Spinecor Adult Users

[concerned dad]

aterry
I have a couple of comments to your above post that I just made in your earlier thread.
also, regarding ulcers
2005 Nobel Prize in Physiology or Medicine for establishing that bacteria cause stomach ulcers ..... The pair’s claims provoked a fierce backlash from the medical establishment, which held to the dogma that ulcers were brought on by stress and lifestyle, and could not be cured.

and last years Nobel Prize went to

Harald zur Hausen went against current dogma and postulated that oncogenic human papilloma virus (HPV) caused cervical cancer, the second most common cancer among women.

My question (and I am serious) are all the claims made by folks here about bracing adults Dogma or is there scientific proof that it DOES NOT work.

It seems that there is a belief here (almost like a religion) that anything short of surgery is not going to help scoliosis. I would imagine a statement like

there is no way ANY brace will correct a curve in a skeletally mature adult. It's impossible. In-brace corrections are not permanent.

would be difficult to prove. I'm not saying it is incorrect. It just sounds a bit like dogma/faith.

and as Sharon likes to say

faith is merely a way of pretending to know

And I did see Linda's link about why bracing an adult will not work. I guess I would classify that as evidence that it will not work. Not proof.
Is there more evidence out there (other than a lack of evidence)?
How would you go about proving this assertion?

or is it just faith?

[LindaRacine]

I would like to hear more from you mamamax. I have an appointment for my daughter with Dr Deutchman but am thinking of cancelling it. It's all just very confusing. But the more people we here from the better informed we'll all be. I'm thinking of the doctor (can't remember his name) who discovered the bacterium that causes stomach ulcers. The entire profession wrote him off as a kook until he proved his hypothesis. Someday--how long? who knows? someone will make progress through scoliosis research. From what I've read on this forum there seems to have been little progress. Just some technical improvements in surgery; some technical improvement in bracing; some promise with the stapling; not much, if any, prevention; and nothing in any area that could be called a breakthrough. But I think we all need hope so I want to hear as much as I can.

You need to understand that we're talking about a skeletally mature adult, not an skeletally immature child. There are a LOT of other threads about using the Spinecor brace in children.

--Linda

[concerned dad]

Linda, Her daughter is 16 and in pain. I guessed she was interested in the pain relieving aspect of the brace more than arresting curve progression.

I dont think many (any?) SRS doctors would prescribe a brace for a 16 year old girl with a 20 (or 26?) degree curve. But hopefully they would check out the pain aspect seriously.

I responded to her original thread here

[Pooka1]

There is a difference between:

1. having no evidence that something has worked

and

2. having evidence that something can't work.

In re H. pylori causing some stomach ulcers, nobody proved that bacteria couldn't cause ulcers. There was simply no evidence in hand to show that it did. And maybe there was little evidence that it looked promising, I don't know. But the key thing is nobody dispositively disproved that bacteria can cause stomach ulcers.

In contrast, there are some things for which we have evidence that dispositively disproves something. In fact this is the main way science moves forward.... by disproving wrong things. What is left standing is provisionally correct until we gather more evidence and if we have positive evidence for it and if it captures the most data already in hand.

For example, the earth being a few thousand years old has been positively disproved for a few hundred years. It can't be right for dozens and dozens if not hundreds and hundreds of reasons. Now when we ask what the true age of the earth is and how we know it, we need positive evidence, in this case in the form of independent methods done by independent researchers from all over the world that all converge on a number (~4.55 billion years). We scale our acceptance of this number to the amount of independent data; In the case of the age of the earth, we know this so well as to elevate this to being a "FACT." Just like evolution as defined by change over time is a "FACT."

As I understand it, non-surgical methods to correct a mature spine appreciably have been dispositively ruled out on known biological/medical principles. In other words, it has been disproven. It is not the case that we simply lack positive evidence. In fact we can explain the lack of positive evidence to date IN THIS CASE by the "fact" that it has been scientifically disproven.

That's how I see it anyway.

[concerned dad]

I don’t think it is valid to draw a comparison between non surgical treatments of adult scoliosis and creation science. (Almost sounds like a debating tactic that a creation scientist would use, shame on you )

If someone asks “How do we know the earth is 4.5 billion years old” we can reply with tons and tons of hard scientific evidence.

If someone asks “How do we know you can not correct an adult scoliotic curve without surgery”, well, so far, all I’ve seen is Linda’s one page explanation and Karen’s french paper. Can we do better than that?

The rest of the world pursue conservative treatments (read SOSORT) while here in the states it is primarily surgery. Are the Europeans idiots? Are they gullible? Do they lack good scientific education? I dunno, maybe.

I’m sorry, but when you say

non-surgical methods to correct a mature spine appreciably have been dispositively ruled out on known biological/medical principles.

It sure sounds good, but without the evidence, it is no more than a faith statement.

Now, I could give you evidence from SOSORT papers that contradict what you say. We could rip the papers apart for not being rigorous enough. But critiquing the other view without substantiating your own does not necessarily prove anything (another creation science tactic I might add - I know this gets your goat when I say it too hope you read it with a smile on your face).

Even Lori Dolan, Ms Evidence based medicine herself says
I have read a lot of the literature coming out of Europe concerning physical therapy and bracing. I commend the dedication of these clinicians to conservative treatment and I look forward to reading results of large-scale controlled trials from their institutions. We need as many people as possible working on this question in order to build a solid body of evidence.

She doesn’t say they are wasting their time. It is a little more toned down than the No Way No How response people get here. I still have to go with my “Not likely, but good luck”.

[Pooka1]

Look, if I'm wrong about changes in adult spined being positively ruled out by evidence we already have in hand then I am wrong. But that is certainly my understanding of the situation at the moment. Of course this isn't my field so there is that.

As I understand it, there is a complete vacuum of rigorous evidence for it but as learned in the H. pylori case, that doesn't mean it can't be true. I think it is the case that adult scoliositic vertbrae above a certain angle are wedge-shaped. If true, that will necessarily limit any non-surgical correction.

But we must also be mindful that people have been trying for a non-surgical correction for decades without success. And while again that is not definitive, it isn't chopped liver either. I mean it isn't like folks were looking for a bacterium in stomach ulcers... I'm guessing the first person who looked found them. The breakthrough was thinking to look for them I'm betting. So clearly that is NOT the case with bracing or PT on adult curves which have been the subject of decades of study.

And as I posted before hoping someone would comment, bracing and PT can't both work as they have diametrically opposite modes of action. One might eventually be shown to work or the other but not both.

In re Dolan, I don't know what she really thinks based on any printed comment. One has to maintain a certain level of decorum among colleagues who one might run into at scientific meetings and such.

Last, if my post had even the slightest hint of wingnut thinking, I apologize all over the place.

[Pooka1]

I don’t think it is valid to draw a comparison between non surgical treatments of adult scoliosis and creation science. (Almost sounds like a debating tactic that a creation scientist would use, shame on you )

Look, if I have to reach for the most widely held counterfactual idea out there, I'm always going to reach for young earth creationism (as we have seen). I don't think it is intellectually dishonest to pick that example for that reason. In contrast, all young earth creationists are either lying or ignorant BY DEFINITION.

Big difference there, okay?

[concerned dad]

Last, if my post had even the slightest hint of wingnut thinking, I apologize all over the place.

I was just having some fun with you. Thanks for being a good sport. We need to lighten up the tone of this thread.

I guess my point is, all I have to go on right now regarding the topic are Pam's, Karens, Linda's and your assertions. So my view of the topic is based on Dogma.

I was looking for more information/evidence/proof of the underlying claim.

[Pooka1]

I was just having some fun with you. Thanks for being a good sport. We need to lighten up the tone of this thread.

Agreed! I have tried at various times to inject some levity. That's why I mentioned Ti Ed at one point, hoping he would do that.

I guess my point is, all I have to go on right now regarding the topic are Pam's, Karens, Linda's and your assertions. So my view of the topic is based on Dogma.

I was looking for more information/evidence/proof of the underlying claim.

I see that. I don't have much more info than you have. But just like I don't have the evidence in hand for how we know for a FACT bamboo is the largest grass in the world or how we know for a FACT Syrian hamsters have no limit for alcohol, I have never heard about evidence against those things and am aware of plenty of positive evidence for them. That is precisely NOT the case with non-surgical correction of adult spines.

[aterry]

Pooka, could you talk more about bracing and PT being opposite? I think I know what you mean but I'd like to hear more from you.

Also, your point, that the first person to think of the bacterium (for ulcers) may have been the one who proved it, is well taken, and I guess that's what I mean by not wanting to shut down hope. Where are the out-of-the box ideas coming from for scoliosis? All I hear is surgery (and little tiny mentions of stapling). And from what I've read surgery has been a big improvement for lots of people on this board. But hoping for choices in addition to surgery doesn't only have to be hope for braces; or for PT; or for electronic stimulations; (or whatever) but hope for something. I find the research thread very interesting--even though I don't understand most of it.

[mamamax]

Are you a young earth creationist?

You can admit that here because others have (incredibly).

Any counterfactual position will work in this context... young earth creationism, astrology, alchemy, Repubican, etc.

Hi Sharon

Thanks for the well worded support. ok - am i a young earth creationist? Not sure, will have to research - certainly not young, that is a fact. If i was one however, i'm certain i would have no difficulty saying so and would probably have no trouble writing a thesis justifying the existence (which in my imagination would receive an A+)

I normally vote Democratic but consider myself Independent ... when i feel moved to engage in politics. Good word - counterfactual .. making note.

[mamamax]

Seriously Mamamax, I don't think you need to fret so much. There really doesn't appear to be anyone here who is trying to run you off, just people with a lot of experience with scoliosis who want to try to help others by making sure that the facts about alternative methods and bracing (not just Spinecor) are made clear. They do the same for surgery, so it all balances out. It's exciting that you've heard that the Spinecor might help you to permanently straighten your spine, but there isn't any scientific evidence that this can happen - YET. Maybe this will change, it would be fantastic if it does! But at the moment, sadly this evidence doesn't exist.

I think, if you know a bunch of people who are seeing actual permanent correction of their adult scoliosis by using the Spinecor, you should all get together and contact Spinecor themselves so they can run clinical trials. If they could do that, and then publish proof that this works, it would be absolutely wonderful news for all of us.

I'm sure you'll understand that this forum and others like it do quite often get people who try to tout unproven cures for scoliosis, so it's natural for people to be sceptical and ask questions, that's all It really doesn't read as though anyone has anything personal against you, so please don't worry.

Toni xx

Thanks Toni

Do have some connections in the publishing world as a published author and as an editor - was corresponding (off forum) this evening with someone i may approach the subject with - working in conjunction with Spincor manufacturer who is conducting clinical trials to my knowledge .. actually i've agreed to participate in one with my provider. Oh God, wonder who will jump all over that? You have advised me more than once to not worry .... so, think i wont! You are dead right about that balance thing ... excellent observation and bty - do like the way your write. Hopefully by now, to most - it is obvious i'm one of the good guys

xx&oo

[LindaRacine]

I don’t think it is valid to draw a comparison between non surgical treatments of adult scoliosis and creation science. (Almost sounds like a debating tactic that a creation scientist would use, shame on you )

If someone asks “How do we know the earth is 4.5 billion years old” we can reply with tons and tons of hard scientific evidence.

If someone asks “How do we know you can not correct an adult scoliotic curve without surgery”, well, so far, all I’ve seen is Linda’s one page explanation and Karen’s french paper. Can we do better than that?

The rest of the world pursue conservative treatments (read SOSORT) while here in the states it is primarily surgery. Are the Europeans idiots? Are they gullible? Do they lack good scientific education? I dunno, maybe.

I’m sorry, but when you say


It sure sounds good, but without the evidence, it is no more than a faith statement.

Now, I could give you evidence from SOSORT papers that contradict what you say. We could rip the papers apart for not being rigorous enough. But critiquing the other view without substantiating your own does not necessarily prove anything (another creation science tactic I might add - I know this gets your goat when I say it too hope you read it with a smile on your face).

Even Lori Dolan, Ms Evidence based medicine herself says
I have read a lot of the literature coming out of Europe concerning physical therapy and bracing. I commend the dedication of these clinicians to conservative treatment and I look forward to reading results of large-scale controlled trials from their institutions. We need as many people as possible working on this question in order to build a solid body of evidence.

She doesn’t say they are wasting their time. It is a little more toned down than the No Way No How response people get here. I still have to go with my “Not likely, but good luck”.

CD...

As far as I can tell, there isn't a single study that shows PERMANENT curve reduction in skeletally mature adults. Since Schroth has been around for so long, I would think that if there were proof, we would have seen it by now.

Regards,
Linda

[mamamax]

I would like to hear more from you mamamax. I have an appointment for my daughter with Dr Deutchman but am thinking of cancelling it. It's all just very confusing. But the more people we here from the better informed we'll all be. I'm thinking of the doctor (can't remember his name) who discovered the bacterium that causes stomach ulcers. The entire profession wrote him off as a kook until he proved his hypothesis. Someday--how long? who knows? someone will make progress through scoliosis research. From what I've read on this forum there seems to have been little progress. Just some technical improvements in surgery; some technical improvement in bracing; some promise with the stapling; not much, if any, prevention; and nothing in any area that could be called a breakthrough. But I think we all need hope so I want to hear as much as I can.

Hi Terri - thank you, i too would like to hear more from you. Dr. Lamantia from Dr. Deutchman's practice is my provider. Your best source for all questions is Dr. Deutchman - think you will find that he will be glad to spend as much time as necessary to answer all your questions (via telephone if necessary) regarding treatment goals. Think you will find him conservative in respect to treatment goals - he does not promise the sky, for no one can, for any treatment. Someone promises you the sky - run, do not walk, in the opposite direction. Also believe this office has treated the largest number of both adolescent and adult patients in the US. Good track record and lots of experience there - Deutchman's practice also has professional affiliation with the inventors in Canada and is always traveling to many parts of the world gathering information on both scoliosis and the brace (as you have probably seen on his web site). So - i would say you have made a good choice in provider should you chose to continue. Good to remember things like that bacterium doctor - definitely. And you are correct - in the world at large, little research has been conducted in viable treatments outside of surgery. Until the Canadian cracker jacks that is - and they themselves are well respected surgeons .. who better to research an alternative (they knowing the body so well).

As a parent myself i understand your position - and yes it is a confusing one to be in. There appear to be many parents here using Spinecor for their children with a great deal of success for the most part (actually reviewed the adolescent forum as part of my research before making my decision - so there is good information aplenty there, as well as here, for all of us to share). As you are aware - no treatment of any kind has guarantees, and all cases are uniquely individual. Sharing with these parents may help you in your decision. There are many things to consider and in the end, this is a family decision that must be made by you as a family, regardless of what anyone else has to say (including myself). As i understand it, Deutchman will not accept all patients (like the Canadian doctors), so most likely you can feel confident that he would not treat your daughter if there were extenuating circumstances that would compromise ethical treatment. He is certified with the Spinecor manufacturer and that would be part of protocol (verified at the Manufacturer's web site). Easy to verify via phone call to his office.

Treatment protocol differs between child and adult - so your best source of information is going to be a Spinecor certified provider and in my personal opinion - it would be best to have an Ortho you trust to work together with your provider (i'm doing that myself). The brace retrains atrophied muscles in the adult, so it is like a sort of PT while wearing. I can vouch for that - can feel it. How it performs (on muscles) in children, i imagine that is much the same - again - ask the doc.

My personal opinion - that whether as parents or for ourselves, after gathering all information and weighing all facts - one must also rely a bit on intuition - as did Albert Einstein (only the well recognized greatest mind of the 20th century), who credited (in his final analysis) all his work to intuition (or that still, small, silent voice within that is guided by a thing that cannot be explained). That is contained in the Book - The quotable Einstein. Wonder who will jump all over that??

You are so right - we all need to hear as much as we can, and we all need Hope - humanity is nothing without it. I'm seeing a lot of debate here about Faith - hope - evidence, etc and so on. Reminded that impossible things are happening every day.

Good luck - no, best of luck (we need that too) in your searching and in your final treatment decision. Thank you for a most noteworthy post. Please keep me informed.

[mamamax]

Hey - this thread started by myself has achieved the dubious distinction of becoming ... the most active thread in NSF Non Surgical adult bracing history since 3/30/2003

Impressive ... prize??

And to think i once felt lonely