not about $50.

susancook
02-12-2016, 02:45 AM
I understand your desire to investigate alternatives to surgery. I tried all kinds of treatments, but not braces preop.
Some thoughts that I have about using an alternative treatment/s:
- Does it cause harm?
- Does the tx delay whatever the final "fix" is and does this delay cause additional risk/morbidity?
- Is there evidence based research that the tx has benefit/s?
Susan

flerc
02-12-2016, 06:07 AM
Susan, which alternatives did you try?

flerc
02-12-2016, 06:35 AM
Combining Schroth with Spinecor seems to be a very good idea, but I'm not sure at all because Schroth was designed for a curve without any kind of reduction and with Spinecor you may have reduction in brace. As I know before Clear, providers recommended only sports and Gpr and it has really very much sense.

I realized I was surely wrong, probably that combination was recommended before. In a group I have read a woman doing this and she is very happy not only with pain relief, according to what she says she seems to have an even greater reduction in brace.

jackieg412
02-12-2016, 08:27 AM
Susan it is good to hear from you. But scoliosis doesn't seem to have a fix. Many surgery patients do go on without many problems but some (as you know) have many problems. However , as older patients ,we may have benefited with early intervention. Wishful thinking.

flerc
02-12-2016, 05:22 PM
But also is true that new and better options may emerge in the future..

susancook
02-14-2016, 06:31 PM
Susan, which alternatives did you try?

Chiropractor: big mistake
Massage
Acupuncture
Steroid injections
Rhizotomy
Lots of PT: 2 years, 2x per week
And maybe others that I cannot remember.

Susan

flerc
02-14-2016, 09:20 PM
Thanks Susan, is good to know what people proved and didn't work.
I always think that adults need at least a corrective method and some 'maintenance' methods as I think are all what you comment, except PT. But I know hundreds of different PT methods absolutely different, focused in absolutely different factors, based over absolutely different assumptions or facts, so you have a lot of methods having really nothing to do with each other, as Sohier has nothing to do with Gpr which in turn has nothing to do SEAS which turn has nothing to with Vojta, ABR.. And certainly some PT methods may be seen as not just only 'maintenance' methods.
Is impossible to prove with every methods and is a fact there is too much difference among different professionals of the same discipline. I know an adult with 40ļ or more very happy with her Chiropractor.
And probably just only one corrector method may not be enough, so combinations should to be proved. How many thousands of combinations may be? Surely it should be needed hundreds of lives to prove all of them. That's one of the reasons why scoliosis is something so difficult really to 'fix'. I always say we only can expect to take reasonables decisions and trust in the decision we took. I hope you be fine.

Pooka1
02-15-2016, 09:02 AM
When you see many different types of treatments, that is a clear sign none of them work. If one worked, there wouldn't be many types. Having many treatments is the hallmark of having no effective treatments.

Flerc knows someone who is happy with her chiro. Half the US is happy with denying evolution. All that shows is that many people are scientifically ignorant. No news there.

flerc
02-15-2016, 11:14 AM
Same people have a stereotyped idea about what 'work' means. It seems they don't understand that some things may works for ones and not for others. The same was shown in Martial arts. Some of them as boxing may be useless for some people according their body, but anyway extremely powerful when is mixed with other martial arts having absolutely nothing to do with it. There are hundreds or thousands of martial arts and only an ignorant may says they doesn't' work. And the best martial arts are the mixed martial arts (MMA).
They also seems to think thinks that to not be scientifically ignorant means to give up, don't look for the best, doing the same as Nasrudin. http://www.scoliosis.org/forum/showthread.php?15543-To-only-trust-in-science-is-against-common-sense
Of course no news here, but fortunately it seems that a lot of people are not hearing them.

titaniumed
02-15-2016, 09:09 PM
Jin, 25 years ago, I was around your age and decided to get a brace....It was strictly a try, and I used it mainly for protection during skiing.....It was a Copes brace, and I thought it was a good brace. It was a hard brace that did a full wrap around that had pneumatic bladders that pushed on the rib and lumbar humps......After looking at hard braces, (Spine-core wasnít around back then), it seemed simple enough, and I understood that there were no guarantees and had the money. $4000 I spent way more than that on ski equipment through the years....

I never considered it a wrong move, and it did relieve some of my lumbar pain. I guess I traded pains since pushing hard on the body can be painful....It worked well for skiing.

I think the most valuable thing out of it all was that I knew ďexactlyĒ what full fusion was going to feel like. It was like wearing football gear. All along I knew I would be fused. Every single doctor told me this including my Chiropractors.

There are not many Spine-core testimonials here. I sure wish any of them would chime in and let us know what they think. I always thought of it as a good attempt in the battle.....

I understand that many are not ready for surgery. Parents and patients. I waited 34 years till I was almost dead before submitting....and I think that it was a good move delaying and waiting since I turned on and tuned out sort of speak, (Is that what Timothy Leary said?Ē LOL) Tune in, drop out, Drop out, tune out, whatever.......in other words, do what you have to to keep your mind at ease about all of this....(Small Icon lower right corner of desktop)

Many of the ladies here that braced years ago hated it.....so, I have attached a photo that says it all for many. I donít feel this way, and still have my braces, but Iím sure it will bring a few tears.

Hang in there

Susan, I hope your feeling better

Ed

flerc
02-15-2016, 10:54 PM
They also seems to think thinks that to not be scientifically ignorant means to give up, don't look for the best, doing the same as Nasrudin. http://www.scoliosis.org/forum/showthread.php?15543-To-only-trust-in-science-is-against-common-sense




Flerc knows someone who is happy with her chiro. Half the US is happy with denying evolution. All that shows is that many people are scientifically ignorant. No news there.

These people trying to lead us to do the same that Nasrudin, even seems to think that people feeling good with non surgical methods has a primitive brain not allowing them to continue feeling pain and suffering complications after doing something not according to science (what these people understand is science) working for them.. Amazing!

flerc
02-15-2016, 11:14 PM
Certainly I have never seen these people saying scientifically ignorant to people who proved with non surgical methods and didn't work for them.

Jinseeker
02-16-2016, 04:16 AM
Jin, 25 years ago, I was around your age and decided to get a brace....It was strictly a try, and I used it mainly for protection during skiing.....It was a Copes brace, and I thought it was a good brace. It was a hard brace that did a full wrap around that had pneumatic bladders that pushed on the rib and lumbar humps......After looking at hard braces, (Spine-core wasnít around back then), it seemed simple enough, and I understood that there were no guarantees and had the money. $4000 I spent way more than that on ski equipment through the years....

I never considered it a wrong move, and it did relieve some of my lumbar pain. I guess I traded pains since pushing hard on the body can be painful....It worked well for skiing.

I think the most valuable thing out of it all was that I knew ďexactlyĒ what full fusion was going to feel like. It was like wearing football gear. All along I knew I would be fused. Every single doctor told me this including my Chiropractors.

There are not many Spine-core testimonials here. I sure wish any of them would chime in and let us know what they think. I always thought of it as a good attempt in the battle.....

I understand that many are not ready for surgery. Parents and patients. I waited 34 years till I was almost dead before submitting....and I think that it was a good move delaying and waiting since I turned on and tuned out sort of speak, (Is that what Timothy Leary said?Ē LOL) Tune in, drop out, Drop out, tune out, whatever.......in other words, do what you have to to keep your mind at ease about all of this....(Small Icon lower right corner of desktop)

Many of the ladies here that braced years ago hated it.....so, I have attached a photo that says it all for many. I donít feel this way, and still have my braces, but Iím sure it will bring a few tears.

Hang in there

Susan, I hope your feeling better

Ed

Nice insight there Ed.
However, you also had a curve that was clearly progressing, that's why it was easier to submit to surgery.
Had you not have that curve progressing so rapidly, would you still have gone through with it for pain alone? Or if you knew you had to rely on the brace your entire life to cope with the pain, would you have considered that better than surgery?

3sisters
02-16-2016, 07:49 PM
Jinseeker, have you looked into VBT? The parameters are expanding and include some adults. Not all surgery need lead to fusion; maybe it's the answer you have been waiting for.

titaniumed
02-16-2016, 10:11 PM
Nice insight there Ed.
However, you also had a curve that was clearly progressing, that's why it was easier to submit to surgery.
Had you not have that curve progressing so rapidly, would you still have gone through with it for pain alone? Or if you knew you had to rely on the brace your entire life to cope with the pain, would you have considered that better than surgery?

Thx Jin

From 50 degree curves at age 16 to 70 degree curves over 34 years is actually slow.....my decision to have surgery was all about pain from degeneration, not the curves. I didnít let the deformity bother me...(I have a lifelong friend with a wooden leg, one with MS, a brother with Kleinfelter, and my dad had ALS. Its hard for me to complain when others are worse off.

I considered bracing just one of the things that we do..... Like another tool in the tool box..... Like another bottle of aspirin in the medicine cabinet.....and we do run for the aspirin if we have a headache, even if we have not eaten....I didnít have much faith that bracing would correct my thoracic curve. I was hopeful for a slight correction in my lumbar, and that did happen, but bracing programís involve work and pain.....

What happens with all of us is that we change, and that goes for bracing. How many bracers have braced for their whole lives? I donít think I could have braced my whole life even if it worked well. Degeneration catches up with all of us, and time flies fast. It goes slow when you are young, and speeds up as you age, thatís why you need to have as much fun as possible right now. Either work hard or play hard or do both, try not to dwell too much on your scoliosis....

There are no guarantees with bracing, or surgery. Just stats. If something goes wrong with bracing, set it on fire. If something goes wrong with surgery, you have a problem.

Are you cracking your back? Are you twisting to get relief from the binding in your thoracic?

Ed

Jinseeker
02-17-2016, 04:36 AM
Thx Jin

From 50 degree curves at age 16 to 70 degree curves over 34 years is actually slow.....my decision to have surgery was all about pain from degeneration, not the curves. I didn’t let the deformity bother me...(I have a lifelong friend with a wooden leg, one with MS, a brother with Kleinfelter, and my dad had ALS. Its hard for me to complain when others are worse off.

I considered bracing just one of the things that we do..... Like another tool in the tool box..... Like another bottle of aspirin in the medicine cabinet.....and we do run for the aspirin if we have a headache, even if we have not eaten....I didn’t have much faith that bracing would correct my thoracic curve. I was hopeful for a slight correction in my lumbar, and that did happen, but bracing program’s involve work and pain.....

What happens with all of us is that we change, and that goes for bracing. How many bracers have braced for their whole lives? I don’t think I could have braced my whole life even if it worked well. Degeneration catches up with all of us, and time flies fast. It goes slow when you are young, and speeds up as you age, that’s why you need to have as much fun as possible right now. Either work hard or play hard or do both, try not to dwell too much on your scoliosis....

There are no guarantees with bracing, or surgery. Just stats. If something goes wrong with bracing, set it on fire. If something goes wrong with surgery, you have a problem.

Are you cracking your back? Are you twisting to get relief from the binding in your thoracic?

Ed

I see. You have discogenic pain, that's why the brace won't work as well as it only mostly addresses muscular related pain from not being able to hold your spine together. Did the surgery alleviate you of your pain from degenerative discs, what would you say your pain levels are now from a scale of 1-10? But since your entire spine is fused, it must be hard to move about, as you now rely most of your movement from your thighs and hips?

My curve is in the thoracic so I doubt I will ever have discogenic issues since most occur in the lumbar area exacerbated by a lumbar curve. But I do have muscular related pain especially in my thoracic concavity. I do crack my back and derotate my ribs as part of my exercise regimen. My use of a brace is more due to my sitting and working all the time, it makes me feel less compressed.

@ 3sisters: I'm not interested in VBT since it is a very new surgery. I'm not interested in any surgery without at least a 20 yr follow up, otherwise I feel like a guinea pig going into it.

burdle
02-17-2016, 05:08 AM
http://www.treatingscoliosis.com/blog/the-benefits-of-using-a-scoliosis-activity-suit


Can anyone other than the chiros who push this explain how it could actually reduce curves as claimed?

titaniumed
02-17-2016, 11:56 PM
I see. You have discogenic pain, that's why the brace won't work as well as it only mostly addresses muscular related pain from not being able to hold your spine together. Did the surgery alleviate you of your pain from degenerative discs, what would you say your pain levels are now from a scale of 1-10? But since your entire spine is fused, it must be hard to move about, as you now rely most of your movement from your thighs and hips?



Leading up to my surgeries, it would be hard to pinpoint and say ďdiscogenicĒ pain when I probably had 25 pain producing problems in my lumbar spine....Degeneration with age can create new problems living with scoliosis. Disc pain or herniationís are a new class of pain, nerve related burning and electrical typeís of pain that can be devastating. Once this happens, the old aches of the younger years almost become insignificant, and things change. Its then becomes critical, and thoughts of surgery come often. Curves donít matter anymore, we just want relief. My 1st experience with these ďalarming eventsĒ was in Jan 2002, age 43. I had a 65 degree lumbar curve with 4 CT verified herniationís in my lumbar. My L5 was smashed down into a triangle shape at that point. That was the ski jumping remodeling program. (smug face) No room for nerves due to this creates pain from other sources. Its beyond bracing at this point.....or any alternative treatment.

Spinal disc, endplate breakdown, and remodeling disorders are a HUGE flag with scoliosis and kyphosis.

My spine pain levels are 0-1. I still cant believe it and I tell my surgeon that everything from T2-Pelvis is great. The problem is with everything else. My neck is shot, and my left hand goes numb.....I am so used to pain now, I have mastered ignoring pain.

No-one can tell Iím fused.

I support non-surgical methods as tools to buy time..... (From an adult surgical candidates view)

You hang in there Seeker....

Below is my 1993 x-ray age 35.

Jinseeker
02-18-2016, 03:29 AM
you say your spine pain is 0-1 but the problem is of everything else? Do you mean like flexibility and those neck pain and left hand going numb as a result of the surgery?
I'm under the impression your pain is 0-1 only because you've mastered ignoring it rather than what it actually is. Please clarify

titaniumed
02-18-2016, 09:34 PM
you say your spine pain is 0-1 but the problem is of everything else? Do you mean like flexibility and those neck pain and left hand going numb as a result of the surgery?
I'm under the impression your pain is 0-1 only because you've mastered ignoring it rather than what it actually is. Please clarify

I am fused up to T2. Cervical herniationís C5-6, C6-7 in the neck can produce pain that radiates down the arm and the hand. My arm felt like Mike Tyson punched it, that should give you an idea of the pain levels. Oral steriodís and diclofenac was what the doctor ordered. It worked. My extruded, or protruded disc material retracted, and the pain dissipated. Herniationís can protrude and retract on and off the spinal cord and this affects pain levels. Spinal stenosis or the narrowing of the spinal cord is very painful. It drives many people into surgery.

My neck was compromised before my scoliosis surgeries, I found this out upon reading through my hospital reports. Lumbar herniationís can cause sciatica, this being hip and leg pain. My hand going numb has little to do, or nothing at all to do with my T2-Pelvis fusion. Its obvious that I have disc problems on just about all my levels. I have no scoliosis in my neck.

My spine pain in the months right before my surgeries was extremely high. It was so high that I broke my shoulder and arm in a devastating ski crash, skied out, drove home, and never bothered to go to the hospital or see a doctor. After I recovered from my scoliosis surgeries and having my shoulder repaired, this spine pain reduced since I healed, and when that happens all the other pains in the body are felt. The heavy spine pain masks everything. Thatís why I jokingly say its everything else. Benny Hill used to joke about the pains that elders have on his television show many years ago, now I know exactly what he was talking about. From a psychological standpoint, humor helps when your in pain. I avoid negativity and stress since its so damaging. Stress is worse than scoliosis. Stress kills people.

I have the old bear traps or gripping of the scar tissue in my thoracic spine. This is common in fused scoliís, and takes a lot to get used to. If I grip your wrist with my hand, there is no pain. If I hold it for hours on end, this can be fatiguing. I found its best to simply lay down for awhile if this happens. This takes many years to get used to. Scar tissue can cause problems throughout the body.....another reason to not run into any surgery. Minimally invasive surgeries are great in that you avoid all of this, and you can heal very quickly. I had 2 procedures done in this manner and healed quickly. Too bad all surgeries couldnít be done through portals.The surgeons are the ones who make these decisions.

I do not have a problem with flexibility. I know many will think that having a 2 x 4 strapped to your whole spine sounds horrible but I have adapted quite well. I bend at the hips and squat to get down to the floor. I have always tried to be positive about my scoliosis before and after my surgeries. Having a positive attitude has always helped me no matter what I was doing. (smiley face) People comment on my perfect posture. I donít have a choice anymore.

Ed

Jinseeker
04-14-2016, 07:39 AM
I considered bracing just one of the things that we do..... Like another tool in the tool box..... Like another bottle of aspirin in the medicine cabinet.....and we do run for the aspirin if we have a headache, even if we have not eaten....I didnít have much faith that bracing would correct my thoracic curve. I was hopeful for a slight correction in my lumbar, and that did happen, but bracing programís involve work and pain.....


May I ask how long you braced?
You say you got a slight correction in your lumbar, did that correction remain permanent? How long did it take until it reverted back and re progressed when out of the brace?
After months or years of wearing the brace, did you feel an improvement in overall posture, function and pain when you finally took the brace off, for let's say, a period of a couple of months without bracing? How long did those gains last from using the brace for so long before you started feeling the exact same way you originally did before you used the brace?

Sad to hear you didn't have much faith on your brace, however mine's a spinecor brace rather than a hard one and would most likely not push as hard unto the body. It's also soft and made of breathable material, I may find it an option to wear for the rest of my life.

Thanks.

rkochis
04-14-2016, 10:04 AM
Jinseeker

69 y/o with 63 degree thoracic and 48 degree lumbar. 3/4 " leg discrepancy. Active adult weekly tennis and golf.

I have known about my scoliosis since around 15 years old. I wish I had x-rays taken then so I could compare.

Aside from the rib hump, which was always mentioned when fitted for a new suit, I haven't been bothered by my condition.

Started having pain around 60 years old and visited chriros, orthos, etc....probably 20 professionals in all. I decided to research PT and tried various programs including the ones you mentioned.

Today, roughly 9 years later, I do a daily regimen consisting of what seems to work for me. I change the order so I don't get bored but basically use the same program.

As I sit in my chair with good posture, I can guarantee you I have changed my body, especially my posture. Is my spine straight, I doubt it. My plan is to get measured again in 2017. I want to give my PT another year. Oh....minimal pain...more like soreness, which I have learned to embrace.

If you have any interest in knowing what I do send me a email, otherwise, best of luck.
rkochis65@gmail.com

titaniumed
04-14-2016, 09:13 PM
Jin, I braced 23 hours per day for around 9 months, then started cutting back on the hours. I then used the brace for skiing only.

The correction was an ďin braceĒ correction in the lumbar only. It was probably about 5 degrees. I donít know how much time it took for the curve to return to its regular shape since you shouldnít shoot too many x-rays. I would imagine it returning quickly. If I had to guess, I would say 48 hours. Its hard to build up muscles on the weak side. It was a Copes brace and he used electrostim to try building up the muscles on the weak side but no matter how high a setting I would use, it just wouldnít work. There is a reason why certain muscles are weak, I have no idea why this happens. Its part of the scoliosis mystery. If your Spinecore helps with pain and is easier to wear than a full ďBattle braceĒ thatís a bonus. Some of the new CAD braces look like a huge improvement to me (from a ergonomics standpoint) I have no idea how well they work, would be nice if someone would do a testimonial...

I did have pain mainly in my lumbar and yes, while wearing the brace there would be a reduction of pain. This of course at a cost since that hard brace pushed very hard and could hurt in other areas. They are hot and you get sweaty wearing them. It is a full wrap brace, and I still have it! Some day, I will make a planter out of it.....I will probably plant a cactus in it. (smiley face)

My curves during the early 90ís were running around T60, L60. Since I was a surgical candidate all those years, there were no guarantees in bracing a 32 year old adult. Since this was during the Harrington era, I made the decision to wait as long as I could knowing that the surgical hardware and medical industry was improving. This happens everyday now, things get better. My L5 became a triangle shape, and didnít thrill too many surgeons. It wasnít looking good at all.

I went as long as I could go without surgery....and made it to age 49.

Ed

Jinseeker
04-15-2016, 03:09 AM
Thanks for comments.
rkochis: wow, you have a big curve, what made you not choose to have surgery?
Curious as well what PT have you been doing to be pain free at age 60 with curves being so high.

Titaniumed: thanks for your input. Although negative, seems like you only had pain relief while inside the brace, not out even if you braced for 9 months prior. I was expecting to get at least a month or two of a better conditioned spine pain free while out of the brace before reverting back to my "pre-braced" state, seems like that is just wishful thinking now.

rkochis
04-15-2016, 10:20 AM
When I was diagnosed by a GP in early 60's there was no discussion about solutions. The GP merely stated that the rib hump was caused by scoliosis. I really didn't have any issues until I turned 60. I would say, in retrospect, that the biggest issue was the short left leg (3/4"). In my amateur opinion, this caused the scoliosis. When I had hip replacement 2 years ago (I think due to the misalignment) the ortho added 3/8" to the femur and I wear a lift in the left shoe. Hopefully, you have determined whether or not you have LLD.

So as I approach 70, I am all about alignment and symmetry. I work very hard at it, but over time it has become part of who I am. The 2 programs that were the main source for my hybrid program are Egoscue and SLM yoga. Egoscue states..." the bones will follow the muscles" (muscles include tendons and ligaments) You can contact me for more details rkochis65@gmail.com

I wish I had started at your age. I doubt that my curves (and rotation) would be what they are today.

Jinseeker
04-15-2016, 10:57 AM
Thanks for those treatments, I have heard of them before.
Did yours progress throughout the years?

spitfire
04-15-2016, 01:23 PM
I wore a Boston brace in high school and had X-rays in the brace, immediately after removal of the brace, and several hours later. My lumbar curve measured 6 degrees less in the brace and held that correction for a few hours out of brace. With 4-6 hours it reverted back to the original measurement.

I realize that a lot has changed with bracing over the last 30 years, but I don't have much faith that a brace will reduce a curve and hold the reduction upon removal.

rkochis
04-15-2016, 01:25 PM
I understand why you asked why I did not have surgery and your last question about the curve progression over time. Our situations have some similarities. I have had 2 spinal x-rays in my lifetime. First x-ray on 01-22-2010 showing "right convex lower thoracic curve measuring 62.9 degrees between the upper aspect of T12 in the upper aspect of T4" and "47.6 degree left convex
upward recurved in the lumbar spine between the upper aspect of T12 and the upper aspect of L5". A followup x-ray on 07/03/2013 showed no significant change either way.

Therefore, in answer to your last question, I regrettably did not have x-rays at intervals (other than above x-rays) so I cannot provide any information. I look forward to my planned x-rays in 2017 to see if my PT has had any influence on curves.

flerc
05-22-2016, 02:52 PM
Rkochis, did you never think in Torso Rotation Machine?