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flerc
02-22-2013, 11:03 AM
.. and that all the other health professionals are criminals, non surgical treatments don´t works, cannot helps noone to avoid surgery, people believing in them are desperate/stupid.. and as I said you here
Not use this thread to do your work (your reason to be here). Try to be respectful. Tkare has a serious problem and need this thread for help. She not needs to be convinced for you about anything.
I replied here stop to dirtying other threads in order to make your work.

Certainly is very difficult for me to discuss with people without a logic/rational mind, but I’ll do another effort again.. I hope it will be the last; I have not time to waste as I feel I’m doing and ever did discussing about this with you.
I’m not absolutely sure about what ‘Evidence’ means for you.
'Evidence' for me is a proof or something showing a fact. A fact is something that happened or is happening or will happens. A statement asserting a fact is true.
So, if you are saying that There is no evidence any conservative treatment has prevented any surgery, you should to prove that NEVER worked in any case in the world or you should to prove that cannot works in just only one case, that is, giving a logical demonstration about it. You never did that as I know.
Do you are confusing ‘evidence’ with well known and published cases? It will not surprise me, because is simple for people without a mathematical background to confuse a proof with only clues. If you really are honest in all what you say, this is what surely is happening with you.
But who knows? If this is the case.. Prove it! Prove me that real cases and well known/published cases are the same. But please, try to know first what ‘prove’ really means.


Convincing is the worst!
Yes and doing it as you do all the time without any proof in the biggest forum of the world is really unacceptable. Some people may be right in saying it is fishy.

Pooka1
02-22-2013, 11:19 AM
.I have not time to waste .

Apparently you do.

You've given me lots of advice lately. How's that going? Do you think it's working or what?

flerc
02-22-2013, 11:33 AM
Apparently you do.


I means that I should to use my time in something useful, but I not allways do what I should. Is a fact!



You've given me lots of advice lately. How's that going? Do you think it's working or what?



No I don't think that, the last advice was about to understand what a word means before using it and seems you are not following it.

jrnyc
02-22-2013, 02:04 PM
Sharon...thank you for your intelligent comments and your knowledge and information...science will always move forward
with facts....
i know i am not the only one on forum who appreciates the knowledge
you contribute...
and i will not debate that with anyone on forum or elsewhere...
i have more important things to do than waste my time with those
debates!

jess

mariaf
02-22-2013, 03:07 PM
i know i am not the only one on forum who appreciates the knowledge you contribute...jess

Correct, Jess.

I, too, always appreciate Sharon's knowledge and her willingness to state the facts, even knowing sometimes that what she says might not be what everyone wants to hear and that she may take heat for it. (One of my favorite sayings is "the world has enough YES people").

I believe her heart is in the right place, wanting what is best for these children and in some cases, saving their parents from being taken in financially, only to be heartbroken later on when these false claims are shown to be just that.

flerc
02-22-2013, 03:44 PM
Unfortuantely there are people in the world assuming that all thinking different has stupid behaviours.. like wanting to fight or wanting to hear what they wants instead of the true.

Good disciples, but far the teacher yet..

rohrer01
02-22-2013, 04:09 PM
Flerc,
I think I understand where you are coming from. Unfortunately, the kind of practitioners that you often talk about do not want to be a part of the scientific community and do not publish their findings. I have heard only bad things about CLEAR. Chiros try to be a part of the scientific community and they do have their place for some things. But I honestly don't think that their training "teaches" them how to keep track of and publish accurate and meaningful data.

It's only logical to follow the advice of people that have tested things over and over and have accurate data to show how things work. In any "treatment" you are going to get cases that look miraculous or curative. I can say, because my son had no treatment and his scoliosis resolved on its own, that "no treatment" is the best course for everyone. That would be a false statement even though it appeared to cure my son. The fact is, no matter what I had done with his treatment, he would have probably been "cured" because he had a case of self-resolving JIS. So his case would have been a success story for whichever practitioner I took him to. So, yes, there will be success stories for any kind of treatment. That doesn't mean that it was that particular treatment that worked UNLESS it could be repeated over and over with predictable results.

I'm not saying that no one should try anything else and go straight to surgery. But there are a lot of scam artists out there that feed off of and get rich from the fears of others. Buyer beware.

mariaf
02-22-2013, 04:40 PM
I can say, because my son had no treatment and his scoliosis resolved on its own, that "no treatment" is the best course for everyone. That would be a false statement even though it appeared to cure my son. The fact is, no matter what I had done with his treatment, he would have probably been "cured" because he had a case of self-resolving JIS. So his case would have been a success story for whichever practitioner I took him to. So, yes, there will be success stories for any kind of treatment. That doesn't mean that it was that particular treatment that worked UNLESS it could be repeated over and over with predictable results.

Very well put.

That's a great explanation of why a single anecdotal success story (or even a few) is not evidence that a particular treatment works.

Pooka1
02-22-2013, 05:09 PM
You know, all the faulty, anti-scientific thinking out there can be very amusing when it comes to the age of the earth, the shape of the earth, the factuality of evolution, etc. etc. etc. But those same faulty thought patterns are applied by adults to either themselves or their children it suddenly isn't funny any more. It suddenly matters whether or not you are evidence-based. If you aren't evidence-driven, it just all runs together.

The US and some other countries have a demonstrably abysmal record on teaching scientific thinking. The rubber is hitting the road when some serious medical condition pops up. It scares me.

flerc
02-23-2013, 01:54 AM
Flerc,
I think I understand where you are coming from.

Sorry Rohrer, it not seems that for me.



Unfortunately, the kind of practitioners that you often talk about do not want to be a part of the scientific community and do not publish their findings. I have heard only bad things about CLEAR. Chiros try to be a part of the scientific community and they do have their place for some things. But I honestly don't think that their training "teaches" them how to keep track of and publish accurate and meaningful data.


Certainly I'm not sure which are the practitioners that I often talk about and less sure if none of them not published their findings and even less sure that Clear may be one of those practiocioners I often talk about..I only remember to said to a mother asking for them that they contacted me with a mother who said me that her daughter had a reduction of 10º and also that all I read from them has much sense for me. It hasn't sense for you? Of course it not imply that works.. I also said that I believe that a Clear Dr. gave a conference in a SOSORT event.. it's not true? I'm not sure.



It's only logical to follow the advice of people that have tested things over and over and have accurate data to show how things work.


Of course.. do you know someone doing that, working with non surgical treatments? In what kind of cases? I believe I cannot say I don't know noone, even in serious cases, but even supposing you cannot find noone doing that at least with cases as yours, does it necessarily implies that non surgical treatments cannot work for you as some people here are trying to convince at everyone reading this forum?



In any "treatment" you are going to get cases that look miraculous or curative. I can say, because my son had no treatment and his scoliosis resolved on its own, that "no treatment" is the best course for everyone. That would be a false statement even though it appeared to cure my son. The fact is, no matter what I had done with his treatment, he would have probably been "cured" because he had a case of self-resolving JIS. So his case would have been a success story for whichever practitioner I took him to. So, yes, there will be success stories for any kind of treatment.


Good to know the scoliosis is solved for your son. How many degrees did he has? Sure not so many. Of course I know about spontaneous cures, but never in big curves.



That doesn't mean that it was that particular treatment that worked


Do you believe that I may think a particular method works because was useful in insignificant or mild curves?



UNLESS it could be repeated over and over with predictable results.


Depending on what it means for you, you may say that none method really works. Is what I said in a large thread. But it not means that none method never REALLY worked.



I'm not saying that no one should try anything else and go straight to surgery.
Why not, if non surgical methods not work? They not work because surgeons are not saying that may work and they never worked in just only one case. Only someone stupid, ignorant or desperate may try with something else.
You know some people are saying that, the first step is convincing that never worked in just only one case.



But there are a lot of scam artists out there that feed off of and get rich from the fears of others. Buyer beware.

Yes, but not all the non surgical professionals as that people are trying to convince at everyone.

flerc
02-23-2013, 02:26 AM
The US and some other countries have a demonstrably abysmal record on teaching scientific thinking.

I'm sure scientific thinking only may be learned in a Scientific University. Otherwise you may have people confusing evidence with well known evidence and then doing hard and dangerous claims.

flerc
02-23-2013, 07:20 AM
Very well put.

That's a great explanation of why a single anecdotal success story (or even a few) is not evidence that a particular treatment works.

Sure, of course all of those few cases were spontaneous reversions. Fortunately you are here and know so much about what every method may do or not so you know that they never can really work.

flerc
02-23-2013, 07:58 AM
In any "treatment" you are going to get cases that look miraculous or curative. I can say, because my son had no treatment and his scoliosis resolved on its own, that "no treatment" is the best course for everyone. That would be a false statement even though it appeared to cure my son. The fact is, no matter what I had done with his treatment, he would have probably been "cured" because he had a case of self-resolving JIS. So his case would have been a success story for whichever practitioner I took him to. So, yes, there will be success stories for any kind of treatment. That doesn't mean that it was that particular treatment that worked UNLESS it could be repeated over and over with predictable results.


Certainly the same may be said about scolioscore. If the score is low and the curve not reaches "surgical range", is because so few progress to that stage. If Score is high, and surgery is done.. well, you'll never know if was right or not.

mariaf
02-23-2013, 08:15 AM
Sure, of course all of those few cases were spontaneous reversions. Fortunately you are here and know so much about what every method may do or not so you know that they never can really work.

Where did I say that all of those few cases were spontaneous reversions?

You seem insistent on not listening to what anyone else is saying. Re-read my post stating that what Rohrer said made perfect sense and explains why one or two anecdotal cases mean nothing. I never said "one or two anecdotal cases of spontaneous reversion". YOU said that.

Please stop putting words in my mouth. I have been nothing but polite thus far and yet you find the need to be sarcastic, while in the same breath you want to slap Sharon's hand for what she posts. You are not making a good case for yourself.

Pooka1
02-23-2013, 08:52 AM
I have been nothing but polite thus far and yet you find the need to be sarcastic, while in the same breath you want to slap Sharon's hand for what she posts. You are not making a good case for yourself.

People have to be actually sitting at the big table of evidence-driven thought to be able to reach me to slap me. I am still waiting for Flerc to join me at the big table. That's why I asked him earlier if he thought any of his admonitions to me were having any effect on me. Clearly they are not. That said, I would love to be edified by Flerc or anyone who ponies up evidence to the big table.

flerc
02-23-2013, 10:20 AM
Where did I say that all of those few cases were spontaneous reversions?

You seem insistent on not listening to what anyone else is saying. Re-read my post stating that what Rohrer said made perfect sense and explains why one or two anecdotal cases mean nothing. I never said "one or two anecdotal cases of spontaneous reversion". YOU said that.

Please stop putting words in my mouth. I have been nothing but polite thus far and yet you find the need to be sarcastic, while in the same breath you want to slap Sharon's hand for what she posts. You are not making a good case for yourself.

Certainly it seems you agree with all that Pooka1 say (just only see her signature) and Rohrer was talking about spontaneous reversions. It seemed enough evidence for me to suppose you was suggesting that for any particular treatment, any success story was not a real cure. But certainly, all what both you said not necessarily imply this was your intention.
So if you were not suggesting that any particular method, never REALLY worked, accept please my sincere apologies.
Also take in mind please that some confused parent, not knowing yet what really scoliosis means, may also misinterpret what we say if we are not clear enough .

flerc
02-23-2013, 11:55 AM
People have to be actually sitting at the big table of evidence-driven thought to be able to reach me to slap me. I am still waiting for Flerc to join me at the big table. That's why I asked him earlier if he thought any of his admonitions to me were having any effect on me. Clearly they are not. That said, I would love to be edified by Flerc or anyone who ponies up evidence to the big table.

Certainly I believe you will continue doing your work here, that's why I said I was wasting my time.
Of course you know the effect that may have in someone new in scoliosis, to read in the biggest forum of the world something like 'according my limited understanding, I conclude that you should to do what your surgeon said you, because although there is not any kind of guarantees, I think that nobody may give you a best advice. since I believe that nobody has a greater knowledge' and what a very different impact if he read something as 'people proving with things that were not indicated by their surgeon, as alternative treatments are fool, ignorant or desperates'.

You know that is bad to do categorical assertions here, except you are absolutely sure are facts and you can prove it. So YOU must to present evidence of all that kind of assertions you ever and ever does when you detected that someone is saying something that at least in some subtle way may be against to what the official western medical community say.
So I'm waiting the evidence about what you repeated and repeated... hundreds, thousands of times about there is not evidence (that is, if you look for it you'll never find it because not exists) that something not indicated by the community have worked.
If you was not wanting to say that, you should to reedit your posts. If you reedit only those saying that, you may finish before next century. Hurry up!

Pooka1
02-23-2013, 12:13 PM
that's why I said I was wasting my time.

We agree on that.

Anyone who isn't asking for evidence from alternative treatment purveyors is wasting their time and likely their money also. I blame the science education and the non-scientific forces in society for devaluing science and evidence.

flerc
02-23-2013, 04:02 PM
We agree on that.

Anyone who isn't asking for evidence from alternative treatment purveyors is wasting their time and likely their money also.


Who are you to say that someone is wasting their time or money if not does what you say?


We agree on that.
I blame the science education and the non-scientific forces in society for devaluing science and evidence.

This is exactly what you not stop to do. I'm not sure whom to blame.. surely the owners of this forum to allow someone demanding a blind faith in one community and saying that people without that faith not understand what Science is. If you would have a basic idea about what Science is, you should to know that blind faith has nothing to do with it... and of course also not has to do with doing categorical assertion without proving them.
So.. I continue waiting for the evidence that never an alternative method worked.

Pooka1
02-23-2013, 04:18 PM
So.. I continue waiting for the evidence that never an alternative method worked.

You will wait forever because you are asking the wrong question.

You have to ask the right questions to get anywhere in this game.

rohrer01
02-23-2013, 04:28 PM
Sorry Rohrer, it not seems that for me.

Sure I do. You are saying that surgery can't possibly be the only option and there must be other therapies that can work. I will tell you that surgeons do not just jump to surgery. They try many other alternatives first and use surgery as a last option. I was sent to a dietician, physical therapist, put into traction, given electrical muscular stimulation, and fitted for a shoe lift as a teen. Now I receive injections to break up the muscle spasms, Botox to weaken overly contracted muscles and steroid injections to reduce inflammation. When I went to see my surgeon last week, they gave me a questionnaire that asked what treatments I've already tried. The list was for about 10 to 15 therapies including things like chiropractic, yoga, accupuncture, bracing, massage etc. Not all of these are considered "mainstream" therapies, yet surgeons still consider these therapies as legitimate treatments.

My secondary curve actually improved 5* from the exercising that I've been doing over the last year. It went from the high 30's to the low 30's. As we have learned, 30* is NOT protective against progression. So, yes, other therapies can help.



Certainly I'm not sure which are the practitioners that I often talk about and less sure if none of them not published their findings and even less sure that Clear may be one of those practiocioners I often talk about..
I'm referring to the many alternative therapies that you have looked into and mentioned throughout the last couple of years that I've been on the forum.




Of course.. do you know someone doing that, working with non surgical treatments? In what kind of cases? I believe I cannot say I don't know noone, even in serious cases, but even supposing you cannot find noone doing that at least with cases as yours, does it necessarily implies that non surgical treatments cannot work for you as some people here are trying to convince at everyone reading this forum?
No. I'm saying that they don't collect the proper data to present it as evidence to prove that their way works. A lot of alternative therapists are not interested in collecting data, let alone present it to the scientific community.

For the sake of argument, let's say a tribal shaman does his ritualistic "healing" on people in his tribe for a certain disease. This shaman has a very high success rate and most people with this particular illness get better. Is he collecting data to prove that his method works? No. He will probably tell any outsider that the "spirits" did the healing. Then an outside "scientist" is allowed in to see what the shaman is doing. He sees that the shaman has a concoction of herbs. So the scientists runs a bunch of tests on these particular herbs and finds physical evidence as to why this remedy works on this particular disease. The chemicals from these herbs may be incorporated into a "modern" drug for the cure or treatment of a particular ailment. This DOES happen. It happened in the case of willow bark and the discovery of aspirin to help with pain, fever and inflammation.




Good to know the scoliosis is solved for your son. How many degrees did he has? Sure not so many. Of course I know about spontaneous cures, but never in big curves.
He was close to 20* at about 8 years old.




Do you believe that I may think a particular method works because was useful in insignificant or mild curves?
No. My intention is not to question your intelligence. I gave my son as an example because anyone could use his case and argue that because it was "caught early" their treatment worked.




Depending on what it means for you, you may say that none method really works. Is what I said in a large thread. But it not means that none method never REALLY worked.
Again, I think that all people are asking for here is PROOF that a particular treatment works predictably. A random case here and there is not proof.



Why not, if non surgical methods not work? They not work because surgeons are not saying that may work and they never worked in just only one case. Only someone stupid, ignorant or desperate may try with something else.
You know some people are saying that, the first step is convincing that never worked in just only one case.
If a non-surgical method worked, people would be all over it. I don't think that the majority of humankind is pro-surgery for everything. People invest much money into therapies to avoid surgery. They do it because they are trying to avoid surgery. Some will reason that if it comes down to having surgery, they at least know that they have tried everything else first and surgery was a last resort. This idea is comforting to many people.

However, the conflicting idea on this forum is, "Why subject a child to treatments that don't work, only to end up putting them through surgery in the long run?" This ideology is very strong here because so many of these alternate therapies are extremely painful to the child both physically and emotionally. Look at the case of Kat (the young girl who frequently posts here). She's pretty upset that her parents wouldn't let her have the surgery until her curve got so bad that she had to have a longer fusion with less correction than if they had listened to the doctor/surgeon to begin with. That girl went through torture with a brace that was totally ineffective. THAT'S what a lot of this boils down to.

rohrer01
02-23-2013, 04:45 PM
So.. I continue waiting for the evidence that never an alternative method worked.

The statement needs to say, "I continue waiting for the evidence that alternative methods do work."

There are impossible things that scientists don't waste time and money on. One of them is researching methods to prove that they don't work. You could never get a volunteer to sign up for a study in which someone was trying to prove something doesn't work. There are infinite things that don't work and finite things that do work. Scientist, by default, prove that certain methods don't work in their quest to find things that DO work.

NO ONE would EVER get funding for a project thats main objective is to show that a particular treatment will fail UNLESS there are published article/s that say the treatment does work. On this point, the researchers had better have some pretty strong data to suggest that their hypothesis is right AND they had better have a better solution to offer.

flerc
02-23-2013, 09:25 PM
The statement needs to say, "I continue waiting for the evidence that alternative methods do work."

No, the statement must to say exactly what it said: I continue waiting for the evidence that never an alternative method worked.




There are impossible things that scientists don't waste time and money on. One of them is researching methods to prove that they don't work. You could never get a volunteer to sign up for a study in which someone was trying to prove something doesn't work. There are infinite things that don't work and finite things that do work. Scientist, by default, prove that certain methods don't work in their quest to find things that DO work.

NO ONE would EVER get funding for a project thats main objective is to show that a particular treatment will fail UNLESS there are published article/s that say the treatment does work. On this point, the researchers had better have some pretty strong data to suggest that their hypothesis is right AND they had better have a better solution to offer.

You should to explain that to Pooka1, not to me.



There is no evidence any conservative treatment has prevented any surgery.


This is one of the last ocurrences when I googled "There is no evidence" Pooka1 with this site as domain.. if you think is not good to represent what I means, you have other hundreds to choice someone better.
But certainly is good enough for me. Certainly she is saying in other words 'There is no evidence any non surgical treatment worked'.. so, you should understand why I was asking what I asked.

Certainly, she is right in using one or other statement to say the same. May you say a method realy worked if it not was useful to avoid a surgery? In any case you should to talk about 'Complementary' instead of 'Alternative' methods. It is like saying that Martial Arts are great self defense practices, but only to fight against weaker, older and lighter people..
I hope you understand now why I continue waiting for the evidence about what this forum not stop to proclaim to the world.

rohrer01
02-24-2013, 12:04 AM
No, the statement must to say exactly what it said: I continue waiting for the evidence that never an alternative method worked.

No researcher does work on this premise. So you will never get a proof because you are asking the impossible. There are probably an infinite number of treatments with absolutely zero data collection. IF you found an alternative treatment that worked on a large curve, then you would have to be able to reproduce those results on other patients in a predictable way in order to prove that it was the treatment that worked.

Have you tried any alternative (for lack of a better word) treatments with your daughter and had success in reducing her curve by a significant amount?

rohrer01
02-24-2013, 12:18 AM
You should to explain that to Pooka1, not to me.





Sharon already knows this. That is why she told you that you would never get an answer, because you have to ask the right questions.

flerc
02-24-2013, 03:03 AM
I'll try with an example. I'll give you the correct answer for me.

Suppose your friend says all the time there is no evidence about any martial artist defeating someone heavier, younger and stronger.
Does he is only saying that he does not know about just only one case (A) or he is saying nobody knows about one case? (B)
B

Suppose some asociation giving anabolic to people needing a self defense capacity says as your friend that there is no evidence.
Does your friend is right promoting what the asociation is doing because he know they are saying to don't know about any evidence?
No

Would it have any sense to demand him to prove that certainly is not any evidence, even if it would be hard to him or to the asociation to prove it?
Yes

May your friend be so sure that there is not any evidence even he knows the asociation cannot prove it?
No

Would be right that the asociation and your friend says only they don't know about any evidence instead of saying there is no evidence?
Yes

Would not it sounds different for people not knowing so much about those issues and trusting so much in the asociation?
Yes.

Would be logic if your friend says that martial arts are unuseful because (as he ever says) there is no evidence..
No

flerc
02-24-2013, 09:26 AM
You must to be careful about what you say in a forum. Mainly if it is the bigest of the world. If you like to does categorical assertions when you have philosophic discusions while taking a coffe in a bar with your friends, nobody may blame you about anything even if those assertions has not any sense or cannot be proven, but is absolutely different if you make it here.

If someone here is doing a categorical assertions, mainly if never stop to do it, then must to prove it or reedit it..
If you are justifying some categorical assertions done by other here without proving it, is the same as if you do it or even worse.
So you must to prove now that there is not evidence about just only one case in the world of a non surgical treatment avoiding a surgery.

You are not having a funny talk with your friends. Thousands of people around the world may believe that your categorical assertion is true and it may lead them to take an extremely important and probably irreversible decision.

Pooka1
02-24-2013, 09:32 AM
You are asking the wrong questions. Scientists don't waste time disproving the boatloads of nonsense out there that lay people (i.e., non surgeons) dream up. If an alternative treatment purveyor thinks their treatment works then they need to pony up the evidence. They never do. There's a reason for that.

Look how hard it is to show bracing and PT work. And that is with people who are trained in doing research.

Now map that on to people with no training in research or science and who are making money from these treatments.

The reason these alternative treatments persist is because they actually don't need evidence. Clear is technically correct that they don't need evidence. The reason is they are dealing with people who are scared and don't want the surgery. And they don't understand the surgical literature. Chiros have no training in surgery and so shouldn't be talking about it. But they do all the time. It's sufficient just to not want surgery for people to waste thousands of dollars on treatments that have never been shown to work. Remember Hope404? She documented her daughter's treatment with Clear that didn't help her daughter at all. If these alternative treatments worked we would know it by now. Even Schroth is still a fringe treatment in Germany and surgery goes on as ever. Ask yourself why.

flerc
02-24-2013, 09:56 AM
Is this a proof for you about what you says:

There is no evidence any conservative treatment has prevented any surgery.
Fortunately science argues in a different way. Otherwise we would be reading validations like this:

all numbers are <= 5000
Proof:
1 <5000
340<5000
.
.
4000<5000
Then assertion is true.

rohrer01
02-24-2013, 04:15 PM
Is this a proof for you about what you says:
Fortunately science argues in a different way. Otherwise we would be reading validations like this:

all numbers are <= 5000
Proof:
1 <5000
340<5000
.
.
4000<5000
Then assertion is true.

Science argues in this way: All numbers are not <= 5000
Proof:
K <= 5000, where K <= 5000
therefore the subset of numbers from {K = negative infinity to 5000} satisfies this statement.
So if your K value falls at or below 5000, then this solution will work for you.

Are you arguing for the sake of argument or is there a therapy out there that you know works? If you are withholding this information then YOU are the one doing the great injustice to the people reading this forum. Thus, I ask you again: Have you found a therapy that has reduced your daughter's curve to a significant degree that she is willing to undergo? If you continue to not answer the question or the answer is no, then why are you arguing science?

The forum has a waiver that states:
"Nonetheless, this is an open public forum, and we caution every member of this community to use common sense and judgment in determining how to use the contacts and information from this center. NSF provides this service as informational only, and does not endorse or take responsibility for any person, statement, or item contained within this center. So, we welcome you to proceed enthusiastically, yet cautiously, in finding the information, and connections you are looking for to make informed healthcare decisions regarding scoliosis and related spinal deformities. To get started, simply click the link below to enter the forum."

Bold mine.


With that in mind, the only idiotic people out there are the ones who base their decisions solely on what people post on this forum.

No disrespect intended, Flerc. It just seems that you are arguing for the sake of arguing without any meaningful information to give. You seem to want to rip the scientific method apart and replace it with nothing. It's not a perfect world.

There are innumerable treatment options for scoliosis, thus the non-surgical area of the forum. Surgery is a treatment "option" that results in the straightest spines. Surgeons do not guarantee a pain free outcome. The risks of this surgery are great and include death. People are made aware of this before they undergo this procedure. Yes, you are right, surgery is a treatment option that is undoable. But, then again, so are other options that allow the spine to twist so severely that the most skilled physician can not save the person. That happens, too. Surgery for severe scoliosis saves more lives than it takes. But as with any option, buyer beware, you "may" end up in more pain. That's why we all need to make informed decisions when it comes to our own healthcare and that of our children.

flerc
02-24-2013, 05:07 PM
With that in mind, the only idiotic people out there are the ones who base their decisions solely on what people post on this forum.


I cannot believe you may say something like this..
Certainly it has not also any sense for me to try to explain you how something that we heard, realy seeming true for us, may lead us to take some decision, a difficult decision we were not sure to take up to heard it, but sure it not care you. You should to know that, you should to know what is to deal with complex situations.. no, I don't know what you should to know or not, I don't know you, I believed that at least in some sense but I was wrong

flerc
02-24-2013, 05:37 PM
If I insisted now also to you to prove the categorical assertions you make or support, is thinking in people confused, not knowing the difference between a ligament and a tendon, as me when I heard for first time about the scoliosis and I have had to take a an extremely difficult decision without enough information.. ever is not enough, but the worst is to have not the minimal knowledge in order to judge the information we are desperating trying to get.. and I'm sure there are many people around the world in that complex situation.. and at least not all of them idiots.. and certainly if it would be the case, it would be even more important to no not confuse them.

So if I said that non surgical treatments may work, is because I really believe it as I explained why, hundreds of times before and I never said in a categorical way that realy works, as you assert or support the contrary. And the best way to convince about it is saying that never worked.
So, you is who must to prove your categorical assertions.said or supported by you.
If I know or not about a succesful case, or why I doubt about your assertion, will not help you to prove what you must to prove.

flerc
02-24-2013, 05:58 PM
how something that we heard, realy seeming true for us, may lead us to take some decision

Specially if it is said in the name of science.. sure the waiver is not so useful.

flerc
02-24-2013, 08:37 PM
Are you arguing for the sake of argument or is there a therapy out there that you know works?

I'm not arguing, I'm demanding!. And in fact, it have not any sense what you ask if you are saying that none never worked.



Science argues in this way: All numbers are not <= 5000
Proof:
K <= 5000, where K <= 5000
therefore the subset of numbers from {K = negative infinite to 5000} satisfies this statement.
So if your K value falls at or below 5000, then this solution will work for you.


Certainly I doubt if you sometime understood something I have said. It's obvious I was refering that a simple enumeration of cases complying your assertion is not a proof of anything. If Clear fault in one case, Schroth in others.. Chiropractors in other more (do you want to add some more?) it not prove your assertion about never an alternative method worked.

flerc
02-24-2013, 09:33 PM
The forum has a waiver that states:
"Nonetheless, this is an open public forum, and we caution every member of this community to use common sense and judgment in determining how to use the contacts and information from this center. NSF provides this service as informational only, and does not endorse or take responsibility for any person, statement, or item contained within this center. So, we welcome you to proceed enthusiastically, yet cautiously, in finding the information, and connections you are looking for to make informed healthcare decisions regarding scoliosis and related spinal deformities. To get started, simply click the link below to enter the forum."


Under a legal point of view I suppose this forum is right, but under an ethical one.. with people not stopping in saying for ever and ever that only (official western) medicine works and in order to supporting that, all the time does categorical assertions without proving.. It would be so much honest a waiver like this:
we caution about comments done by ignorant people believing in alternative options to those given by the OWMC (Official Western Medical Community). Please not be fool and not pay attention to those kind of non sense comments and take in mind that alternative medicine never worked in other sense that just only a complement to the OWMC solutions.

Pooka1
02-24-2013, 10:11 PM
It could say:

BE SKEPTICAL! DEMAND EVIDENCE OF EFFICACY!

REMEMBER! Not wanting surgery does not magically make conservative or alternative treatments automatically exist.

Bonus question... Why aren't there more Martha Hawes' out there? (Answer will be provided for those who are stumped.)

rohrer01
02-24-2013, 10:42 PM
I cannot believe you may say something like this..
Certainly it has not also any sense for me to try to explain you how something that we heard, realy seeming true for us, may lead us to take some decision, a difficult decision we were not sure to take up to heard it, but sure it not care you. You should to know that, you should to know what is to deal with complex situations.. no, I don't know what you should to know or not, I don't know you, I believed that at least in some sense but I was wrong

Flerc,
That's a personal statement against me. We've been talking on here for quite awhile and you are one of my favorites to talk to. You are getting frustrated and taking it out on me. That's not fair.

I DO care about people. This forum is full of good advice. It's also full of quackery. The intelligent person needs to sort through the information and do what they think is best. I've never promoted one treatment over another. I've had so many kinds of alternative treatment for my scoliosis that I can't even count it all. In fact, surgery is one treatment that I have NOT had. I have learned l lot about different treatments by coming here. Before I came here I had never even heard of the Schroth method. I am a person where alternative treatments are all I have in my bag. Even IF I wanted surgery, there is no way for me to get it. I've had several doctors tell me I need it and several tell me that I don't need it. For me it all boils down to money IF I wanted to have the surgery. I can't afford it and my insurance company will not pay for me to see a doctor who agrees that I would benefit from surgery. My current doctor says no, so that's what I'm stuck with - and maybe that's a GOOD thing for me.

I'm simply stating the obvious. People shouldn't believe everything they read on a forum. They should take away the valuable information and use it to discuss things with their own healthcare practitioner. It would be idiotic to do otherwise.

flerc
02-24-2013, 11:07 PM
Bonus question... Why aren't there more Martha Hawes' out there? (Answer will be provided for those who are stumped.)

If this assertion is true


There is no evidence any conservative treatment has prevented any surgery. could not be surprising if certainly there are not more Martha Hawes since there never was just only one.. or conservative treatment had nothing to do with her case or it was not a surgical (according surgeon's classification) one.
The proof of the quoted assertion should to be provided for who did it. You should to demand it!

rohrer01
02-24-2013, 11:26 PM
If I insisted now also to you to prove the categorical assertions you make or support, is thinking in people confused, not knowing the difference between a ligament and a tendon, as me when I heard for first time about the scoliosis and I have had to take a an extremely difficult decision without enough information.. ever is not enough, but the worst is to have not the minimal knowledge in order to judge the information we are desperating trying to get.. and I'm sure there are many people around the world in that complex situation.. and at least not all of them idiots.. and certainly if it would be the case, it would be even more important to no not confuse them.

So if I said that non surgical treatments may work, is because I really believe it as I explained why, hundreds of times before and I never said in a categorical way that realy works, as you assert or support the contrary. And the best way to convince about it is saying that never worked.
So, you is who must to prove your categorical assertions.said or supported by you.
If I know or not about a succesful case, or why I doubt about your assertion, will not help you to prove what you must to prove.

At this point I don't know if you are talking to me or Sharon.

As for me, I don't make any categorical assertions. The only assertions I can make are based on MY OWN personal experience with scoliosis and the treatments that I have had. So here they are:

Chiropractic didn't work for me. Myofascial release did not work for me. Muscle stimulation did not work for me. Traction did not work for me. Accupuncture did work for some severe muscle pain I was having in my erector spinae muscles. Trigger point injections give me about 40% relief for my pain. Botox gives me about 50% relief from my pain after an initial increase for a couple of weeks. The shoe lift had no effect on my curve, so did not work. An intensive exercise program for the last nine months "may" be contributed to a 5* decrease in my lower curve, so maybe it worked, but it could have been my posture during the x-ray. Follow up x-rays showing continued improvement will be needed to "prove" that the exercise is helping with curve reduction. Deep Muscle Massage did not work for me. A sacroilliac belt did not work for me for pain. Epidural injections have worked for my lower back pain. Physical therapy of many different kinds did not affect my curve so did not work for me. I'm probably missing some other therapies that I've tried and they have not worked either. None of the above therapies could categorically be attributed to having any positive impact on my scoliosis at this time.

You are free to believe that ALL or SOME of these therapies have worked since my spine is stable. But there's no way to prove that the natural history of MY scoliosis would have been any different absent these therapies. That would be a "belief" not based on scientific evidence. I have not tried Schroth or CLEAR. I've considered going to a Schroth clinic since there is one near where I live. But, based on what I've read on the forum, I chose not to go. That doesn't mean that I base all of my decisions on what forum members say. It means that I sort through the evidence of the efficacy of certain treatments and make my own decisions about my treatment. Does that mean that I will never try Schroth? No, it doesn't. It's just that it is VERY expensive and I don't think that it will, at this point in time, be worth going into debt for a treatment that will have little or no effect on MY curve type.

You still failed to mention if any treatment has worked on your daughter. If it has, I would honestly like to know. What have YOU tried? What has worked and what has not? Why won't you answer these questions? I am an open book to the therapies that I've tried.

Tamztom is having wonderful success with his daughters JIS/Chiari 1 malformation. He must be doing something right. He has, thus far, avoided surgery for HIS daughter. What will be the final outcome in her case? We don't know, ...yet. He is documenting EVERYTHING he does. Will his methods work for others? No one knows. Will he publish his findings? I hope so. However, on that point, his success is not PROOF that his methods will work on everyone. It might be enough to get the scientific community to take a harder look at what he's doing, though. He came to the forum seeking insight and took what HE felt was important and made his own plan of attack. Had he listened to the doctors, his daughter would have had at least two surgeries by now. So far she's had none. It's an amazing case!

I don't like petty arguments for the sake of arguing a point. You are here because your daughter has this horrible affliction. Try some of the stuff you have mentioned on the forum with your daughter if you are convinced that a therapy will work. I realize she's of age, but if you have evidence that is convincing enough, then she might be willing to try it.

flerc
02-24-2013, 11:28 PM
BE SKEPTICAL! DEMAND EVIDENCE OF EFFICACY!


Also in assertions (veracity) mainly when are categoricals like this:



There is no evidence any conservative treatment has prevented any surgery

Or other (literaly) hundreds similar you may find in this forum.

flerc
02-24-2013, 11:36 PM
At this point I don't know if you are talking to me or Sharon.

As for me, I don't make any categorical assertions.

To you. You are supporting hers categorical assertions

rohrer01
02-24-2013, 11:44 PM
Flerc,

I know it feels like engaging an argument is the only way to counter it, but I'd strongly disagree (and I study online communities for a living). You're diluting your own information by doing this constant compare and contrast. If you want to see how to just create a clear storyline without muddying it with all this back and forth, go and look at Dingo's threads. In the start it's nothing but endless argument, and then he gets smart and just spends his time talking about what he wants to talk about, and the storyline becomes very clear. Anyone can drop in and find good info, because he simply does not got engaged with the back and forth, and so it just drops off the thread.

Not only is his storyline clear, but he now spends 100% of his time posting about what interests him, instead of just knee-jerking responding to the same old arguments.

The internet if chock full of awful information. Really, just awful. You are *never* going to protect parents from running into it. All you can do is create a clear *alternate* storyline that they can follow. These kinds of discussions are not that storyline. Figure out what it is you want parents to know, and just make it easy for them to find it. Start a topic, post to it regularly, talk about only what interests you, and don't waste time responding to rebuttals. Make them go somewhere else for a foothold.

My advice for the day :)

I know I'm not Flerc, but thank you for that. I tend to get sucked into these debates because I am trying to defuse a situation. I absolutely hate seeing people butting heads and not getting along. I'm afraid I only made things worse. And on taking your advice, I do have my "own" thread where I post things that pretty much pertain only to me. There are a few takers that read it. But it's mostly a place where I can go to put down what I'm doing at the moment and how I feel about it.

Thanks again!

rohrer01
02-24-2013, 11:47 PM
To you. You are supporting hers categorical assertions

No, actually, I'm not. I'm trying to explain how the scientific community works in regards to research and why. On this point I do agree with Sharon. However, I just reminded you of a case that "was" surgical and is being treated non-surgically. Read Tamztom's thread. It's amazing!

I'm adding this to my above statement. I don't know what categorical assertions I'm supposedly supporting, so I can't dogmatically say, "I'm not supporting them." Sharon and I don't see eye to eye on everything as well. However, she is a researcher and she does know how the scientific method works. I've also worked in research during my undergrad years. You don't get funding for trying to prove something isn't going to work. Also, you are very vague about what therapies you are talking about. Are you talking about ALL non-surgical therapies?

flerc
02-25-2013, 12:38 AM
No, actually, I'm not.

Yes, actually you are. Read your previous posts. Not only because this, but how many times did you said that has not any sense to demand a proof about her categorical assertion 'There is no evidence any conservative treatment has prevented any surgery'? If you think so because it cannot be proved is her problem not mine and instead of saying that for me you should have to said her that she should not do at least in this forum such kind of assertions. This is what I'm doing, as everybody here should to do.

flerc
02-25-2013, 12:57 AM
Are you talking about ALL non-surgical therapies?
Yes, I suppose she means that (any conservative treatment)

rohrer01
02-25-2013, 01:20 AM
Yes, actually you are. Read your previous posts. Not only because this, but how many times did you said that has not any sense to demand a proof about her categorical assertion 'There is no evidence any conservative treatment has prevented any surgery'? If you think so because it cannot be proved is her problem not mine and instead of saying that for me you should have to said her that she should not do at least in this forum such kind of assertions. This is what I'm doing, as everybody here should to do.

Flerc,
I know what I posted and why. Sharon's statement, "There is no evidence any conservative treatment has prevented any surgery" may well be a true statement even though it may not be true. It doesn't mean that I agree with the statement. Look at Tamztom's thread. He appears to be helping his daughter nonsurgically. However, from a scientific standpoint ONE CASE is not enough "evidence". To prove something, as I have stated, it needs to be predictably reproducible. Tom's method may only work on HIS daughter, or it may only work on kids with JIS before their growth spurt, etc... Those are the variables that researchers would sort out before applying Tom's "therapy" to every child out there with idiopathic scoliosis. It's the way the scientific community works. There are rules that have to be followed in order to make a legitimate claim that a particular therapy works. You CAN'T prove that "any" conservative will work or fail. It's too vague. For example:
1. taking a bath every day will cure scoliosis.
2. eating a vegan diet will cure scoliosis.
3. standing under a full moon for three consecutive months will cure scoliosis.
.
.
.
n. standing on one foot while jumping up and down will cure scoliosis.

My point here is that there are an infinite number of things that can be "claimed" to cure scoliosis. Researchers need to investigate specific claims. All of these ridiculous claims I just made up would fall under the category of "conservative treatment". You know as well as I do that these things are bogus. However, there may be people out there that would believe that stuff. The claims that researchers are interested in researching have to meet certain criteria. That is WHY you can't say, "Prove that any alternative treatment could not help scoliosis." or however you worded it. It's too broad, and that's exactly why I defended Sharon's statement. You have to be specific about the treatment. You have to collect meaningful data to support the claim. Then you have to be able to reproduce your findings on a large random sample. Then you have to do it again. Sharon's argument was that non-mainstream practitioners do not collect such data and can not back up their claims. I have to agree that if someone is not willing to collect the data on successes and failures, then there may be something to hide OR they just aren't interested in fitting into the scientific community. Either way, if a treatment is not studied and doesn't meet the criteria for "proof", then it can't be endorsed by institutions such as Medical Associations. It doesn't mean that the treatment never works. It means that there is no "evidence" that it works.

Anyway, Flerc, I'm going to leave it at that. You misunderstand me and that's okay. I'm trained in the sciences and am just trying to explain how it works. I'm sorry if I offended you by not defending you to Sharon. In this case, SCIENTIFICALLY, her statement was correct whether it is true or false. If I thought surgery were my only solution, I would be fighting to have it done and I'm not.

I don't know why you are avoiding the topic of treatments for your daughter. It makes me question why the topic of your thread upsets you so, especially if you are not employing any alternative methods in trying to get your daughter well. I wish her all the best.

Pooka1
02-25-2013, 06:59 AM
I don't know why you are avoiding the topic of treatments for your daughter. It makes me question why the topic of your thread upsets you so, especially if you are not employing any alternative methods in trying to get your daughter well. I wish her all the best.

Fer,

Can you please tell us all the treatments your daughter has tried and what was the result in terms of changes to her Cobb angle? You have mentioned so many and I just wonder which of those she has tried. That would be a far better contribution to this forum than abstractly defending the idea of alternative treatments as you have done to no effect.

I am hoping this is not going to be like that Clear chiro whose own daughter would not do the Clear protocol. That kid sounds appropriately skeptical to me! Maybe she will become a research scientist. :-)

Thanks in advance.

Sharon

flerc
02-25-2013, 11:59 AM
I don't know why you are avoiding the topic of treatments for your daughter. It makes me question why the topic of your thread upsets you so, especially if you are not employing any alternative methods in trying to get your daughter well. I wish her all the best.

If you believe something as Pooka1 is suggesting that I don’t want to talk about that because I want to promote that some alternatives methods really works although not worked for me or something like that, I have nothing to talk with you any more, as I have not with her. It not imply I will not continue demanding what I’m demanding in this thread, where I will not talk about nothing not having to do with my demand, and of course what I believe or not about alternative treatments my knowledge or experiences with them and so on has absolutely nothing to do. This remember me the dark times of my country when people denounced of doing atrocities never was investigated, but yes who did the denouncement (in fact tortured and killed).

It really surprise me very much you don't know what I believe about alternative and medical treatments, what means for me 'Works', 'Evidence', the rol of science and so on.. I'm almost sure you participated here http://www.scoliosis.org/forum/showthread.php?11620-Changes-in-scoliosis-treatment-due-to-Scoliscore
Certainly It makes me question why the topic of this thread not upsets also you, someone with a science background. Regardless if alternatives methods worked or not with you or what you may believes of them, if someone is trying to convince that are unuseful, but in a non scientist/logic/rational but confusing way, it should to upsets you too.
But it seems you think that only idiots may be influenced by that work, so not matter you. We think and I may say we feel in a very different way.

flerc
02-25-2013, 02:13 PM
"There is no evidence any conservative treatment has prevented any surgery" may well be a true statement even though it may not be true.
SCIENTIFICALLY, her statement was correct whether it is true or false.


But if you use it (mainly in a non scientist/philosophical forum) as proof in order to proclaim to the world in a categorical way that those treatments are useless (and all the implications as stupid/ignorant people, dishonest professionals..) because if not, would be evidence that worked sometime.. All this logic construction is RIGHT for you?
If A certainly (or almost) implies B but I cannot prove if A is true or not, may I be absolutely sure about the veracity of B? that is, may I proclaimed the veracity of B and all his implications? I don’t think that. I believe that someone doing or supporting it has not a rational mind or is trying to convince others in any way.

rohrer01
02-25-2013, 02:27 PM
If you believe something as Pooka1 is suggesting that I don’t want to talk about that because I want to promote that some alternatives methods really works although not worked for me or something like that, I have nothing to talk with you any more, as I have not with her. It not imply I will not continue demanding what I’m demanding in this thread, where I will not talk about nothing not having to do with my demand, and of course what I believe or not about alternative treatments my knowledge or experiences with them and so on has absolutely nothing to do. This remember me the dark times of my country when people denounced of doing atrocities never was investigated, but yes who did the denouncement (in fact tortured and killed).

It really surprise me very much you don't know what I believe about alternative and medical treatments, what means for me 'Works', 'Evidence', the rol of science and so on.. I'm almost sure you participated here http://www.scoliosis.org/forum/showthread.php?11620-Changes-in-scoliosis-treatment-due-to-Scoliscore
Certainly It makes me question why the topic of this thread not upsets also you, someone with a science background. Regardless if alternatives methods worked or not with you or what you may believes of them, if someone is trying to convince that are unuseful, but in a non scientist/logic/rational but confusing way, it should to upsets you too.
But it seems you think that only idiots may be influenced by that work, so not matter you. We think and I may say we feel in a very different way.

Wow, Flerc. You can stop with the personal attacks. You have every right to post about alternative treatments on this forum, just as others have the right to post about scientific discoveries. My "beliefs" are irrelevant. Science is based on provable facts. There are some major issues that Sharon and I have to agree to disagree on. I'm not attacking her personally because we think differently. Where do you get the notion that I think everyone is an idiot who tries an alternative treatment? Why would you even say that to me? I said that I think a person would be an idiot to rely solely on what they read on a public forum to make their medical decisions. You and I are more different than I thought. It's not because we have both tried alternative therapies, but because of the way you are attacking me for things that I have not said or done, because you think I'm somehow in cahoots with Sharon in some elaborate scheme to undermine all therapies except surgery. I will remind you again, I HAVE NOT HAD SURGERY. I HAVE ONLY TRIED ALTERNATIVE THERAPIES. Yes, you can be done discussing things with me. You clearly don't understand a word I have said here and choose to attack me because I tried to explain the scientific method to you. Your demand will never be met here because it is impossible to prove. I directed you to a thread that I thought you would find very useful. It seems to be a nonsurgical success story, so far... That's about all the "proof" I can give you.

I ask you about your daughter because I have been very forthright about what treatments I have had. I have been very open about my own children's scoliosis. You, on the other hand, post many things about alternative therapies but never say if you have tried them with your daughter or what the outcome has been. But sometimes, no matter how "logical" a therapy seems to be, it just doesn't work. The human body is so much more complex than any human knows, so there will always be "unknown" factors that throw a wrench in our way of thinking. But you have answered my question about your daughter. What you have tried has obviously not worked or else you would have been shouting it to the world. If a therapy failed, why would you not want to share that? This would be helpful information for other parents so that they could know in advance that the therapy might not work for them. Then if they still want to proceed, it wouldn't be based on an unfounded promise like the ones that some chiropractors make, giving people false hope.

Not only did I participate in the Scoliscore thread, I participated in the study. YES, they have my DNA in their data base. I will participate in studies that I believe can end up helping other people. I do not see the harm in having a simple test done to try to predict whether a child is at a high risk for progression. A high score doesn't mean that the children will get surgery for subsurgical curves. It just means that they will be watched more closely. For the kids that score low, it saves them a ton of radiation exposure since they will need fewer x-rays.

As far as nonsurgical therapies go, the ONLY help I have received from any of them so far is some reduction in pain, not curve magnitude. Exercise "may" possibly have helped with a 5* curve reduction in my smaller curve. But posture could have played a factor in that. My next set of x-rays will tell more of the story as I have no intention of quitting the exercise.

I feel bad that you are so hostile toward me. I have really enjoyed some of our chats over the years. Just because people don't agree on every issue is no reason to be uncivil. I have no idea how you relate the atrocities in your country to this topic. There have been atrocities throughout the world. It all boils down to greed, anger, and intolerance (not agreeing to disagree). It's too bad, really

rohrer01
02-25-2013, 02:39 PM
But if you use it (mainly in a non scientist/philosophical forum) as proof in order to proclaim to the world in a categorical way that those treatments are useless (and all the implications as stupid/ignorant people, dishonest professionals..) because if not, would be evidence that worked sometime.. All this logic construction is RIGHT for you?
If A certainly (or almost) implies B but I cannot prove if A is true or not, may I be absolutely sure about the veracity of B? that is, may I proclaimed the veracity of B and all his implications? I don’t think that. I believe that someone doing or supporting it has not a rational mind or is trying to convince others in any way.

If you can't prove A, then B is irrelevant. That's the whole point. That's WHY reproducible results are NECESSARY. Then if that is the case, then A is valid and B follows.

Pooka1
02-25-2013, 03:18 PM
Fer,

You have no dog in this fight. Why are you fighting????

flerc
02-25-2013, 03:22 PM
If you can't prove A, then B is irrelevant.
Irrelevant? sorry I do not understand.

Pooka1
02-25-2013, 05:14 PM
Rohrer is pretty much the only line we have into biology in this sandbox now that Pnuttro has left.

She is a CRITICAL player in terms of putting out many, many folk science and pseudoscience fires as they relate to biology. (We have a few others who can put out the straight illogical fires.)

I am very grateful Rohrer is a member here as, if she left, we would be much less armed against nonsense. I have some biology but no where near as much as Rohrer.

rohrer01
02-25-2013, 07:19 PM
Irrelevant? sorry I do not understand.

I know.
.
.
.
.

rohrer01
02-25-2013, 07:22 PM
Rohrer is pretty much the only line we have into biology in this sandbox now that Pnuttro has left.

She is a CRITICAL player in terms of putting out many, many folk science and pseudoscience fires as they relate to biology. (We have a few others who can put out the straight illogical fires.)

I am very grateful Rohrer is a member here as, if she left, we would be much less armed against nonsense. I have some biology but no where near as much as Rohrer.

Thank you, Sharon, but I don't feel that qualified. However, I'm not going anywhere.
=)

flerc
02-26-2013, 12:41 AM
If you can't prove A, then B is irrelevant.


Irrelevant? sorry I do not understand.

When I asked you this, I was in the work and I have not read yet your previous post.

Yes, it was right what I felt when I read what you said about idiots making medical decisions only thinking in what they read in a forum.. and if decision rely in other source, what they read here cannot weigh in their decision? Really a strange thought. Surely I should had not 'attacked' you after that, but I didn’t was talking any more with the great Rorher I knew, I’ll miss so much.. something really very sad for me. But anyway is a good news to know surgery is not necessary for you,( regardless if some of those methods had to do or not) and I keep pretty memories of our past chats.

But show must go on. Ok, suppose as you are doing I don’t know anything about Logic, Maths, science.. and suppose is true all in the really very large list that may be done with all you said in this thread about me.
If I not understood what you was saying, maybe because I thought I was talking with someone I knew and then I made many assumptions about what you could be trying to say or not. So tell me now what you means with irrelevant. Do you are refering to the Truth tables? If A is false, then not matter if B is false or true, the implication is true? Of course if this is the point, it has not any sense to say that, since what is relevant in this thread is if B is true, not the implication (A=>B) Inot discussed it.

Nobody with a minimal training in logic may not understand what I said:
If A implies B but I don’t know if A is true or not, then I cannot be sure if B is true or not. Except for instance I know C=>B and I can prove C. So is someone proclaim B as true only because A=>B, although not knowing if A is true or not, then has not a rational mind or have some particular interest.
Of course A is ‘There is no evidence...' and B is ‘Alternative methods are a fraud’, not 'Alternative methods don’t work'. I said also in this thread about I also don’t think that ant current particular method really ‘works’

'Either way, if a treatment is not studied and doesn't meet the criteria for "proof", then it can't be endorsed by institutions such as Medical Associations. It doesn't mean that the treatment never works. It means that there is no "evidence" that it works.'

We were talking about evidence that at least one time it worked, not that it works.
So it has not any sense what you were saying in order to say is wrong what I'm saying here.

flerc
02-26-2013, 01:28 AM
It seems to be a nonsurgical success story, so far... That's about all the "proof" I can give you.


Then in this forum we may assume that A is false?.. it seems she should to look for other argument to 'prove' what she proclaim.. how many post she must to delete or reedite..

rohrer01
02-26-2013, 03:41 AM
Yes, it was right what I felt when I read what you said about idiots making medical decisions only thinking in what they read in a forum.. and if decision rely in other source, what they read here cannot weigh in their decision? Really a strange thought. Surely I should had not 'attacked' you after that, but I didn’t was talking any more with the great Rorher I knew, I’ll miss so much.. something really very sad for me. But anyway is a good news to know surgery is not necessary for you,( regardless if some of those methods had to do or not) and I keep pretty memories of our past chats.

I'll take that as an apology and apology accepted. I am the same Rohrer I have always been.
I will address what I said about "idiots" one more time. I said that anyone who makes healthcare decisions solely on the basis of information from a public forum is an idiot. I stand by that.

What I DID NOT say is, anyone who uses a public forum to weigh into their healthcare decision is an idiot. EVERYONE here uses information they find to help them make decisions, just not solely from information they find here. I've found a ton of helpful information here that I have weighed into my healthcare decisions along with input from my healthcare providers AND what makes sense to me personally.

Do you see the difference in the two statements? Is it a language barrier? If what you thought were true, we would ALL be idiots for using the forum.


Ok, suppose as you are doing I don’t know anything about Logic, Maths, science.. and suppose is true all in the really very large list that may be done with all you said in this thread about me.
If I not understood what you was saying, maybe because I thought I was talking with someone I knew and then I made many assumptions about what you could be trying to say or not. So tell me now what you means with irrelevant. Do you are refering to the Truth tables? If A is false, then not matter if B is false or true, the implication is true? Of course if this is the point, it has not any sense to say that, since what is relevant in this thread is if B is true, not the implication (A=>B) Inot discussed it.
Nobody with a minimal training in logic may not understand what I said:
If A implies B but I don’t know if A is true or not, then I cannot be sure if B is true or not. Except for instance I know C=>B and I can prove C. So is someone proclaim B as true only because A=>B, although not knowing if A is true or not, then has not a rational mind or have some particular interest.
Of course A is ‘There is no evidence...' and B is ‘Alternative methods are a fraud’, not 'Alternative methods don’t work'. I said also in this thread about I also don’t think that ant current particular method really ‘works’


This is a logic question. Math logic works the same as logic in general. Have you been educated in this? I made the assumption that you had when I replied. You are assigning the wrong values to A and B. I will try to be more clear:

A represents a particular treatment.
B represents a positive outcome (in our discussion a curve reduction of a large degree).

(A==>B) ONLY if A is true. Otherwise A and B are independent of each other. In a logic statement like (A==>B), (B=/=>A), meaning B does not lead to A or imply anything about A. It only goes one direction; from A leading to B and not the other way around. So if you have used a particular treatment, A, that is unproven (would be considered false until proven) and get B (positive outcome), then in this case you must PROVE that (A==>B) by PROVING that A is true. Otherwise B is independent of A which makes B irrelevant to A and you can not positively say that (A==>B) because A is false (ambiguous, not proven). In order to prove A, then A has to consistently and predictably lead to B. That's why one or two good outcomes, B's, in relation to a particular treatment, A, aren't enough. A has to lead to B every time for A to be true.

The above reason is why I used my son's case as an example. He had a positive outcome, B, without any particular treatment, A. Therefore, in his case, and many others, B was independent of A. Had I used a particular treatment, A, and he had the outcome, B, I still could NOT claim (A==>B) in his case, even though it would appear that A was true. I can't make assumptions about A based on B because (B=/=>A). I can say this in my son's case because I know the natural history of his scoliosis. I also know that the majority of cases where nothing is done do not end up with the same good results, B. Therefore, in this case the particular therapy was to do nothing, A, and the outcome was complete correction of his curve (close to 20*), B. In this case I can apply the principles of logic (A=/=>B) because I know A is FALSE and B was irrelevant or independent of A in my son's case.

This is also why it is impossible to prove your demand with logic. You would have to analyze every alternative therapy individually. That is impossible because there are an infinite number of alternative therapies out there (as I demonstrated in another post). A handful of positive outcomes, B's, doesn't prove anything, especially when the majority of outcomes do not meet the requirement of B (reducing curves by a significant degree) as set forth in our logic statment.

We know that JIS cases respond differently than AIS cases. They are WAY more responsive to non-invasive treatments than AIS. So a practitioner could say to a parent of a JIS child that (A==>B) 75% more of the time than spontaneous resolution (I'm just picking a random number and not endorsing a particular treatment). With this information the parent of the JIS child would probably try the therapy in hopes that their child is in that 75% rather than taking a chance on spontaneous resolution vs. worsening of the scoliosis.

This is one reason we can't say with 100% accuracy that Dingo's son is benefitting, B, from his torso rotation training, A, even though his curve has reduced by significant degrees. Does this mean that Dingo should stop his son's training because he doesn't know for sure if A is true? NO. There are studies being conducted, one at least by Kevin McIntire, to show one way or another if A is true.



'Either way, if a treatment is not studied and doesn't meet the criteria for "proof", then it can't be endorsed by institutions such as Medical Associations. It doesn't mean that the treatment never works. It means that there is no "evidence" that it works.'

We were talking about evidence that at least one time it worked, not that it works.
So it has not any sense what you were saying in order to say is wrong what I'm saying here.

The bold is a requote of something I said for those following along.

So, in the case of Dingo's son, no one can say with certainty that the treatment, A (torso rotation), will work for all JIS. Does this mean that a doctor will recommend that a parent not try it? NO. Doctors have recommended all kinds of alternative therapies in hopes of finding one that works. If a doctor or researcher sees enough successes or has a very strong, logical explanation of why they hypothesize the treatment will work, then they apply for grant money to study the therapy in an effort to prove that it will work in a significant number of cases. But, unless the treatment always works, then they can NEVER claim that (A==>B). They can only claim that (A==>B) in a certain percentage of cases.

Thus far the ONLY treatments that can claim (A==>B) are surgical interventions. Fortunately, they are coming up with better, non-fusion, techniques for growing children such as VBS and tethering. Even EDF that you were considering for your daughter is considered a surgical intervention. The child has to be sedated and taken to an operating room where they are forcefully stretched and casted.
www.youtube.com/watch?v=kFHAED_BHVk

This does not mean that all other treatments are of no value at all. Other treatments may work for individuals for reasons that we may not understand. The individual may have an underlying condition or an anatomical difference that makes them more responsive to a particular treatment. But there can never be given a guarantee that the treatment will reduce the curve/s.

Pooka1
02-26-2013, 07:09 AM
Very clear and elegant exposition, Rohrer. This issue is put to bed in my opinion.


This does not mean that all other treatments are of no value at all. Other treatments may work for individuals for reasons that we may not understand. The individual may have an underlying condition or an anatomical difference that makes them more responsive to a particular treatment. But there can never be given a guarantee that the treatment will reduce the curve/s.

Case in point... Hawes. I am sure she had legions of people flocking to her feet begging to know how she did what she did (~10* reduction in a JIS curve held with work). So why don't we see hundreds/thousands of people who use her method successfully? Nobody knows the real reason but here are some contenders...

1. JIS versus AIS where most of the would-be acolytes have AIS (much more prevalent than JIS)
2. She did many HOURS of stuff a day for several years by her own account. That is going to weed out a lot of people with full-time jobs.
3. She was trying to avoid frequent chest infections and address pain, NOT straighten her scoliosis as far as I can tell from her published articles. She increased the distance from sternum to spine and this mechanically straightened the T spine a bit as far as I can tell. I think she was blind-sided by the straightening at first and now works on it specifically, probably by continuing to change the shape of her rib cage. If this is the mechanism, her case has exactly ZERO relevance to TL and L curves and can't help with those curves even in principle.
4. The decrease in curvature seems to be in the bounds of other PT that just corrects the posture-related part but can't touch the structural part.
5. She continues to do PT and whatever else (breathing?). Some people can't fathom doing something the rest of their life and in some cases can't do something if they get sick or hospitalized or whatever. In some cases, the cure is worse than the disease and PT until you die might be in that category for some.

Those are the first five that pop into my head. There are probably many other reasons why surgery goes on as usual post-Hawes (and post Schroth and post chiro and post any PT).

flerc
02-26-2013, 11:34 AM
I am the same Rohrer I have always been.

Certainly is good to hear this! I'll assume is really true.



I will address what I said about "idiots" one more time. I said that anyone who makes healthcare decisions solely on the basis of information from a public forum is an idiot. I stand by that.

What I DID NOT say is, anyone who uses a public forum to weigh into their healthcare decision is an idiot. EVERYONE here uses information they find to help them make decisions, just not solely from information they find here. I've found a ton of helpful information here that I have weighed into my healthcare decisions along with input from my healthcare providers AND what makes sense to me personally.

Do you see the difference in the two statements? Is it a language barrier? If what you thought were true, we would ALL be idiots for using the forum.


Of course you must to take into account the context under it was said all of this.


You must to be careful about what you say in a forum. Mainly if it is the bigest of the world. If you like to does categorical assertions when you have philosophic discusions while taking a coffe in a bar with your friends, nobody may blame you about anything even if those assertions has not any sense or cannot be proven, but is absolutely different if you make it here.

If someone here is doing a categorical assertions, mainly if never stop to do it, then must to prove it or reedit it...

Then you replied


The forum has a waiver that states:
"Nonetheless, this is an open public forum, and we caution every member of this community to use common sense and judgment in determining how to use the contacts and information from this center. NSF provides this service as informational only, and does not endorse or take responsibility for any person, statement, or item contained within this center. So, we welcome you to proceed enthusiastically, yet cautiously, in finding the information, and connections you are looking for to make informed healthcare decisions regarding scoliosis and related spinal deformities. To get started, simply click the link below to enter the forum."

Bold mine.


With that in mind, the only idiotic people out there are the ones who base their decisions solely on what people post on this forum.

No disrespect intended, Flerc. It just seems that you are arguing for the sake of arguing without any meaningful information to give.
.



Why you said that? I cannot imagine other reason than saying there is no problem in posting categorical assertions even having no sense here, because it only may hurt people who base their decisions solely on what people post on this forum (idiots)
I may agree with ‘anyone who makes healthcare decisions solely on the basis of information from a public forum is an idiot.’. Certainly I may also agree with a stronger assertion: ‘anyone who makes healthcare decisions solely on the basis of only one source is an idiot.’.
But if I know that doing something wrong I may hurt someone, it would be absolutely irrelevant for me to know if he is an idiot or not.


Yes, it was right what I felt when I read what you said about idiots making medical decisions only thinking in what they read in a forum.. and if decision rely in other source, what they read here cannot weigh in their decision?

I missed an ‘also’
‘and if decision also rely in other source,’



EVERYONE here uses information they find to help them make decisions, just not solely from information they find here. I've found a ton of helpful information here that I have weighed into my healthcare decisions along with input from my healthcare providers AND what makes sense to me personally.


Is basically what I was saying before.

So, I don’t understand your argue against my claim about categorical assertions.. is absolutely clear for us how important is what we may find here.. and certainly this claim is the reason of this thread.

flerc
02-26-2013, 03:14 PM
You are assigning the wrong values to A and B. I will try to be more clear:

A represents a particular treatment.
B represents a positive outcome (in our discussion a curve reduction of a large degree).

(A==>B) ONLY if A is true. Otherwise A and B are independent of each other. In a logic statement like (A==>B), (B=/=>A), meaning B does not lead to A or imply anything about A. It only goes one direction; from A leading to B and not the other way around. So if you have used a particular treatment, A, that is unproven (would be considered false until proven) and get B (positive outcome), then in this case you must PROVE that (A==>B) by PROVING that A is true. Otherwise B is independent of A which makes B irrelevant to A and you can not positively say that (A==>B) because A is false (ambiguous, not proven). In order to prove A, then A has to consistently and predictably lead to B. That's why one or two good outcomes, B's, in relation to a particular treatment, A, aren't enough. A has to lead to B every time [B]for A to be true.
.



Rohrer, I was sure all of this was a big misunderstanding, and yes, now I know what happened. I was not understanding why you said I gave wrong values to A and B, so I decide to read from the first post.. and I didn’t need to read any more.

Stop trying to convince that official western medical community is the only option.... and that all the other health professionals are criminals, non surgical treatments don´t works, cannot works, people believing in them are desperate/stupid..


Up to this point is right. I claimed her stop to doing that.

But then I was not clear enough and the worst is I wrote wrong what I wanted to say.



So, if you are saying that there is not evidence that non-surgical treatments [B]works, you should to prove at least that NEVER worked in any case in the world or you should to prove that cannot works, that is, giving a logical demonstration about it . You never did that as I know.


Of course I wanted to say ‘worked’, as I meant in the rest of the thread. Sorry very much!.. at least I know now I should not write in English so fast as I do in Spanish.. except I’d read very carefully what I wrote before posting it. I PROMISE I'll try to do it!!
And certainly is not clear what I means with ‘cannot works’ I was so focused in the ‘evidence of one case’ that I was thinking in works in just only one case but I didn’t wrote it.
And also ‘at least’ is confused.. I was thinking that proving that cannot works in just only one case, (supposing it would be true), sure would be much hard that giving something as a demonstration by the absurd proving that if would be one case it should to be well known by all of us.
And the last (I hope) ‘work’.. what means work? Her definition (I used in the rest of the post) is enough good for me.
So the right sentence is:

So, if you are saying that There is no evidence any conservative treatment has prevented any surgery, you should to prove that NEVER worked in any case in the world or you should to prove that cannot works in just only one case, that is, giving a logical demonstration about it . You never did that as I know.

Is so logical as saying: If you says 'There is not evidence about just only one Japanese with a height > 2 meters'. You should to prove that certainly not exist such japanese in the world or give something like a genetic explanation about why is impossible that someone of this country may reach that height.
Really I’m so sorry for the desagradable confusion and conflict this mistake/ carelessness provoked.
I suppose now is clear for you all what I was trying to say and why. Of course if not I’m sure you’ll make me note.

flerc
02-26-2013, 03:31 PM
I have modified the bad redacted post and now says what must to say.
I hope to see modified (or deleted) too all the posts with the famous sentence 'There is no evidence any conservative treatment has prevented any surgery' or see the proof of such assertion.

rohrer01
02-26-2013, 11:49 PM
I have modified the bad redacted post and now says what must to say.
I hope to see modified (or deleted) too all the posts with the famous sentence 'There is no evidence any conservative treatment has prevented any surgery' or see the proof of such assertion.

My only use of that sentence was to explain with logic what was meant by it. Since I'm not the one who said it, I will refer it to Sharon to remove it if she so desires. I'm guessing it will stand, otherwise this whole thread will need to be deleted. I gave you two examples of "possible" alternative therapies helping children on this forum; Dingo and Tamztom. This is all you need for your understanding of the word "proof" since you asked for only one case.

flerc
02-27-2013, 07:02 AM
.. and that all the other health professionals are criminals, non surgical treatments don´t works, cannot works, people believing in them are desperate/stupid.. and as I said you here stop to dirtying other threads in order to make your work.

Wow, cerrtainly it seems I was speaking with my self..my English had nothing to do with this. I should have to clarify also what I meant with 'cannot work', probably is not clear I was refering to cannot work for noone (cannot help noone), not that cannot works the method in the sense I really want they works someday.

The negative (not) 'cannot work for noone' is 'may work for someone', that is, may prevent 'someone' to have a surgery, that is, if instead of using that method, 'someone' would had not did anything, or just only does non sense activities (in order to avoid surgery) as taking a bath every day, eating a vegan diet or standing under a full moon for three consecutive months or other absurds posibilities as you mentioned before, sure, 'someone' would have the need of surgery. Certainly I reserve my opinion of some old member here may arguing that probably 'someone' avoid surgery because taking a bath every day.. not seeing television every day..it would be different to talk about life styles, including not necessarily profesional treatments but activities/sports as swimming. Certainly I'm not sure if it may be the reason in a case I know.

So, if someone is using her stament 'There is no evidence any conservative treatment has prevented any surgery' to CONVINCE people that not exists just only one non surgical treatment (including special life syles/activities.. also a smart customized combination of all of them (my old dream)) that may help him to avoid a surgery, as she did in tons of threads, also should to update/deletes all of them. I only use (certainly quote) this statment just only to show how perverse is what is happening in this forum.

If you or someone else use it because also believe it would be fool to hope to avoid a surgery if the surgeon's protocol or some surgeon said that is not possible, but only wanting to help in saying that, not to convince, of course is their right to do that. Anyway must to give a rational and well founded arguments of their proclaim.. except the name of this forum would be something as Surgeon'sScolioisForum and have a waiver as I suggested here before

Pooka1
02-27-2013, 07:21 AM
If you aren't evidence-based then you are faith-based. That is NOT appropriate when dealing with a serious medical condition FULL STOP. It is so inappropriate that courts have stepped in with parents who try to substitute faith for evidence when it comes to medical issues of their children.

I am certainly not saying anyone here needs court intervention. I am saying the same type of thinking that eschews evidence is on display.

flerc
02-27-2013, 10:48 AM
If you aren't evidence-based then you are faith-based. That is NOT appropriate when dealing with a serious medical condition FULL STOP. It is so inappropriate that courts have stepped in with parents who try to substitute faith for evidence when it comes to medical issues of their children.

I am certainly not saying anyone here needs court intervention. I am saying the same type of thinking that eschews evidence is on display.

Of course is something enough clear for everyone that

[the categorical assertion
'There is no evidence any conservative treatment has prevented any surgery' and hundreds meaning the same

is at least a so much convincing argument to believe what follows in those posts:

‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

Is not needed any background in formal logics or Math or any degree in any important Scientist University of the world or really any kind of study to understand something some obvious. Certainly I not think that may be needed a rational mind..is a matter of common sense.
Trying to proving the contrary adducing the validity or not of the implication of the second sentence by the first, would only be sophisticated contraptions trying to deny what cannot be deny.
And certainly only a perfect idiot may infer since all the above [assertion] that who may do it is not evidence-based.

Pooka1
02-27-2013, 11:08 AM
No evidence of efficacy =/= can't work.

For example, there is no good evidence bracing or PT works in AIS but that doesn't mean it hasn't helped a small, select group that would be unidentifiable in a study due to variability. Showing that any conservative treatment has avoided surgery is probably too tall an order to ever show.

If alternative treatments had evidence they worked then they would produce it. Why don't they produce it? Schroth has had over 90 years. Other PT has been around at least a decade. What are they waiting for?

flerc
02-27-2013, 11:36 AM
First of all, do you agree with my assertion []

[your categorical assertion
'There is no evidence any conservative treatment has prevented any surgery' and hundreds meaning the same

is at least a so much convincing argument to believe what follows in those posts:

‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

or not?

jrnyc
02-27-2013, 12:33 PM
curing scoliosis....???
if there is a "cure" developed for crooked, i am sure there is a Nobel
prize in medicine waiting...for any cure for anything crooked in the human body....
when bones don't heal right, they are broken and re-set....straight...
i cannot imagine the fantasy world in which crooked is made straight
without involving bones being reset in some way or other...
maybe faaaar in the future...
for now, i know lots of patients who would be thrilled if just the
pain could be "cured"

jess

flerc
02-27-2013, 02:20 PM
First of all, do you agree with my assertion []

[the categorical assertion
'There is no evidence any conservative treatment has prevented any surgery' and hundreds meaning the same

is at least a so much convincing argument to believe what follows in those posts:

‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

or not?

I'm waiting for the answer (Y/N) .. or the updating/deleting of all those posts.

jrnyc
02-27-2013, 08:02 PM
i do not know if bracing should be called "cured" unless that person never needs any more tx of any kind...delaying tx is not
the same as curing, in my book...
so i would think it requires decades of follow up...

do not know enuf about stapling to know...but i shall ask Maria
if it is thought to "cure" and how long the results have been followed
up...decades...???

jess

Pooka1
02-27-2013, 08:31 PM
Bracing in JIS can reduce curves. Bracing is NOT to claimed to reduce curves in AIS because it never does apparently.

Stapling appears to be the closest thing to a cure for scoliosis along with fusions that stay above about L3. Tethering will hopefully join this group. And of course natural history itself cures some JIS and AIS cases.

jrnyc
02-27-2013, 08:41 PM
so that means that the only "cure" is when scoliosis can be stopped in it's tracks and reversed for young people/children before adulthood....
yes?
i do not consider natural history a cure, as it seems so random...
and beyond the influence of any kind of medical intervention.

jess

Pooka1
02-27-2013, 10:48 PM
so that means that the only "cure" is when scoliosis can be stopped in it's tracks and reversed for young people/children before adulthood....
yes?
i do not consider natural history a cure, as it seems so random...
and beyond the influence of any kind of medical intervention.

jess

Well I just meant that natural history can reduce or even totally straighten some curves. So they essentially cure themselves.

mariaf
02-28-2013, 10:05 AM
Both bracing and staplling have cured some patients - reducing a curve to below the scoliosis threshold and leaving the patient with a normal (unfused) spine.

If you are referring to AIS cases, I was under the impression that most orthos do not believe that bracing will permanently correct a curve in these cases, AND hold that correction after the patient stops wearing the brace. Maybe I'm wrong.

As for stapling, it can accomplish this, although of course, that’s not the case for everyone.

One example comes to mind (probably because I remain in touch with the mom) of a 12 year-old boy stapled for a 40ish curve. He is now 16 ½ and his curve is in the teens. Mom believes he has already gone through his rapid growth spurt. IMHO, I don’t see how this could have been achieved with bracing (even forgetting the fact that, according to mom, the child would probably not have been overly compliant).

Again, everyone’s results will be different but the above case is far from the only example of this – as I said, it came to mind because I’ve been closely following this child.

In addition, there have been patients whose correction from stapling has held past skeletal maturity. The first patients were 'stapled' about 11 years ago so many are now well past the end of growth.

I certainly cannot say that my son has been ‘cured’ because he still has a good amount of growth remaining. However, to me his case is another example of VBS achieving what bracing could not. My son wore a brace full time for about 3 years as a young child and while it basically held his curve, we saw no improvement at all in his curve. (See my signature for stapling results). I also will never know (although I have strong beliefs) if he would have avoided multiple surgeries (i.e., growing rods) had we stayed the course with bracing.

So, personally, I don’t put bracing and VBS in the same category (again, that’s just MY opinion based on what I’ve seen over the years).

I believe that tethering holds even more promise based on the results so far and the wider patient base that can benefit from it.

flerc
02-28-2013, 10:28 AM
Fusion cannot cure, because it does not return the spine to a normal state and it creates its own set of problems.

The goal, one would think, would be to increase the types of patients for whom a cure is possible and to do away with fusion altogether, since it is the only current treatment with permanently uncures the spine. It's the only known dead-end.

Yes Hdugger.. if it was not be a sad fact as it is, it would not be so perverse what is happening in this forum and probably would have not sense to demand what I'm demanding.



First of all, do you agree with my assertion []

[the categorical assertion
'There is no evidence any conservative treatment has prevented any surgery' and hundreds meaning the same

is at least a so much convincing argument to believe what follows in those posts:

‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

or not?

I'm waiting for the answer (Y/N) .. or the updating/deleting of all those posts.

mariaf
02-28-2013, 02:50 PM
On bracing, I believe bracing has cured scoliosis in some JIS patients (the same patients for whom stapling is also most effective).

Yes, I would not find it surprising if, in some cases, bracing 'cured' scoliosis in a JIS patient.

The difference comes with regard to AIS cases. While stapling may not be quite as effective for AIS patients, as compared to JIS patients (if for no other reason because of the amount of growth remaining), it has 'cured' scoliosis in some AIS cases, as referenced above, including some who have reached skeletal maturity.

Whereas, to my knowledge, bracing has never cured scoliosis in an AIS patient.

p.s. I do agree that in a lot of cases (not all), a curve that would respond well to bracing would respond well to VBS and vice versa. However, that is not always the case, for example with my son. I also know of other patients whose curves were progressing despite bracing but who responded well to stapling.

I, however, personally don't think that a curve that was too aggressive and did not respond well to VBS would have ever been held (let alone corrected) with bracing.

So while VBS and bracing are similar in some respects; in other ways they are very different.

mariaf
02-28-2013, 03:58 PM
I think our knowledge is too asymmetric to make sense of that information.

There are a limited number of stapling patients, and you're in a pretty good position to be able to acquire information on most of them. In particular, you're likely to hear about any unusual result (such as stapling curing an AIS patient). We don't have any way of getting the same kind of feedback from bracing patients. Unless we happened to know one personally, or unless a doctor published a case study, it would be like the tree in the forest. That doesn't mean that it has happened, it just means that it could easily have happened without either of us being any the wiser for it :)

I agree with some of what you said, but I would not necessarily call the case I sited of stapling curing an AIS patient unusual; nor do I feel that I am more likely to hear more about any one particular outcome. I spend a considerable amount of time following a lot of these VBS kids and I think (or at least hope) that I have developed somewhat of a feel regarding various types of cases, outcomes, etc.

I also think that if there have been cases of bracing curing AIS we would have heard about it, although nobody can prove it or ever know for sure. But I think the fact that most orthos would not say that bracing can cure AIS would bear this out.

Pooka1
02-28-2013, 04:18 PM
I also think that if there have been cases of bracing curing AIS we would have heard about it, although nobody can prove it or ever know for sure. But I think the fact that most orthos would not say that bracing can cure AIS would bear this out.

Exactly so, Maria. Like a broken record... braces are not claimed to reduce AIS curves. They are only claimed to hopefully prevent progression.

The only trained people I have heard come anywhere close to claiming a brace can permanently reduce an AIS curve is the Montreal crowd but their literature is widely disregarded by their peers as far as I know. Indeed we have seen evidence on this forum for why their peers widely disregard this literature.

mariaf
02-28-2013, 04:37 PM
On a related note, I know that tethering is very new but I am finding it more and more difficult not to get really excited about it.

I just got a text from a mom who was in Philly today for her daughter's 3 month checkup. Her daughter (age 13, I believe) had a 47 degree curve before her tethering surgery - and today mom said she cried when she saw the x-ray. The curve was at 13 degrees!!!!! It had been somewhere around 20 at the last checkup (probably either 1 month or 6 weeks postop).

There is another child I know of who started out in the 40's as well and is in the teens now after having tethering last November. And still a few others who I don't know personally but whose parents have reported very good results so far. Some of these kids see Dr. Newton as well, who is also finding tethering to yield excellent results.

As I said, it's very new but the results are so promising.

Pooka1
02-28-2013, 04:46 PM
Very exciting! It sounds like tethering had a real chance of obviating many and hopefully most fusions. Maybe someone will get a Nobel.

flerc
02-28-2013, 05:07 PM
On bracing, I believe bracing has cured scoliosis in some JIS patients (the same patients for whom stapling is also most effective).

Hdugger I don’t know if you have seen this article http://europepmc.org/articles/PMC3086537/reload=0;jsessionid=BymLKZ91Sf7fxWA0MwTD.0
It seems to enlarge the window of people that may be cured.


I share your puzzlement. In my previous experience with medicine-based forums (for cancer, for example) the emphasis was always on the cure. Non-cure treatments were accepted as a necessary evil, but no more.

I cannot figure out why in this forum there is a feverish defense of standard practice (which wouldn't seem to need a defense, since it's the customary treatment), instead of the normal frustration patients usually feel about a non-cure treatment.


You seem to be the only one in the world who also thinks the same. But not of course.. many people around the world knowing this forum think the same, but prefer to keep silence.
I perfectly know of course I’m not the only one in the world absolutely convinced that this feverish defense of standard practice in the biggest scoliosis forum of the world, contributes to make it a perpetual practice.. Spinal fusion is already a CENTENNIAL practice!

I’m sure that all the evil of the world is not only because the bad people provoking it, but mainly because the good people not doing anything to not allow it.
That ‘good’ people probably may be seen as good anyway, but at least they are accomplices.
And certainly I don’t want feel as an accomplice of the perversion I’m seeing here since long time ago.

If in this forum as you said, instead of expressing frustation, they prefer to defend the standard practice (which really not seem to need any defense as you said).. but.. AT LEAST, it should to be enough clear for everyone here the influence provoked in someone facing an extremely difficult decision and 'new' in theese issues to read categorical assertions as I quoted in this thread and may be seen at least hundreds of times in this forum, trying to convince everyone to think as a member of that club. And it should be enough clear also for them that is something perverse and should to reacts to it do something as I’m doing, but not..

rohrer01
02-28-2013, 07:00 PM
Someone correct me if I'm wrong. But in keeping on topic with this thread, don't stapling and tethering fall into the "official western medical community" category as methods for treating scoliosis?

Flerc, is the real problem you are having with the western medical community the fact that spinal fusions are regularly done as a dominant form of treatment?

I haven't heard you object to stapling or tethering. Those are also surgical methods of treating scoliosis as I said in an earlier post. These surgical methods have to be done on much smaller curves (usually) than most kids that are fused. These kids are therefore undergoing "surgery" (albeit less invasive surgery) at much younger ages.

In any case, I also agree that a fusionless way to correct scoliosis is ideal. Right now these new and exciting procedures hold promise. Since the oldest techniques are only 11 years old, we have no way of knowing long term outcomes at this point. Yes, some of these kids are now adults. What we don't know is what will happen during middle age and beyond. Even with this lack of knowledge, I would still opt for this treatment, if at all possible, before consenting to a fusion. But for some people, not all, fusion is their only choice, especially for kids with very large curves (such as Elias) and adults.

The good thing about fusionless correction is that if problems do arise later on, other methods of treatment may still be viable. Once a person is fused, it's permanent.

I also agree with Jess, that for many of us, finding a therapy to alleviate the pain is cure enough for us. Spinal fusion often causes much more pain in some people while alleviating it in others. No one knows why this is true, either.

I personally would hold off on saying that anyone has been "cured" of scoliosis at this point, even if the curve has been brought down to less than 10* (the criteria for being considered scoliosis). The reason I say this is because no one knows what will happen later on and the underlying problem that caused the scoliosis is/may still be present. Also, they still carry the genes and can pass along. I would feel more comfortable in saying there is a treatment that will resolve the spinal curvature.

jrnyc
02-28-2013, 08:58 PM
how is bracing "standard medicine"??
standard for whom? for kids?
it is certainly not "standard medicine" for adults...
and it's success has not been proven long term....
also, i am not sure what "bread and butter" tx is...
not fusion...fusion is not a basic tx, since it involves a radical
surgical procedure...quite different from an injection that will
wear off in a few months, if the injection even makes a difference
at all...
maybe some day, all scoli can be stopped, or reversed, or prevented
from progressing for children, so the adult population of scoli patients
becomes something in the distant past....
maybe after decades, that will come to be true...
perhaps some other tx will be found during that same time period.
but it is not always about "returning" the spine to it's
"normal straight" position...some patients have no memory of their
spines ever being "normal" or "straight"

jess

Pooka1
02-28-2013, 09:08 PM
but it is not always about "returning" the spine to it's
"normal straight" position...some patients have no memory of their
spines ever being "normal" or "straight"

jess

Jess,

That is a very interesting and valid point. I suspect my daughters do not remember life before fusion. When I asked my one daughter to see how far to the side she could bend, she couldn't remember if it was different from before she was fused. This is normal to her. It would be hard to convince my daughters that they are not cured although they realize there are no out-year patients with this instrumentation. They look and feel normal from their perspective.

For many adults, returning to a non-pan state would be the prize I imagine.

Thanks for that post.

Sharon

rohrer01
02-28-2013, 09:11 PM
It's too bad that the Cobb angle has become such an obsession, when clearly it's pain, mobility or deformity that actually get to people, and none of these are adequately reflected in the Cobb angle measurement. That leave us measuring success in degrees, which clearly is not the real measure of success.
Hdugger,
I agree on all of your above post, but especially this part. There are so few people with super high deformities, like myself and your son (realize different causes), that there really aren't any doctors out there who see enough of us to make me feel secure in seeing them. I am not a cobb angle. I am a person with painful scoliosis, no matter the degree of the cobb. Do I want to be fused, no. I want pain relief NOT in the form of pills. If I can't take it anymore and fusion is the last option, will I do it? I don't know. If it's botched, it's permanent. On the other hand, if all the other treatments fail to alleviate my pain and I'm stuck on pills anyway, who knows what I would decide.

I know of others on this forum with very small curves, <30*, who are/were in a tremendous amount of pain. Remember Davis? I think he opted for fusion. We (meaning forum members) all treated him like he was nuts and he's not here anymore. But really, who are any of us to say how much pain he was in? I hope his fusion helped him. I wish he would come back and let us know. It makes me wonder if tethering an adult with a curve that size would work. I realize the premise behind tethering is that they kind of "tie" the vertebrae totether and as the person grows, the tied side can't grow thus straightening the spine. During growth there has to be a tremendous amount of tension on that tether line, so why not try in adults that don't have a lot of other problems like arthritis, DDD, stenosis, and the lot that comes with age. Surely they have a ratcheting system that would make it not so difficult for the surgeon. There is a LONG way to go with this research.


Flerc,
I honestly would try most things out there. The problem for me is that I live in the "Medical West" and my insurance will NOT pay for most alternative treatments. I had to pay for accupuncture out of my own pocket. I can't afford to try so many things because of the system I live in. Almost half my husbands wages go to pay for insurance and my other medical expenses, which makes us poor moneywise.

rohrer01
02-28-2013, 09:17 PM
I think bracing is a standard "bread and butter" treatment because it is done frequently AND brings in a lot of money. It's sad for the kids, though. =(

Pooka1
02-28-2013, 09:27 PM
I think bracing is a standard "bread and butter" treatment because it is done frequently AND brings in a lot of money. It's sad for the kids, though. =(

Bracing is very unusual as far as I know in that it is the standard of care despite being obviously experimental. This throws people because they cannot reconcile it. It can't be reconciled logically. As I type, surgeons from at least 26 institutions agree that it is ethical to randomize kids to a no-brace control group. If that isn't experimental, I don't know what is.

The scandal is I suspect there are people on this group would would withhold the very fact of the BrAIST study from kids if the surgeon who prescribed the brace didn't mention it to them. I think there are people here who actually think some people are not entitled to information. Well I think parents and kids need to know things like this because they can't accumulate a collective thousand years of experience like the BrAIST surgeons. They don't have the time.

Pooka1
02-28-2013, 09:32 PM
I think bracing is a standard "bread and butter" treatment because it is done frequently AND brings in a lot of money. It's sad for the kids, though. =(

Actually, I think because it is the standard of care, surgeons expose themselves to malpractice lawsuits if they don't prescribe it. It is purely defensive. The designation of standard of care needs to change if kids are going to be treated humanely. It won't happen before then.

If you think about it, VBS and tethering, as surgical procedures, would be unethical per se if there was good evidence bracing worked. And yet here they are.

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

jrnyc
02-28-2013, 10:29 PM
rohr, i don't understand what "super high deformities" means...
do you mean high up on the spine, like by the neck?
because when i first read the phrase, i thought it meant
"super high" as in "very large"...
??????

jess

mariaf
02-28-2013, 10:36 PM
If you think about it, VBS and tethering, as surgical procedures, would be unethical per se if there was good evidence bracing worked. And yet here they are.

Exactly, Sharon.

And I agree with you and Rohrer about why a lot of doctors prescribe bracing - it brings in a lot of money, doesn't expose them to malpractice suits and insurance covers it. It's just EASY for them (and yes that's very sad).

I also wonder how long folks will refer to VBS as 'experimental' - it's been around over a decade now and while I understand we don't know the effects when these kids turn 30 or 40, many have now reached skeletal maturity and what we DO know is that absent VBS, many would have been fused OR had growing rods and we know those can cause problems. In the 11+ years that VBS has been in existence there have been no adverse effects thus far so that's the only time frame we can look at.

And I agree with you that while I don't care for the word because I think it's overused, bracing deserves the tag of being 'experimental' if any treatment does.

mariaf
02-28-2013, 10:41 PM
I haven't heard you object to stapling or tethering. Those are also surgical methods of treating scoliosis as I said in an earlier post. These surgical methods have to be done on much smaller curves (usually) than most kids that are fused. These kids are therefore undergoing "surgery" (albeit less invasive surgery) at much younger ages..

Rohrer,

Just to make a distinction, with regard to VBS it is definitely true that it is generally done on smaller curves than one would fuse. The cutoff used to be 40, now it's 35 degrees.

However, tethering is a different story. While the last paper I saw on it stated the general cutoff at 55 degrees, I know of a few cases in California where larger curves were tethered (in the 60's). Like VBS, I'm guessing the best results will be on the smaller curves (the ones tethered in the 40's vs. the 60') but time will tell. I believe right now the 2 patients I know of who had tethering for 60-65 degree curves each got an initial correction of about 20-25 degrees with the hope that growth will bring further correction. As I said, only time will tell.

rohrer01
02-28-2013, 11:30 PM
rohr, i don't understand what "super high deformities" means...
do you mean high up on the spine, like by the neck?
because when i first read the phrase, i thought it meant
"super high" as in "very large"...
??????

jess

High up on the spine. In particular "lefties". My surgeon says he sees a curve as high as mine every one or two YEARS. That includes both righties and lefties. Lefties are a whole different monster, as people with leftie curves stand a 40% chance of having a Chiari 1 Malformation, according to a website I read. For those curious, type in Chiari in your search and you will find the website in the thread I started about it.

It boils down to IF a surgeon has been doing these surgeries for 20 years, s/he will see maybe 10 to 15 cases of a very high thoracic curve with a small percentace of those being lefties. That accounts to NO experience in my book.

rohrer01
03-01-2013, 12:05 AM
Rohrer,

Just to make a distinction, with regard to VBS it is definitely true that it is generally done on smaller curves than one would fuse. The cutoff used to be 40, now it's 35 degrees.

However, tethering is a different story. While the last paper I saw on it stated the general cutoff at 55 degrees, I know of a few cases in California where larger curves were tethered (in the 60's). Like VBS, I'm guessing the best results will be on the smaller curves (the ones tethered in the 40's vs. the 60') but time will tell. I believe right now the 2 patients I know of who had tethering for 60-65 degree curves each got an initial correction of about 20-25 degrees with the hope that growth will bring further correction. As I said, only time will tell.

So were they in the 40-45 degree range after tethering or were they in the 20-25 degree range? Either way this is amazing stuff. I'm all for it. If I have grandkids with scoli, I'd much rather see them get a treatment that will reduce curves like this without fusion.

I'm kind of wondering what would happen if a staple or cable broke under the stress of holding these curves for so long. Would the spine progress or would it stabilize due to the fact that bone remodelling would cause the vertebrae to take on a more normal shape? I ask this because rods break under the stress. Staples and cables can't be as strong as rods. I think this would be more of a problem in adults because it takes SO much longer for bone remodelling to take place. But, as you say, 11 years with no problems. Hopefully, it stays that way!

I mentioned what I did to Flerc because he has a problem with anyone who promotes Western Medicine as being the only source of help. He has also indicated a belief that Scoliscore will result in children being operated on at a younger age. With that said, these methods fall pretty much into both categories AND they are surgical.

jrnyc
03-01-2013, 12:43 AM
thanks for clarifying that, rohr...
i am sorry for the pain it causes you....

jess

flerc
03-01-2013, 09:22 AM
I mentioned what I did to Flerc because he has a problem with anyone who promotes Western Medicine as being the only source of help.

It is a confused statement since I’m doing a denounce about something PERVERSE happening here.
What I may believe or not about stapling or tethering (certainly I never objected) or VEPTR, vertebral wedge ostetomies or any other non fusion surgery and others I‘m not sure what are, as Daytona or external fixator, has nothing to do with my denounce here.

mariaf
03-01-2013, 09:22 AM
So were they in the 40-45 degree range after tethering or were they in the 20-25 degree range? Either way this is amazing stuff.

The patients who started out with very big curves (in the 60's) initially had their curves reduced by about 20-25 degrees and are now somewhere around 40 degrees following tethering. Of course, the hope is they correct more with growth.

With curves that start in the 40's, it is not unusual for these to end up in the teens post-tethering (even before growth, which can bring additional correction).

I think in the case of the larger curves, the patients/parents wanted to try something to avoid fusion, so they are rolling the dice. If I were in that situation, I'm not sure I'd do anything differently than they are.

Sorry if I was unclear by the way.

mariaf
03-01-2013, 09:26 AM
Basically, fusion surgery and certain braces are standard. Everything else (including VBS, SpineCor, and exercise) are considered experimental.

Then IMHO the standard forms of treatment leave a lot to be desired, maybe even moreso for the JIS crowd.

mariaf
03-01-2013, 09:28 AM
I think the words people are looking for are "effective" and "ineffective".

Agreed. I'd be more concerned with the distinction here than, say, whether or not something is FDA approved.

I have my own views about the FDA as they have 'approved' so many things that later had to be pulled from the market and as with anything to do with the government, I don't necessarily trust that their motives don't have more to do with money than with doing what's right. But these are STRICTLY my personal views and opinions.

rohrer01
03-01-2013, 11:44 AM
It is a confused statement since I’m doing a denounce about something PERVERSE happening here.
What I may believe or not about stapling or tethering (certainly I never objected) or VEPTR, vertebral wedge ostetomies or any other non fusion surgery and others I‘m not sure what are, as Daytona or external fixator, has nothing to do with my denounce here.

What does? Is it sweeping generalized statements? It seems to me that the leading technological advances are being made by the western medical community. It has nothing to do with thinking western medicine is better and more to do with money for research. I'm sure if some of the poorer countries had the funding, they would be at the cutting edge. In fact, as I see it, it's not a United States thing, since many European countries seem to be on board with this stuff. Not all studies are done here, grante many are, but a lot goes on in Europe. You can't really call that the "western medical community". I'm guessing that Japan is probably on board with this technology, too. I don't have any evidence of that, but they seem to be very technologically savvy over there. I don't know what's going on in China, since no one ever talks about China. So, if you take the politics out and look at the world as a whole, we seem to all want the same things, right? We want good living conditions, peace, health, security, no? So, if it's the categorically sweeping statements that bother you, then these new and exciting treatments fall into your category. I'd say that phrase "western medical community" is a very categorically sweeping statement, no offense.

I think we are all hoping that fusion will someday be a thing of the past, like the iron lung. But for "right now" it's what we have for those desperate, in pain, and dying, or those with that looming in their future. For those that are able and willing to hold out, there are probably great things waiting in their future.

Pooka1
03-01-2013, 12:19 PM
I think we are all hoping that fusion will someday be a thing of the past, like the iron lung. But for "right now" it's what we have for those desperate, in pain, and dying, or those with that looming in their future.

I think he is objecting to simply stating this despite it being factual/reality. Recall that some people are NOT interested in factual material.

And in re "western medicine", I don't think he is trying to draw a geographical distinction between the west and the east. I think he is trying to draw a distinction between evidence- and science-based approaches ("western") on the one hand and non-evidence-, non-science-, faith-based approaches (alternative "treatments") on the other.

flerc
03-01-2013, 12:46 PM
Instead of trying to guess what I was saying recently, why you don't reply what I asked days before or does what you should to do?



First of all, do you agree with my assertion []

[the categorical assertion
'There is no evidence any conservative treatment has prevented any surgery' and hundreds meaning the same

is at least a so much convincing argument to believe what follows in those posts:

‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

or not?

I'm waiting for the answer (Y/N) .. or the updating/deleting of all those posts.

If it is difficult for you to understand the question, let me know.

rohrer01
03-01-2013, 12:54 PM
Flerc,
You are the only one who said this: ‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

I can't redact what YOU said. And, yes, what you are asking is very confusing since you yourself are the one making the sweeping categorical claims about the "western medical community". You MUST DEFINE what you mean by that before any of this makes sense. You agree to the nonfusion surgeries made by this group and deny the fusion surgery part. Is that what you mean? To me, you have to work with what you have. You can accept or refuse any treatment you wish, but what you can't do is lump treatments into a category and then deny the whole category. What is the other side? Is it Western Medicine vs. Eastern Medicine?

You find me the post where I said EXACTLY what you quoted and I'll delete it. Fair?

flerc
03-01-2013, 01:08 PM
Flerc,
You are the only one who said this: ‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

I can't redact what YOU said. And, yes, what you are asking is very confusing since you yourself are the one making the sweeping categorical claims about the "western medical community". You MUST DEFINE what you mean by that before any of this makes sense. You agree to the nonfusion surgeries made by this group and deny the fusion surgery part. Is that what you mean? To me, you have to work with what you have. You can accept or refuse any treatment you wish, but what you can't do is lump treatments into a category and then deny the whole category. What is the other side? Is it Western Medicine vs. Eastern Medicine?

You find me the post where I said EXACTLY what you quoted and I'll delete it. Fair?

Do you are replying by Pooka1? ? I said it to her.

flerc
03-01-2013, 01:17 PM
What does? Is it sweeping generalized statements?

Certainly I don't remember just only one misunderstanding in all our previous chats.. I suppose the interference or I don’t know what really may be, is circumscribed only to this thread, I hope that.

What you said is confusing because it would be reasonable to infer that I think anyone who promotes Western Medicine as being the only source of help is perverse. Do you believe I said this? If I did it please quote it but with the context as I did once refering to something you have said.

flerc
03-01-2013, 01:32 PM
Bracing is NOT to claimed to reduce curves in AIS because it never does apparently.


GOOD! Do you not agree is a big difference between that sentence and this assertion:
'There is no evidence about any kind of brace has reduced any curve in AIS'

Which of those would someone use to convince about that Bracing is NOT claimed to reduce curves in AIS because it can't?





First of all, do you agree with my assertion []

[the categorical assertion
'There is no evidence any conservative treatment has prevented any surgery' and hundreds meaning the same

is at least a so much convincing argument to believe what follows in those posts:

‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

or not?

I'm waiting for the answer (Y/N) .. or the updating/deleting of all those posts.

flerc
03-01-2013, 01:52 PM
I think in the case of the larger curves, the patients/parents wanted to try something to avoid fusion, so they are rolling the dice. If I were in that situation, I'm not sure I'd do anything differently than they are.


If someone suggests that rolling the dice as you said, with non surgical treatments, may be who knows? the best choice in his case, immediately would be accused of stupid/ignorant/perverse/crazy... and without defending the arguments given in order to say that

flerc
03-01-2013, 02:35 PM
First of all, do you agree with my assertion []

[the categorical assertion
'There is no evidence any conservative treatment has prevented any surgery' and hundreds meaning the same

is at least a so much convincing argument to believe what follows in those posts:

‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

or not?

I'm waiting for the answer (Y/N) .. or the updating/deleting of all those posts.


Why you never reply this? Are you waiting another post of someone loosing the focus of my demand as happened some times before?
Is a great pitty there not be here private threads, where only some members may posts and the other only may read it.
Only you and I! Or everyone with the condition of not loose the focus anymore.

mariaf
03-01-2013, 02:38 PM
If someone suggests that rolling the dice as you said, with non surgical treatments, may be who knows? the best choice in his case, immediately would be accused of stupid/ignorant/perverse/crazy... and without defending the arguments given in order to say that

I don't understand what you are asking, or if there is even a question here, so I'll simply clarify what I said and exactly what I meant.

If my child had a curve of, say, 50 degrees, I would try tethering in the hopes of avoiding fusion based on the early results I have seen so far.

To repeat what others have said, you are the only one using words like "stupid/ignorant/crazy".

I, personally, would not, for example, try CLEAR to treat a 50 degree curve because it's been around a lot longer than tethering and has yet to produce any proof it can reduce any curve, let alone a significant one.

Once again, this is what I would do and I have never referred to anyone else or their choices as crazy/ignorant/etc. As Rohrer pointed out, those were YOUR words, and nobody else used them.

flerc
03-01-2013, 02:56 PM
I don't understand what you are asking, or if there is even a question here, so I'll simply clarify what I said and exactly what I meant.

If my child had a curve of, say, 50 degrees, I would try tethering in the hopes of avoiding fusion based on the early results I have seen so far.

To repeat what others have said, you are the only one using words like "stupid/ignorant/crazy".

I, personally, would not, for example, try CLEAR to treat a 50 degree curve because it's been around a lot longer than tethering and has yet to produce any proof it can reduce any curve, let alone a significant one.

Once again, this is what I would do and I have never referred to anyone else or their choices as crazy/ignorant/etc. As Rohrer pointed out, those were YOUR words, and nobody else used them.

Mariaf, I supposed you have read the title of this thread and we are in it. I believe together with the first post is clear enough for whom I was saying that and of course are not you or Rohrer.

flerc
03-01-2013, 04:39 PM
Maybe I was not clear enough


If someone suggests that rolling the dice as you said, with non surgical treatments, may be who knows? the best choice in his case, immediately would be accused of stupid/ignorant/perverse/crazy... and without defending the arguments given in order to say that

So I say it in different words:

If someone here suggest that a chance (even low as rolling the dice) for someone in the difficult situation you said, may be trying with some non surgical treatment, immediately would be accused of stupid/ignorant/perverse/crazy... and without defending the arguments given in order to do so hard accusation

mariaf
03-01-2013, 04:53 PM
You are claiming people would call them crazy or ignorant but nobody has done that so your claim can't be substantiated.

I personally would not roll the dice in that manner because non-surgical treatments have NEVER been shown to correct a 50 degree curve (to stick with the example we were using), but I would not call them ignorant or crazy.

Pooka1
03-01-2013, 04:58 PM
Maybe I was not clear enough



So I say it in different words:

If someone here suggest that a chance (even low as rolling the dice) for someone in the difficult situation you said, may be trying with some non surgical treatment, immediately would be accused of stupid/ignorant/perverse/crazy... and without defending the arguments given in order to do so hard accusation

First of all, none of this has anything to do with intelligence. We are talking about having or not having specific knowledge about the fact/evidence cases for various treatments. Everyone here can educate themselves by gaining knowledge. Nothing here that we lay folks talk about rises to the level of rocket surgery so intelligence doesn't come into the picture.

Second, I claim that the reason desperate people turn to alternative treatments is that they are under the mistaken impression that there is evidence that they work. They are simply mistaken. Remember, alternative medicine that works is called "medicine." I do not believe anyone would drop thousands of dollars if they understood the state of evidence for these treatments. I also do not think many kids would wear a 23 hour/day hard brace if they were told that while surgeons hope it works, they don't claim to have good evidence it works. That is an distinction that is a difference.

Does that answer it?

rohrer01
03-01-2013, 07:00 PM
Certainly I don't remember just only one misunderstanding in all our previous chats.. I suppose the interference or I don’t know what really may be, is circumscribed only to this thread, I hope that.

What you said is confusing because it would be reasonable to infer that I think anyone who promotes Western Medicine as being the only source of help is perverse. Do you believe I said this? If I did it please quote it but with the context as I did once refering to something you have said.

First of all, I replie to your previous "demand" because you weren't specific about who you were talking to and we've had some lengthy discussion on this thread.

Yes, by the title of your thread, this is exactly what I infer, "that (you) think anyone who promotes Western Medicine as being the only source of help is perverse." So what is it EXACTLY that you find perverse and what do you consider Western Medicine?

A lot that has been said on this thread has not been made clear, so inferences have to be made. If you would clarify this perverse thing you talk about IN RELATION TO THE TITLE OF YOUR THREAD that would clear things up.

It would have certainly been less stressful in communicating with you and saved on the anger or hurt feelings, etc. BECAUSE of the inferences you were also making about what others said. I think there may really be a language barrier going on. You speak English very well, but I'm sure expressing your thoughts consicesly in Spanish is much easier for you. So, once again, please define the perverse thing as it relates to the theme of your thread.

Thank you.

Just one more thought. I've never had trouble like this in communicating with you. THIS thread is a first, and honestly I don't see why it was necessary for things to get so fired up. We've always had free exchange of thoughts without any rudeness or demands, etc. I'm honestly baffled by what's going on here. You are usually so polite.

flerc
03-02-2013, 08:30 AM
First of all, I replie to your previous "demand" because you weren't specific about who you were talking to and we've had some lengthy discussion on this thread.
Rohrer, certainly I was not demanding amything to you in that post. I did mot suggest the cause of the ‘interference’ or distortion I’m realy seeing here. Something as a demand competition with you is far of what I’m intending here.. if not, I could showed for instance the wrong of your explanation about logics (independently the values assigned to A and B) when you interpreted I was asking to you something about this science.
Certainly I only showed you a wrong conclusion you did when I demanded you about something inconsistent with the Rohrer I knew. And certainly as I said you I decide to believe is really the same, but here something strange is happening. But it not worry me. I believe that someday this thread will end and all what happened here even your offenses to me will be definitely deleted from my memory and I hope the same happens with you so we’ll continuos with our old chats as ever we did.


Yes, by the title of your thread, this is exactly what I infer, "that (you) think anyone who promotes Western Medicine as being the only source of help is perverse." So what is it EXACTLY that you find perverse and what do you consider Western Medicine?[/B]

A lot that has been said on this thread has not been made clear, so inferences have to be made. If you would clarify this perverse thing you talk about IN RELATION TO THE TITLE OF YOUR THREAD that would clear things up.

The title in fact was this:
Stop trying to convince that official western medical community is the only option..

But the post began saying that:

..and that all the other health professionals are criminals, non surgical treatments don´t works, cannot helps noone to avoid surgery, people believing in them are desperate/stupid
I was not able to write a title so long so I used dots expresing the continuation. All that, is what I wanted to say in the title.
..
And the claim continued

and as I said you here

Not use this thread to do your work (your reason to be here). Try to be respectful. Tkare has a serious problem and need this thread for help. She not needs to be convinced for you about anything.
I replied here (this thread)

stop to dirtying other threads in order to make your work.

Obviously I was continuing a discussion in the quoted thread. Is difficult for me to imagine that someone reading all this, don’t realize it.
Even I quote one of hers posts of that thread

Convincing is the worst! Convincing is the worst!
And certainly she replied me inmediately, also it seems that Mariaf and Jess interpreted perfectly for whom I was saying what I said.. So I not agree it may suggest your interpretation about I was talking to anyone who promotes Western Medicine as being the only source of help.

Surely it will be more clear the title if it begins with her name, but so many characters are not allowed.
But certainly just only that part of the real title explain my demand, regardless what may be Western Medicine for me. Sure CLEAR and Schroth are out of it. Just only this obvious property (that nobody here ignore) telling what I was refering to is enough to understand what I was claiming.

Note I said ‘convince’ not promote. Don’t you believe is perverse to convince (as the title ever said) about something you refuse to prove is true?. If someone says something as ‘Well, my son has a big curve but I not believe scoliosis may be harmful for noone’ of course nobody may say it could be something perverse to convince him he is wrong and if someone say that he is ignorant/stupid/crazy/insane/desperate/not evidence-based and so on, of course is right. It’s just only one example to explain you what I mean of course.

But I was refering to something very different. I think is also clear what means the title saying ‘ is the only option’ .. or not?
Of course I was refering that if something may give to someone a chance to avoid something terrible, then is an option.

So if you are not sure that something out the medical community cannot offer someone a chance (even as rolling the dice) to solve his serious problem, mainly if nothing else may give that chance, then you must to agree with me that is perverse to convince about the contrary.
I really hope you can now understand what I said.

flerc
03-02-2013, 12:32 PM
First of all, none of this has anything to do with intelligence. We are talking about having or not having specific knowledge about the fact/evidence cases for various treatments. Everyone here can educate themselves by gaining knowledge. Nothing here that we lay folks talk about rises to the level of rocket surgery so intelligence doesn't come into the picture.

Second, I claim that the reason desperate people turn to alternative treatments is that they are under the mistaken impression that there is evidence that they work. They are simply mistaken. Remember, alternative medicine that works is called "medicine." I do not believe anyone would drop thousands of dollars if they understood the state of evidence for these treatments. I also do not think many kids would wear a 23 hour/day hard brace if they were told that while surgeons hope it works, they don't claim to have good evidence it works. That is an distinction that is a difference.


If someone wants to know what do you think about people trying with alternative treatments, may find inmediatly tons of yours posts in this forum.



Does that answer it?
Answer what? I did not ask anything in that post. If you refer to the question I asked you for days ago, of course not.

rohrer01
03-02-2013, 01:28 PM
Flerc,
I understand that this thread was clearly meant to be between you and Sharon. The only thing wrong I can see with my logic post is that we were looking at things two different ways and chose two different values for A and B. Clearly I was not following your line of thought in this matter. I will defer the rest of this back to you and Sharon. It might have been better communicated through PM. That way everyone else wouldn't have been sucked into the conversation that was meant only for Sharon.

Pooka1
03-02-2013, 04:18 PM
Flerc,
I understand that this thread was clearly meant to be between you and Sharon. The only thing wrong I can see with my logic post is that we were looking at things two different ways and chose two different values for A and B. Clearly I was not following your line of thought in this matter. I will defer the rest of this back to you and Sharon. It might have been better communicated through PM. That way everyone else wouldn't have been sucked into the conversation that was meant only for Sharon.

Don't leave me here alone!!!!

flerc
03-02-2013, 05:14 PM
Flerc,
I understand that this thread was clearly meant to be between you and Sharon. The only thing wrong I can see with my logic post is that we were looking at things two different ways and chose two different values for A and B. Clearly I was not following your line of thought in this matter. I will defer the rest of this back to you and Sharon. It might have been better communicated through PM. That way everyone else wouldn't have been sucked into the conversation that was meant only for Sharon.

Rohrer, of course I was never firing you from this thread. As I said before, I have not any problem in the participation of everyone, while the focus will not be lost anymore. And certainly if you understand now what I'm saying and we may be sure that the 'interference' ended, it's okay for me if you want to remains here, even if you also now believe I'm saying something wrong.
For instance if you or someone else believes is not something perverse to convince people through this forum that only an ignorant desperate may hope a help from non surgical methods or is really right yo say (in order to justify the last) 'There is no evidence any conservative treatment has prevented any surgery'.. while not refuse to test the arguments given to say what may be said, is ok for me.

Thanks for the advice of continue this by PM, but I suppose you understand it could have not any sense.

rohrer01
03-02-2013, 10:19 PM
Don't leave me here alone!!!!
Sharon,
You aren't left here alone. You don't have to return to the thread, either.

Flerc,
Honestly, none of this made any sense to me from the beginning. I was trying to understand you and where your anger was coming from in your title and first post. I'm sorry, I never got it and still don't. But that's okay. I will just agree to not understand why you are upset.

flerc
03-03-2013, 01:54 AM
Rohrer if I’m upset is because what I said is happening in this forum but sorry, I cannot explain you in a different way of all I already did. If you really want to understand it, I suggest you to ask Hdugger, who perfectly understand my puzzlement whith this forum and probably she may explain you in a different and more clear way. Certainly it have not any sense that we continues talking about this.

flerc
03-03-2013, 10:41 AM
And certainly Pooka1, it has not any sense to contimue talking about this with you any more..


First of all, do you agree with my assertion []

[the categorical assertion
'There is no evidence any conservative treatment has prevented any surgery' and hundreds meaning the same

is at least a so much convincing argument to believe what follows in those posts:

‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

or not?

I take your silent as a Yes. Of course is something so much convincing to hear this.. Oh my good! There is no evidence about just only one case! Why may I expect to be the first? What kind of ignorant desperate idiot am I?
If someone is sure to have only one option, of course will decide to take it and of course trying to think it will be a good option and having a great hope that his life would be better.
What if then, even the surgery was a great success, he realize his life is worst, the worst he never imagines could be?
And what if then he sees an evidence that a non surgical method prevented one surgery? What do you think he may feel against you and this forum?

But sure not worry you to think that.. sure you may argue something convincing in order to continues doing your job here free of guilt.
So say what you wants and continues doing your job for ever. Certainly at least by now I have not any interest in entering to this thread any more, but I will not feel me any more an accomplice seeing what happens here and not doing anything against it.

mariaf
03-05-2013, 09:30 AM
I often say that when you are faced with scoliosis, you have to choose what amounts to the lesser of the evils. There is no perfect solution at this time and there may never be a way to make the spine the way it was prior to the onset of scoliosis, particularly in moderate to large curves.

"No perfect solution" also, of course, includes VBS. However, while I'm sure that it is true that "some doctors worry about uneven wear on the discs" that doesn't mean it will happen. The doctors I have spoken to (those who perform VBS) have not seen any evidence of this so far. Of course, anything can happen later on down the line (for those who opt for surgery/VBS or for those who do not), but at this time those following the pool of VBS patients seem to feel the benefits still greatly outweigh the risks, given that many of these kids would otherwise require fusion, growing rods, etc.

Again, the lesser of the evils......

Pooka1
03-05-2013, 09:53 AM
I often say that when you are faced with scoliosis, you have to choose what amounts to the lesser of the evils. There is no perfect solution at this time and may never be a way to make the spine the way it was prior to the onset of scoliosis, particularly in moderate to large curves.

"No perfect solution" also, of course, includes VBS. However, while I'm sure that as you say "some doctors worry about uneven wear on the discs" that doesn't mean it will happen. The doctors I have spoken to (those who perform VBS) have not seen any evidence of this so far. Of course, anything can happen later on down the line (for those who opt for surgery/VBS or for those who do not), but at this time those following the pool of VBS patients seem to feel the benefits still greatly outweigh the risks, given that many of these kids would otherwise require fusion, growing rods, etc.

Again, the lesser of the evils......

Well put.

I have continually referred to this game as cutting losses. Normal is off the table. Close to normal is doable in some cases. Science and medicine appears to be the only viable path. Folk science and alternative treatments have to pony up evidence of efficacy just like medicine. Life is very unfair and scoliosis is just another exhibit proving that case.

mariaf
03-05-2013, 03:14 PM
I am certainly not saying that disc issues can't happen (I don't think you were questioning that, but I just wanted to be totally clear).

However, as far as anything insurance carriers state (not just with regard to VBS but with regard to anything), they are of course looking for ways to deny having to pay. That's their goal. For this reason, they would be the last source of information and opinion that I personally would rely on. They definitely have 'a horse in the race' as Sharon likes to say.

Having said that, I believe you when you say you found this statement other places when googling. When discussing just about anything, you can usually find opinions on both sides on the internet - and I'm sure there are those who in fact are concerned that this 'may' happen. One thing that I take comfort in is that so many parents who are in the medical profession have opted for VBS for their children. Offhand, I can think of 4 or 5 doctors, a radiologist and several nurses and other medical professionals - almost a disproportionate number, which I attribute to the fact that perhaps they are more likely to hear about the latest advances in medicine? I don't know. Could they all be wrong - yes, of course, but as I said it does give me some comfort. I know that, unlike insurance carriers, when these parents did their research it was focused on what was best for their child and nothing else.

Getting back to Blue Cross, I don't necessarily believe they formed thieir opinion based on 'informed medical review' (if by that term you mean comprehensive studies where large numbers of patients were followed post-VBS. As you state, VBS hasn't really been around long enough for that, and I've seen most studies to date and none that I saw reference this concern). I think it's far more likely they are doing what insurance carriers always do - assuming the worst until proven wrong, in order to save money.

With regard to flexibility, VBS is definitely not akin to fusion (maybe I did not correctly understand what you are saying). More than a few kids (even those with double curves and therefore a large portion of their spine 'stapled') have returned to activities like high-level gymnastics following VBS simply because they don't lose any flexibility whatsover.

In my mind, a lot of the discussion about what may or may not happen in the future, post VBS, is moot because as I often say:

'Would I prefer my son not have any hardware at all'? Yes.

"Given the same choices today, would I opt for VBS again?" In a NY minute.

mariaf
03-05-2013, 03:19 PM
Until you're faced with absolutely *having* to remove the limb or fuse/staple/brace the spine, you're going to look for another option.

I doubt many parents would even consider bracing/stapling/fusion until they absolutely had to.

mariaf
03-05-2013, 10:31 PM
I agree that it is relatively rare for a parent to want to try alternative treatments even after a doctor has said that surgery was clearly needed, but it does happen. I am probably most bothered by claims regarding alternative treatments that seem to be made for the purpose of separating unsuspecting, desperate parents from their money. But I guess we could debate these things until the end of time.

One thing I wanted to mention with regard to VBS and insurance. In the past few years, several different insurance carriers have covered this procedure which is probably why is it often now performed outside of Shriners (by guys like Dr. Vitale in NY, Dr. Diab in CA, etc.). We did an unscientific survey on the VBS site and found somewhere around 50% of the carriers that members had did in fact cover the procedure (some after an appeal was filed, others on the first attempt). We've also spoken to staff in different doctors' offices and they confirm the trend that more and more carriers are starting to cover VBS (not all of them of course, but that things are definitely moving in the right direction). Perhaps some insurance companies feel VBS is even more promising that Blue Cross does. I am also assuming that the carriers covering VBS no longer consider it experimental if they are paying for it. I guess insurance companies are like the rest of us - each with their own views and opinions.

I can't say that I agree with the statement that "VBS is in the same category as other alternative treatments" although I understand that you meant it has not been proven over 20 or 30 years. However, the one difference between VBS and alternative treatments like CLEAR (just to use it as an example) is that at least there is evidence that VBS has reduced curves in some patients, even through the end of growth/skeletal maturity. I am not aware of any cases where CLEAR or another alternative treatment method (some which have been around a lot longer than VBS) has achieved this. If they exist, I would love to see the proof because the truth is that I would love to see the day when a non-surgical method can do this, but unless and until that day comes, we are again left with a matter of choosing the lesser of the evils.

jrnyc
03-05-2013, 11:41 PM
VBS is done by legitimate doctors...
i think alot of so called "alternative" treatments are done by
chiropractors...i would never put them in the category surgeons are in..

also..."alternative" treatments as discussed here seems to imply
some approaches that are...outside of traditional medicine, to put
it kindly...
perhaps people should specify nonsurgical treatments vs surgical
approaches...or fusion vs nonfusion...
i guess i mistakenly thought alternative just meant nonsurgical...as in
"alternative to surgery"
my mistake...

jess

rohrer01
03-05-2013, 11:49 PM
Here's the concern statement about VBS (I pulled this from Blue Cross's page about scoliosis treatments, but I found it other places when googling)

"A concern is that stapling spans the flexible discs, and the
immobilized discs may be subject to degeneration."

I assume this is coming from some kind of informed medical review, and it makes sense in terms of how the spine reacts to other immobilizations.

The vacuum has caught me once again!

Hdugger,
Just stop and think about that statement. What in the world do they think happens to our discs when they are UNTREATED? I'm sure you have seen some of the x-rays on here of folks between about 35 an 65 years old and some of the gut-wrenchingly horrible degeneration that occurs on the discs and spine. We are talking about treatments for kids only. There is a very small time window where BIG decisions have to be made. If the wrong decision is made, treatment options decline rapidly. As far as nonfusion surgical options go; they just aren't available to adults because by the time we make it to adulthood, our spines are so messed up that only certain specialists can even operate to fuse the spine and at great risk to the patient.

So here we have it. If a child isn't treated with a less invasive, nonfusion surgery during this critical window, then they have nothing left to try except "alternative" methods. The good thing I see in these nonfusion surgeries is the fact that they aren't fused. If something doesn't work out and the "hardware" has to be removed, clipped or whatever they would do to "undo" the fix, the child (probably an adult by this time) isn't any worse off than if they hadn't had it done. In fact, they will probably be better off for having had their spines held straighter for so many years.

With this in mind, do you really and honestly think it would be fair for that child if a parent or guarian DELIBERATELY missed that crucial time period where something could be done in exchange for experimenting around with stuff like myofascial release, CLEAR, chiropractic, extensive bracing (thinking of Kat here, who by the way IS angry), or other "therapies" that haven't proven effective?

Heck, I'm a little angry that they putzed around during MY window of opportunity an opted out of fusing a few vertebrae and leaving me the way I am, in chronic pain. During this time I had chiropractic, muscle stimulation, very ineffective PT (including harmful PT exercises), traction, shoe lifts, heavy anti-inflammatory drugs, and I'm sure a few things I can't remember. Aside from taking the medication, all of these "therapies" took so much TIME out of my life. Time I would have rather spent being a teenager. All for what? Nothing worked and MY time was wasted. I would have been better off if everyone had just left me alone. If I had found out later on that things like VBS or tethering (probably tethering in my case) had been available and I was subjected to all of that time consuming, ineffective torture, I would be LIVID to say the least. That's my own feelings on the matter. There may be people out there that feel differently and would rather waste their time doing that stuff to try to avoid a surgery of any kind.

On a personal note, I have a shirt-tail relative who's custodial parent denied her surgery (she had IIS or congenital - not sure which). By the time she was 18 it was surgery or die. Her noncustodial parent provided her access to surgery (which noncustodial parent wanted her to have all along). They did the best they could with the technology they had at the time, but it had gotten so bad that they couldn't get her very straight. She's been on disability for a very long time. She's now in her early 50's and she's progressed again. She's on oxygen and too frail to operate on. The doctors have only given her a couple of years to live. Now, when dealing with severe cases like this, how fair is it to the child to use "alternative" ineffective treatments when this is the outcome? Did "avoiding surgery" save this woman's life or take it prematurely?

I really think that this topic of Flerc's really boils down to medical ethics. What is ethical to put a child through? Since there is no "cure", is it ethical to withhold treatments that are proven to at least help? I have some very strong opinions regarding this, especially when nonfusion surgeries are now available. Yes, I chose not to even follow my kids with x-rays. HOWEVER, I gave them the eagle eye treatment and continually looked at them bending over, even in my nonscoliotic child. My kids had mild curves, so I wasn't faced with the really tough decisions. I'm sorry for you parents out there that are. But you, as parents, need to look at the long term consequences of the treatments you choose. Your children won't be children forever and what you choose for your child now WILL impact them as adults.

I will step down from my soap box now.

rohrer01
03-06-2013, 01:19 AM
The JIS kids are a special case, I suspect. I've seen parents waiting for VBS who brace and end up reducing the curve so low that they're no longer in the VBS range. And we have a parent who has used exercise to reduce the curve. Are those attempts wrong? Should they all have gone into VBS because it came out of the medical realm and was thus somehow closer to standard medicine, if just by association? What about the growing rods? Would kids have been better off trying torso rotation instead of using those? Or are those kids better off for their treatment.

Yes, I agree that IIS and JIS kids are a whole different ballgame. They DO respond to different treatments. I'm obviously talking about those kids for whom there is no significant improvement with whatever treatment they are using. Heck, I had a self-resolving JIS child. It does happen. I look at Tamztom and think he's working a miracle with his daughter. She is either a very special case or she is very flexible and he has trained her to stand in a certain way that indicates improvement. But her case is also JIS, not AIS and she spends copious amounts of time exercising.

The person I talked about, I don't know if she ever received any treatment. However, surgery was strongly urged and her custodial parent refused. She had to go get help when she turn 18. If she did receive treatment of sorts, could that be called medical neglect? That's a medical ethics question, as is all of this.



The thing is, we don't know. VBS is just as alternate as the rest of this stuff - it falls into the realm of things where there's no solid evidence of what it will do long term. Will people kick themselves for missing the boat? Or heave a sigh of relief? Noone knows. We're all *hoping* it works. But it's just a hope at this point.

That's the whole point. We don't know the long term effects of ANY of this stuff except for the old Harrington rods. There's more information about the newer implants, but we're still talking fusion here. To me, fusion is the "iron lung" of spinal surgery, but for now it's all we have for severe cases.

With the nonfusion methods, how can this possibly be worse than fusion? It reduces curves and so what if a staple breaks? It's not like a pseudoarthrosis and a broken rod. What about tethering? I realize these are "new", but as I said earlier, they aren't fused. So how could they be worse off if it somehow fails down the road? I can see some of the same complications, as with any spine surgery, such as infection, especially. But these kids are still free to use other "alternative" approaches BECAUSE they aren't fused. I could see with tethering the risk of tethering too tightly before the growth spurt causing a curvature in the opposite direction. If a tether line broke, I suppose it could cause some injury, but not as much as you would logically think a broken rod could cause. My guess is that people will be kicking themselves for missing the boat on these treatments. Now, which one to choose may be a different matter.



I wouldn't fault a parent for any path they took. We're all just stumbling around here. Rampant abuse - people withholding desperately needed treatment - is very, very rare. But even without abuse, none of the options are all that great. None of these kids, including mine, is going to end up feeling great as an older person. They're all going to have problems, no matter what path they walk down. Because we cannot cure scoliosis. Once you've got it, you've got it, and you're never going to have a normal trouble-free spine. I'd cut everyone alot of slack, given those outcomes. There is no "right" choice, there are just varying shades of wrong. Do we pick the door with the lion behind it, or the tiger? I just wish there were a third door.

I would fault a parent for choosing a treatment option that isn't working and continuing other unproven treatments until the window of opportunity has passed. Yes, we are all stumbling around here. BUT, we have stumbled on some treatments that have proven to reduce curves, even if only in the short run. Kat's parents forced her to wear a brace that she didn't want on a curve that was too large. She suffered real physical injury from that AND had to have a longer fusion as a result of waiting longer. I realize that they are not bad parents and they were hoping to save their daughter from fusion, but look at the outcome of that. Now they have an angry young teenager to contend with. Who ultimately suffers? Kat does.

When you say there is no "right" choice, it reminds me of some exams they give in college that are designed to be thinking exams. There may be no "right" answer, so they say choose the BEST answer. Each child is unique and may respond to different treatments. If they respond, GREAT! I'm talking about the ones that don't. How do you classify parents that withhold desperately needed treatment? If they are in earnest effort taking their child to a chiropractor who keeps promising that they can help, yet the curve/s keeps progressing, are they neglectful? How would you prove that? You could substitue any other nonsurgical treatment in for the word chiropractor. What treatment are they withholding from a desperately needy child? I hope you see where I'm coming from. It's a medical ethics question.

Your son's case is special. He probably wouldn't be a ligitimate canditate for any treatment other than fusion because of his congenital scoliosis. He's also an adult and can "try" whatever he wants. If he's not in pain and not progressing, the safest thing for him to do would probably be to do nothing. My case is unique in that there really aren't many people around like me. Your son is the closest I've ever come to hearing about someone "similar". But I don't have congenital scoliosis and I'm a leftie. I've yet to meet anyone like me. I will tell you, in case you want to pass it along, accupuncture can help with muscle pain. So can trigger point injections and Botox injections if done properly. Sometimes all we can do is treat the pain, so you are right. Once a person has scoliosis, they always have it because there is no "cure" and we are bound to have the ill effects of it in our later years, if not sooner. What I'm talking about is minimizing those ill effects if possible with treatments that are known to reduce curves. I sound like a broken record, but it's ethics.

mariaf
03-06-2013, 10:54 AM
What in the world do they think happens to our discs when they are UNTREATED? I'm sure you have seen some of the x-rays on here of folks between about 35 an 65 years old and some of the gut-wrenchingly horrible degeneration that occurs on the discs and spine. We are talking about treatments for kids only. There is a very small time window where BIG decisions have to be made. If the wrong decision is made, treatment options decline rapidly.

So here we have it. If a child isn't treated with a less invasive, nonfusion surgery during this critical window, then they have nothing left to try except "alternative" methods. The good thing I see in these nonfusion surgeries is the fact that they aren't fused. If something doesn't work out and the "hardware" has to be removed, clipped or whatever they would do to "undo" the fix, the child (probably an adult by this time) isn't any worse off than if they hadn't had it done. In fact, they will probably be better off for having had their spines held straighter for so many years.

With this in mind, do you really and honestly think it would be fair for that child if a parent or guarian DELIBERATELY missed that crucial time period where something could be done in exchange for experimenting around with stuff like myofascial release, CLEAR, chiropractic, extensive bracing (thinking of Kat here, who by the way IS angry), or other "therapies" that haven't proven effective?

.....If I had found out later on that things like VBS or tethering (probably tethering in my case) had been available and I was subjected to all of that time consuming, ineffective torture, I would be LIVID to say the least.

On a personal note, I have a shirt-tail relative who's custodial parent denied her surgery (she had IIS or congenital - not sure which). By the time she was 18 it was surgery or die. Her noncustodial parent provided her access to surgery (which noncustodial parent wanted her to have all along). They did the best they could with the technology they had at the time, but it had gotten so bad that they couldn't get her very straight. She's been on disability for a very long time. She's now in her early 50's and she's progressed again. She's on oxygen and too frail to operate on. The doctors have only given her a couple of years to live. Now, when dealing with severe cases like this, how fair is it to the child to use "alternative" ineffective treatments when this is the outcome? Did "avoiding surgery" save this woman's life or take it prematurely?

What is ethical to put a child through? Since there is no "cure", is it ethical to withhold treatments that are proven to at least help?

But you, as parents, need to look at the long term consequences of the treatments you choose. Your children won't be children forever and what you choose for your child now WILL impact them as adults.


Rohrer,

I wanted to pull the parts of your post that really rang true and ended up taking just about all of it. I highlighted a few sections which echo precisely what I've basically been saying all along. (You may have said it better).

Other than that, I have nothing to add to your post except that I nominate it for post of the month.

mariaf
03-06-2013, 11:13 AM
I would fault a parent for choosing a treatment option that isn't working and continuing other unproven treatments until the window of opportunity has passed.

How do you classify parents that withhold desperately needed treatment? If they are in earnest effort taking their child to a chiropractor who keeps promising that they can help, yet the curve/s keeps progressing, are they neglectful? How would you prove that? You could substitue any other nonsurgical treatment in for the word chiropractor. What treatment are they withholding from a desperately needy child?

A case that often comes to mind for me was a mom I met about 5 or 6 years ago. She put her daughter in the Spinecor brace for what started out as a 30-ish curve. She had also inquired about VBS and that’s how we started talking to each other. I can’t recall exactly, but the child was somewhere around 10 when they began bracing (maybe give or take a year).

As most of you know, when a child wears the Spinecor brace, for some reason only in-brace x-rays are taken. I’ve heard the explanation given for why this is done but it makes no sense to me; and most reputable pediatric orthopedic specialists would agree that in order for an accurate measurement of any curve to be obtained, one’s brace needs to be off for a minimum of 24 hours.

But this mom, a good mom, trusted in what she was told and wanted to avoid any surgery whatsoever for her daughter, an understandable stance.

The child wore the Spinecor brace for a few years, and at each visit only in-brace x-rays were taken. The numbers may have fluctuated slightly but generally the in-brace x-rays showed a slight improvement (maybe 26 one time, 25 the next, etc.). Then at one visit the number crept up a little, over 30, and mom finally decided to take her daughter for an out of brace x-ray and get another opinion (at CHOP I believe).

The child’s curve measured in the 50’s and she ended up needing, and having, fusion. I can’t tell you how distraught mom was. I remember her calling me on the phone crying, blaming herself for the fact that her daughter now had only one option – fusion.

I’m not bashing Spinecor or blaming anyone for their decisions about their children, but I think this is an example of what Rohrer was trying to say…..

mariaf
03-06-2013, 11:17 AM
For AIS, especially in those growth spurts, only bracing and surgery seem to help.

Does anyone know the rate of success for bracing in cases of AIS? I seriously would like to know because I believe bracing definitely can help JIS kids, but I'm sort of on the fence in terms of AIS.

Pooka1
03-06-2013, 11:35 AM
Does anyone know the rate of success for bracing in cases of AIS? I seriously would like to know because I believe bracing definitely can help JIS kids, but I'm sort of on the fence in terms of AIS.

I have posted a direct quote from Sponseller, an expert in this field. He admits there is no good evidence bracing works. (He did not distinguish between JIS and AIS but I think he would make that distinction since bracing clearly has not only held some JIS curves but reduced them, at least prior to the growth spurt.) This is also why Hey can been seen on his blog as saying bracing pretty much can work in JIS (though he changed some wording slightly in response to a letter from Celia as I recall). He is more sanguine for AIS of course as far as I can tell. Here he talks in terms of balancing quality of life which is another way of saying the evidence isn't there in my opinion. If the evidence was there, he would simply say that.

And anyone who claims there is evidence bracing works in AIS has to explain the BrAIST study. That's probably combined 1000 years of experience among those surgeons that all agree it is ethical to randomize kids to a non-brace control group.

Pooka1
03-06-2013, 11:37 AM
For AIS, especially in those growth spurts, only bracing [...] seem[s] to help.

Please post the evidence for this statement. I think it is false.

Pooka1
03-06-2013, 11:43 AM
But, bracing is often effective and yet parents are strongly counseled *against* bracing on this forum.

Newton and co-author demonstrated an OVERtreatment rate of about 9 to 1. That means most kids who are braced do not need it. I think you are misinterpreting the kids who did not progress as being helped by the brace. The vast majority of braced kids are likely braced needlessly. This fact doesn't seem to register with many parents who, not having to wear the brace themselves, would probably brace with a 1%, 0.1% or 0.00001% chance of success. The kids who might have been helped are probably lost in the noise of the natural history and study analysis. That's the reality of it.

And there is some evidence that bracing might only delay fusion in some cases. So these kids will have brace AND fusion. These parents are running a risk of damaging their relationship with their kids later as can been seen in some testimonials.

Pooka1
03-06-2013, 12:06 PM
If you undermine the parent and suggest that doctors have no idea what they're doing but annonymous people on the net do, you run the risk of forcing that child into surgery.

The point is not that surgeons have no idea what they are doing. The only people who say that are the folk scientists.

The point is bracing is the standard of care. Given BrAIST, it seems like many surgeons are bracing as a form of defensive medicine against law suits. Who can blame them?

I am sure the majority would agree with Sponseller that while they are hopeful bracing works, there is no good evidence it works. Equally, I am sure a majority would agree with Newton and colleague that there is a HUGE over-treatment rate with bracing.

I think you have an issue with patients and parents being told facts if it doesn't come from the surgeon. You obviously could not object to surgeons stating EXACTLY what I have said but can't say that here. They don't cease to become facts just because a surgeon doesn't mention it.

Basically, you can't disprove my comments about the surgeons so all you can do is object to them being said AT ALL. It is outrageous that you think people should not be as informed as possible.

Pooka1
03-06-2013, 12:33 PM
With compliancy and full day wear, I believe it is quite high. Mayo clinic (if I remember right) would be the source on this - they cut their surgery rate by really stressing compliance and full day bracing.

Send a telegram to the BrAIST coordinator. Tell her to stop randomizing kids to a no-brace control group. I dare you.

By the way, that study hasn't been published yet to my knowledge. I last looked about a month ago. You are referring to a talk that was given. If he tried to publish it and failed, you need to know that so you stop posting misleading material.

Pooka1
03-06-2013, 12:38 PM
So, IMO, suggesting to parents that they ignore their doctor is just marching these kids right into the surgical room.

No actually the main effect would be to drastically decrease the over-treatment rate. Please read up on Newton's work (I don't know if it is published yet) and other work on this.

And there is the issue of fusion delay through bracing.

mariaf
03-06-2013, 01:09 PM
With compliancy and full day wear, I believe it is quite high. Mayo clinic (if I remember right) would be the source on this - they cut their surgery rate by really stressing compliance and full day bracing.

So, IMO, suggesting to parents that they ignore their doctor is just marching these kids right into the surgical room. Again, it's the only flagrantly unethical behavior I've seen on this forum.

Forget for the moment, what a challenge it is to tell a 12 or 13 year old to wear a brace full time, to school, with friends, etc. I could write a book about some stories I have heard. I just had dinner with a family whose daughter had tethering 3 or 4 months ago - and mom said that for the first time in a long time there was no crying, threatening, pouting or yelling going on in their house. She said that her daughter had become withdrawn and depressed when she had to wear the brace, and was just now starting to return to her old personality (which was always, according to mom, bubbly and happy).

Putting that aside for a moment, when you say that anyone is suggesting to parents that they ignore their doctor, this assumes that all doctors believe in bracing (I'm talking AIS here) and that's an incorrect assumption.

And I still would like to know what the success rate for bracing in AIS is.

To say that one facility (even though it's the Mayo Clinic which is well-regarded but not particularly known to specialize in treating scoliosis, or even children for that matter) has 'cut their surgery rate' really doesn't tell us what the bracing success rate for AIS is.

That was the question that was asked and I would still like to know the answer.

Pooka1
03-06-2013, 03:01 PM
Given the Mayo Clinic series, with no "gold standard" braced child progressing to surgery, is it ethical to tell those parents to ignore their doctor and not brace?

Yes it is ethical to give people information. It is always ethical to give people information. I know you disagree.

Not published yet...

http://www.ncbi.nlm.nih.gov/pubmed?term=O'Shaughnessy%20BA%5BAuthor%5D&cauthor=true&cauthor_uid=16122214

Small sample size and data selection were some of the issues I think were involved in this study. Whatever the issues, they prevented this study and everyone's favorite bracing study (TM), Katz et al., (2010) rise to the level of halting BrAIST. That is the bottom line.

The study problems may explain why it hasn't been published while the lead author is publishing all kinds of other studies. If it doesn't get published, can we count on you being honest and mentioning it was just a talk that wasn't published?

mariaf
03-06-2013, 03:34 PM
-In this series there was NO progression to surgery if:

-initial curve magnitude was less than 40 degrees and
-bracewear greater than fifteen hours per day"

I'm sure that's what may have happened "in this series" whatever that means in terms of number of patients, etc.

But I find it hard to believe that if you took thousands (or tens of thousands) of kids with 35-40 degree curves and had them wear braces 15 hours a day that none of them would progress.

In addition, where does that leave those who end up with, say 38 or 39 degree curves that are more likely to progress later on in the opinion of some experts?

I'm not saying that if I had a child with a 38 degree curve at the end of growth that I would necessarily have them fused - but they may need fusion later on - or they may have pain/other issues from their curve.

So would that patient have been better off being braced or, say, having tethering when they had the opportunity?

Who knows?

And that doesn't even touch on those kids (and we know they exist, albeit outside of "this series") whose curves progress despite bracing. They are left with only fusion once the window for what some like to call 'experimental' methods like tethering and VBS are off the table.

But, again, the question is 'does anyone know the success rate for bracing with regard to AIS'?

mariaf
03-06-2013, 03:42 PM
Given the Mayo Clinic series, with no "gold standard" braced child progressing to surgery, is it ethical to tell those parents to ignore their doctor and not brace?

Again, why are we taking this "series" which, if I understand correctly, is not even a published study and using it as the sole measuring stick? I think we are all intelligent enough to realize that data can usually be skewed to lean one way or another by choosing exactly which patients to include, etc.

For example, when the "series" (I still don't know exactly that is meant by that term as I have never heard it used before in this respect) referred to all patients with curves under 40 degrees, that could have been a group where the vast majority were WELL UNDER 40 degrees, even under 20 or 25 degrees. I'm just showing an example of what I mean by how easy it is to skew data, particularly when we're not even talking about a published, peer-reviewed study.

So the results of this "series" don't hold much water.

mariaf
03-06-2013, 03:48 PM
On the psychological effects, I don't mean to downplay the difficulty of brace wear....

I would hope not.

I agree that having scoliosis in general - or facing surgery of any kind, for a child, is nothing close to being easy.

But we were talking about the challenges of brace wear.

I'm not going to get into a long debate about it, but as the parent of 2 sons (now ages 14 and 25) and a daughter (age 21), my experience has been that one of the most difficult things for them during their teenage years is when something makes them obviously different from their peers.

Pooka1
03-06-2013, 04:18 PM
Here's the thread with a bunch of lay folks and one expert (McIntire) talking about that Mayo Clinic study...

http://www.scoliosis.org/forum/showthread.php?12723-More-Good-Evidence-Bracing-Works-in-AIS&highlight=mayo+clinic

Pooka1
03-06-2013, 04:22 PM
But the Mayo Clinic report sort of woke me up to something that seemed important.

You may or may not find it concerning that a study that may not be publishable is what woke you up. I'm guessing not.

flerc
03-06-2013, 07:39 PM
On ignoring doctors, I'm talking about parents who come on the forum after being prescribed a brace by their doctor. So, in those cases, 100% of their doctors have recommended it to them. Given the Mayo Clinic series, with no "gold standard" braced child progressing to surgery, is it ethical to tell those parents to ignore their doctor and not brace?

Of course is not ethical, but is all part of the same game. What may you say about doing hard categorical assertions without proving or blaming parents facing dramatic situations for not doing what they believe they must to do? Certainly it would be fine that at least, these people explain what kind of knowledge has about scoliosis. People new in this forum reading so many assertions and judgements may believe they are wise people, able to know what method may work for someone or not and why.. and of course just only reading articles has nothing to do with a real comprehension as people really new may confuse.

flerc
03-06-2013, 08:39 PM
I have posted a direct quote from Sponseller, an expert in this field. He admits there is no good evidence bracing works. (He did not distinguish between JIS and AIS but I think he would make that distinction since bracing clearly has not only held some JIS curves but reduced them, at least prior to the growth spurt.) This is also why Hey can been seen on his blog as saying bracing pretty much can work in JIS (though he changed some wording slightly in response to a letter from Celia as I recall). He is more sanguine for AIS of course as far as I can tell. Here he talks in terms of balancing quality of life which is another way of saying the evidence isn't there in my opinion. If the evidence was there, he would simply say that.

And anyone who claims there is evidence bracing works in AIS has to explain the BrAIST study. That's probably combined 1000 years of experience among those surgeons that all agree it is ethical to randomize kids to a non-brace control group.

And certainly, when these people talk about what a brace may do or not, if all their comprehension is reduced to articles readed, they should to understand that studies suggesting braces not works, only may have sense if were used under the obvious necessary conditions.

Pooka1
03-06-2013, 09:19 PM
And certainly, when these people talk about what a brace may do or not, if all their comprehension is reduced to articles readed, they should to understand that studies suggesting braces not works, only may have sense if were used under the obvious necessary conditions.

Fer,

If it is the case that many kids simply can't or won't wear a 23 hour a day hard brace, that is also an important result. Kids are more than their disease. They matter more than their disease.

flerc
03-06-2013, 09:49 PM
Yes of course, but surely they also don't want surgery. The claim should to be for something better not for discontinue braces. And certainly braces should not to be used in any case.

Pooka1
03-06-2013, 10:23 PM
http://www.ctsdmc.org/projects/braist/index.html


Bracing in Adolescent Idiopathic Scoliosis Trial (BrAIST)

This is a Phase III, multi-center, prospective randomized, partially blinded clinical trial, designed to determine whether the use of thoracolumbosacral orthoses (TLSOs) lowers the risk of curve progression in subjects with Adolescent Idiopathic Scoliosis (AIS) relative to observation (watchful waiting) alone. Bracing is currently the standard of care for the treatment of adolescent idiopathic scoliosis (AIS). Despite many years of research, the effectiveness of bracing is still in doubt, and it is not known with any certainty, which, if any, patients with AIS will respond favorably to bracing. The primary aim of the study will be to measure the relative risk of curve progression to greater than 50 degrees in the two treatment arms. This outcome is significant because it indicates a high risk for continued curve progression throughout adulthood, and is therefore the parameter at which fusion and instrumentation are generally indicated. We will concurrently measure and compare the quality of life and psychosocial adjustment of these adolescents. We will also estimate the relationship between bracing dose (wear time) and curve response to develop a predictive model for the outcome of curve progression.

(emphasis added)

My point in posting this material is not to have people ignore the advice of their surgeons. It is to give factual information on what experts in this field think.

The ongoing objections to presenting factual material are reprehensible in that they are objections to people being given information from experts in this field.

There are people on this group who seem to be against mentioning BrAIST if someone's surgeon didn't first mention it. That is unethical FULL STOP.

What is my point? It is to make it clear that nobody needs to ever feel like there is good evidence that they missed a boat by missing the bracing window or by not being compliant with bracing. Kids and parents have enough to worry about without beating themselves up over imaginary problems.

Pooka1
03-06-2013, 10:27 PM
Yes of course, but surely they also don't want surgery.

What is the evidence bracing has avoided a single surgery? It might have helped some kids avoid surgery but the treatment is so torturous that a rational person might want to see some damn good evidence of efficacy before trying. That doesn't mean a person who does want to try is not rational. It is not crazy if the child wants to try and is fully informed. It is unethical to make any noises whatsoever about linking brace wear to surgery avoidance for life (i.e., what patients think when embarking on bracing) with the evidence in hand.

Pooka1
03-06-2013, 10:32 PM
http://www.ctsdmc.org/projects/braist/background.html


The U.S. Preventive Services Task Force resolved in 1996 that screening asymptomatic adolescents for AIS was not warranted due to the lack of evidence that bracing halts the progression of curves. According to the report, population-based screening is based upon a set of critical assumptions, including that screening is ?accurate and reliable in detecting curves, that early detection of curves results in improved health outcomes, and that effective treatment modalities are available for cases detected through screening.? A key assumption of this causal pathway is that small curves noted during screening progress to curves of clinical significance, potentially resulting in significant health problems. A second assumption of this pathway is that early detection positively alters the clinical outcome.

Additionally, for the screening process to be considered useful the benefits of early detection must outweigh the potential adverse events of screening and treatment. The USPSTF concludes, ?Beyond temporary correction of curves, there is inadequate evidence that braces limit the natural progression of the disease.? The Canadian Task Force on Periodic Health Examination and its British counterpart have come to similar conclusions.

(emphasis added)

mariaf
03-07-2013, 09:17 AM
Yes of course, but surely they also don't want surgery. The claim should to be for something better not for discontinue braces. And certainly braces should not to be used in any case.

When you say 'surely they don't want surgery', of course nobody WANTS surgery. But many kids would choose it over bracing. When David was about to have VBS, he wasn't old enough to fully understand or be part of the decision-making process. But his sister, around 13 at the time, sensed that I was mulling over this decision in my head (I did NOT make it lightly) and being the dear, outspoken child that she's always been, said to me "Mom, you can't make him wear that brace to school when he gets older. If it was me, I would definitely want the surgery".

She gave me a teenager's view and it was very valuable.

It also echoes what I hear from parents of older kids who are, say 12 or 13, and who have explained things to their children and have made them part of the decision-making process. The vast majority of these kids, when given the choice of VBS (or now tethering) or wearing a brace for the next 2 or 3 years, choose to have surgery. The thought of wearing a brace at this time of their life, to middle school or maybe to freshman year of HS when they are starting a new school, is just too unbearable.

flerc
03-07-2013, 10:32 AM
Of course should to be something traumatic, at least in many cases, but surely none parent in the world (maybe kids of course) may refuse to use it, having the certainty that surgery (at least fusion) will be avoided. So is only a matter of chances.
I’m sure the brace protocol must to be changed. It would have not sense to accuse guns to be dangerous and ineffective because some people instead of shoot the attacker shoot to themselves.

And certainly, ‘evidence’ in something so complex, cannot be enough.. If I don’t found enough evidence saying it’s good or only some evidence suggesting is not good, then I conclude is bad. It could have sense if we would have a gigantic public data base containing the record of all cases where the method was used in the world and the outcomes. Otherwise, you only may say ‘I don’t know about any evidence’ instead of ‘There is no evidence’.

Of course, parents and everyone affected in a direct or indirect way by a serious health problem, should try to know about a similar case, what kind of solutions were used and the outcomes. But also to understand the problem in order to evaluate the situation, the chances, feasibility, cost/benefit, risks.. is something complex and of course the easiest way is to leave all the problem in the hands of some professional. But is not the professional who is suffering the effects of that problem. In the best case, he only will does his job the best he can.. regardless what kind of professional he is.. is the same if he is a surgeon, a chiropractor, neurosurgeon, physiatrist.. and is the same if the ‘solution’ to evaluate is a brace, surgery, swimming, Pilates or taking a bath every day.
Blind faith in the professional and the ‘solution’ should to come only after the choice was done, not before.. and only while it seems to work. Unfortunately the last may have not sense if the ‘solution’ chosen is irreversible.

So parents evaluating the convenience to ‘obey’ the doctor recommending brace, should to ask him about similar and successful cases. And should to have some idea about scoliosis in order to evaluate if it is a good idea in the case of their son or not.
Of course is something simple to say.

flerc
03-07-2013, 10:48 AM
Of course is something simple to say.

So much time in this forum?

Pooka1
03-07-2013, 07:47 PM
http://posna.gmetonline.com/PresentationSearch.aspx?fixedkey=~im4_j.xOb9x&subscriptionpackageid=84

Select 5/13/2011

Talk at 12:36 - Bracing for Adolescent Idiopathic Scoliosis: Determinants of Success

Presented By: William J. Shaughnessy, MD
Co-Authors:
Wendy S. Moon RN
Paper No. 55

In 2 months, this talk will be 2 years old. I am not saying he won't publish it or something based on the talk. This is not my field and it is a very difficult field. I am just saying here is what I gleaned from the 5 minute talk that might constitute reasons for why it might never be published in the peer-reviewed literature. And nobody should assume I would be surprised if it gets published... I am far beyond being surprised at what gets published in this field.

1. Huge data selection issue - only included patients who completed the treatment were included in the results. As I understand this business and I may not, the correct way to crunch this is intent to treat.

2. End point at skeletal maturity. They would not see the rebound that is seen in other studies after the brace is removed.

3. They compared 31 patients braced with the "old" method versus 57 patients braced with the "better" method.

4. Absolutely no mention of if the "successes" largely were the lumbar patients or not. Lumbar curves don't progress as often as thoracic curves. If this is not stated in the manuscript then I think this alone and all by itself should disqualify it from being published.

5. The "better" bracing protocol included at least a 50% reduction of the curve in brace. Yet everyone's favorite bracing study(TM), Katz et al. (2010) showed NO correlation between "success" and in-brace correction. This would need some discussion to say the least.

6. Minimum 3 month follow up though the average follow up was 32 months and ranged from 6 to 98 months. I thought it was known that a few months out of brace is not really the true picture but I don't know that. Then there is the issue of down the road where we know many people were thought to be bracing "successes" only to need fusion. Someone needs to study bracing delaying fusion and if that is good or bad.

7. The "old" bracing regime population had an average curve size that was higher (30*) compared to the "better" bracing regime (26*). This will skew the results to being better for the newer bracing regime because the curves are smaller. Also, I'd like to see all the numbers or at least the median.

8. HUGE(!) error bars! This similar to Katz et al. (2010). In other words, you can follow what the regime was and still the result might be all over the place. It is NOT predictive of outcome.

9. No progression to surgery (how many were in range and refused it?) among patients with initial curve <40* and >15 hours of brace wear per day. Doesn't say how many this is. Could be a only a few given a total study size of 57. He also doesn't say how many non-compliant kids who had a curve <40* also did not progress to surgery. We know separately there is a huge over-treatment rate with bracing so it has to be non-zero I would think.

The bottom line is this is a 5 minute talk and I am very sure he would hit most of the points I raised in a full length article. I may email him to ask if he intends to publish this material.

rohrer01
03-08-2013, 01:38 AM
On being obviously different from your peers - I have a son with a obvious kyphotic curve (his scoliosis is not obvious), so I know all about how hard it is for teens to be different from their peers. All medicine could potentially offer us was a fusion which is likely to move his curve up into an untreatable area of his cervical spine. Fortunately none of his doctors thought that was a good idea.. For us, one of those laughable alternative treatments (massage coupled with stretching and strengthening, in our case) completely changed his appearance and his self image.

Your son's scoliosis, like mine, is pretty much untreatable except for pain management. My curves aren't noticeable (in clothing) either. I'm hypokyphotic instead of kyphotic. But really the only things we CAN do for these really high curves are palliative in nature. Massage therapy certainly isn't an ineffective palliative treatment. Stretching and strengthening are certainly not laughable alternative treatments for pain. I've had all of that and more. These are NOT alternative treatments for scoliosis PAIN. They are pain management treatments and are completely legitimate for that purpose. Now used for the purpose of trying to gain curve correction, they would fall into the category of alternative, unproven and likely ineffective treatments. They may work, though, on young kids with certain curve types (probably not the massage, but maybe the stretching and strengthening).

This discussion is about curve correction. Your son's curve may not be as noticeable, but is it better in terms of degrees AND rotation? Has he developed a seconary curve that makes him "look" better? I'm not asking in sarcasm at all. The reason for me asking is because that is exactly what is happening to me. My shoulders are now even because I developed a second curve making me a double major instead of a single major. From a purely asthetic point of view, I look much better. Because my curves are up so high and I'm hypokyphotic, I have a VERY straight posture and stand evenly. Without clothing, though, my back looks quite odd. Some people that have seen it have actually gasped because my upper spine is sunken in so much that it creates a very large hole under my left scapula. Anyway, asthetically with clothes on, I look better. Some people would call that "success". I don't because I'm in more pain.

Why do discussions like this always boil down to bracing or not bracing? Bracing works for some kids and not for others. I think that the researchers and doctors need to get their heads together and IF they are going to brace a child, look more carefully at the progression. If the child is progressing despite the brace, then quit that treatment before the "window" closes. For kids already in that window, they should offer things like VBS or tethering rather than bracing. That would probably eliminate a lot of fusion surgeries and a lot of useless bracing. Hey, I'm just a layperson, so what do I know?

The bracing argument is old and so is the germ theory argument. They just seem to keep reappearing. There are many, many other threads that this is turning into a repeat of.

Pete and Repeat were sitting in a boat. Pete fell out. Who was left? Repeat...
Pete and Repeat were sitting in a boat. Pete fell out. Who was left? Repeat...
.
.
.
for infinity...

Pooka1
03-08-2013, 07:40 AM
Why do discussions like this always boil down to bracing or not bracing?

Because every once in a while we get someone claiming there is some study that constitutes good evidence that bracing works. In this most recent example, it is an almost 2 year old, 5-minute talk that still hasn't been published in the peer-reviewed literature. As such, this latest claim was easy to dispel.

What people are missing in making these claims is perspective. Bracing was declared effective few decades ago until researchers realized why those studies were nonsense. This literature is a trainwreck. Despite that, we have thread titles about bracing being shown to be effective, etc. etc. etc. Yet they are easily shot down and we never see BrAIST being halted immediately in response to any of these supposed knock-down studies. In a clinical trial where all the people in the treatment group were improving and nobody in the non-treatment control group were getting better, they would halt the trial and give everyone the treatment. This has happened. Yet that is NOT happening in BrAIST. People should ponder that before claiming there is good evidence bracing works.

Perspective always.

I wish there was a requirement to show ALL data points instead of binning the data. I suspect if Katz et al.. (2010) did that, we wouldn't be talking about that study much. It would become very clear very fast that you can't predict outcome from bracing both from the perspective of over-treatment and the inherent variable response to treatment.

rohrer01
03-08-2013, 09:07 AM
Because every once in a while we get someone claiming there is some study that constitutes good evidence that bracing works. In this most recent example, it is an almost 2 year old, 5-minute talk that still hasn't been published in the peer-reviewed literature. As such, this latest claim was easy to dispel.

Perspective always.



Yes, I know this. You made a reference to that thread. It's not you. Others are doing the rehash, too, and you are giving the counter argument. So, this whole "Western Medicine" bashing thread shouldn't boil down to the old bracing argument. Pretty soon there's going to be someone on here arguing the germ theory, too.

What I haven't seen done, and I'm waiting for Flerc to still clarify, is what constitutes "Western Medicine". That's what this whole thing was supposed to be about. Where's the line in the sand, so to speak, that distinguishes "Western Medicine" from _______________? I leave that blank because which alternative treatments don't fall into the category of the Western Medical Community? As far as I'm concerned, ALL of the stuff that has been discussed and argued falls within a global community of researchers and practitioners. Flerc has made his demands, but still hasn't drawn the line in the sand as to what he's talking about. We should know what medical community Flerc is making his comparison to. Bracing falls within the realm of the Western Medical Community as far as I can tell, yet there's no argument against it coming from the OP. He's waiting for demands to be met and I'm waiting for clarification. He says Hdugger "gets it", but I haven't seen anything here except the same monotinous arguments.

This topic is way too broad and boils down to ethics. Where's the ethics committee?

flerc
03-08-2013, 11:12 AM
As I said you many times before, you will never understand what I said here, which was my purpose and it have not any sense we continues talking at least in this thread. But anyway as you insist I must to say that in this thread I was not questioning the OFFICIAL (traditional is better?) Western Medicine COMUNITY (you forgot 2 words). If you have read the large thread I quoted you, it should to be really clear for you at least what I think it is.. and certainly the ‘definition’ I gave you of the OWMC in this thread should be enough to understand what I was saying and why I opened this thread, but again, you will never understand it and even if would have time to try it, I’m not able to explain you in a way different of all I explained you before.
You may believe I’m waiting for demands to be met if you want. Certainly for me is now mainly a brace thread. So I will talk about braces, ok?


It seems to be out of discussion here the evidence saying VBS works. I don’t know much about it but I remember it was called the internal brace. Is not crazy then to suppose both are following the same principle. I think VBS apply forces in order to align vertebral bodies. So I believe there is evidence saying that principle works.
I always read about the scoliosis vicious cycle and of course, it’s broken or close when holding the spine straight (I suppose is what VBS also does).
But I believe the Hueter-Volkmann law is not all. Certainly I think that if would not be true, anyway the curve will increase (surely lesser) until something redirects it.
I cannot be sure but anyway I am, that if in a magic way the normal vertebras shape would be restored, the curve would be reduced but not at all, I think that not in a great percentage.. muscles, ligaments, fascias, tendons, nerves, ribs, discs, organs, joints.. would remains altered and certainly the spine is not a large an unique bone.
Redirecting the growth force obviously should to be something good, probably not enough, but nobody says that braces cannot be combined with other methods following other principles. Obviously, something cannot not be considered useless if cannot work alone. Boxing alone may be a not much effective martial art, but is impossible (at least up to now) to imagine the MMA (Mixed Martial Arts) without the boxing practice.

There are physical reasons saying that a growing curve line, tends to grow more curve if forces are applied in the extremes and of course is what happens with the spine of someone having a frontal curve. Probably was not something obvious a half millennium ago (sure the Hueter-Volkmann law was unknown) when a surgeon designed the first brace.
But certainly regardless if Hueter-Volkmann law is the only reason or not, I believe I’m not mistaken saying there is evidence that the principle behind braces works!
But braces seems cannot apply a direct force in vertebral bodies as VBS does.. at least braces applying forces only in ribs. And certainly it seems obvious a risk of ribs deformation. What if the thoracic box is growing and the brace comprises it?
So the claim should to be for best braces, not for brace abolish, at least until VBS exists in every country and will not be doubts about non secondary effects, risks..
Why cannot be designed a brace redirecting the curve without (only?) pulling the ribs?
I don’t know much about braces, but I believe the Milwaukee seems to was in this direction.. but not exactly. Why cannot be designed a brace pulling up the spine without a (big) force applied to ribs?
We live in the 21 century. Someone may say something is impossible?

Pooka1
03-08-2013, 12:00 PM
So Fer, what's your opinion of the 5 minute POSNA talk? Does it convince you that bracing works? Should it convince anyone that bracing works?

flerc
03-08-2013, 12:51 PM
Sorry, I'm unable to seeing videos now. But please, copy the part when they talk about braces used under ALL the right conditions.

flerc
03-08-2013, 01:03 PM
Why cannot be designed a brace pulling up the spine without a (big) force applied to ribs?
We live in the 21 century. Someone may say something is impossible?

And certainly..do you believe or someone here is something impossible?

flerc
03-08-2013, 02:44 PM
I believe I’m not mistaken saying there is evidence that the principle behind braces works!

Of course ‘redirecting the growth force’ is not the unique ‘principle’ that should to be taken into account. and is not the only one working in braces.
It seems to be a fact something as a complex ‘Homeostasis’ system.. sure many here may explain it better.. apparently input signals arriving to the brain triggers orders to the neuromuscular system in order to keep the ‘right posture’. Propioception and vestibular system seems to be involved in it. I have read about something as a self body image the brain think must to be maintain. But the posture according to that image is not the right posture, is a curved posture and the brain is accustomed to it.
It seems after a time the body was forced to have a better posture, the brain is accustomed to the new posture and try to maintain it. I remember in other forum some members said that after surgery, they tended to keep an old and curved posture, of course impossible for them and after a time, they was accustomed to the new and straighter posture.

So braces are compatibles with this ‘principle’ too since a better posture is forced.

Pooka1
03-08-2013, 04:12 PM
But please, copy the part when they talk about braces used under ALL the right conditions.

Why do you assume there are "right" conditions? What is the evidence there are "right" conditions?

flerc
03-08-2013, 06:22 PM
If I would say the use of a cast for a broken leg need to accomplish certain conditions, you would ask me the evidence of such conditions?
Is the same of obvious for me in the case of braces. Is not for you?
But anyway, do you know about evidence saying there are not "right" conditions? Which?

Pooka1
03-08-2013, 06:28 PM
If I would say the use of a cast need to accomplish certain conditions, you would ask me the evidence of such conditions?
Is the same of obvious for me in the case of braces. Is not for you?

You are assuming there is some right set of conditions where bracing would work. Why are you assuming that? Maybe there are no right conditions such that the treatment is not effective for most people.


But anyway, do you know about evidence saying there are not "right" conditions? Which?

Do you have evidence that leprechauns DO NOT exist? Which?

flerc
03-08-2013, 07:40 PM
I'm saying there are certain conditions that need to be accomplished when someone use a brace.
If you want to kill a bear with a gun, there are also some conditions that need to be accomplished, for instance the gun should to have bullets, you should to shoot to the head of the bear not to yours..
I'm not asserting you could kill the bear, but if you say that is not possible and such conditions are not necessary.. prove it.
So..Prove braces don't works when are used under the right conditions!

Pooka1
03-08-2013, 08:09 PM
I'm saying there are certain conditions that need to be accomplished when someone use a brace.

How do you know what they are?

leahdragonfly
03-08-2013, 08:18 PM
Flerc,

I do not intent to enter this fray for long, but I just have to make two comments.

1. The Milwaukee brace has been largely abandoned by the medical community because it is considered to be inhumane. Would you like your daughter or son to wear this miserable contraption for years at a time?

http://www.google.com/imgres?imgurl=http://www.scoliosisnutty.com/images/milwaukee-brace.jpg&imgrefurl=http://www.scoliosisnutty.com/milwaukee-brace.php&h=404&w=600&sz=150&tbnid=ilyVjR5hVmBW0M:&tbnh=90&tbnw=134&prev=/search%3Fq%3Dmilwaukee%2Bbrace%26tbm%3Disch%26tbo% 3Du&zoom=1&q=milwaukee+brace&usg=__rR_jnHyLjv4PXYBL5LvA1PxFB0o=&docid=-_tlLXSammpxJM&sa=X&ei=B406UYrHBOK9ygGUsIDAAQ&ved=0CD4Q9QEwAw&dur=3498

I sure as hell wouldn't put it on my child for even one second.

2. VBS works by putting direct pressure on the growth plates which mechanically/physically causes the overgrowth of the affected side to slow down. This is a somewhat different principle and is much more direct than bracing. You are comparing apples to oranges.

flerc
03-08-2013, 08:29 PM
How do you know what they are?

Because without accomplishing those conditions, I cannot imagine how a brace may works

Pooka1
03-08-2013, 09:21 PM
Because without accomplishing those conditions, I cannot imagine how a brace may works

"The Argument from Personal Incredulity" is not a valid argument, Fer.

flerc
03-08-2013, 09:46 PM
Not is valid also for you. You are incredulous about braces may work and some conditions are necessary for that. Certainly you say are useless. I only am incredulous you may prove it. But I heard you.
And certainly the conditions I'm refering are not really obvious also for you?

Pooka1
03-08-2013, 10:37 PM
Not is valid also for you. You are incredulous about braces may work and some conditions are necessary for that. Certainly you say are useless. I only am incredulous you may prove it. But I heard you.

I am incredulous that leprechauns might exist.


And certainly the conditions I'm refering are not really obvious also for you?

Some people think prayer is a necessary condition. The point is there is no limit to the imagination of lay people.

flerc
03-08-2013, 10:53 PM
I am incredulous that leprechauns might exist.


I'm incredulous that japanese men may not reach 2 meters heigh.




The point is there is no limit to the imagination of lay people.

Yes, some of them imagine to be so important and have a knowledge so great that may do categorical assertions without prove in a public forum .

Pooka1
03-08-2013, 11:07 PM
Fer, this is how rational people function...

The person claiming something is true has to show the evidence it is true.

The other people who don't have evidence are allowed to sit back and be skeptical and doubt UNTIL the evidence is given. They don't have to disprove the claim although in the case of many alternative treatments, which are based on clear nonsense, we can disprove some of them from first principles.

Just like with claims of the supernatural. Until someone shows some evidence of the supernatural, rational people get to sit back and doubt the supernatural. That is the only intellectually honest position.

flerc
03-08-2013, 11:53 PM
Fer, this is how rational people function...


Fortunately we have here someone so clever and wise.




The person claiming something is true has to show the evidence it is true.


Certainly I would say about doing categorical assertions, but anyway, say that to whom said this 'There is no evidence any conservative treatment has prevented any surgery'



The other people who don't have evidence are allowed to sit back and be skeptical and doubt UNTIL the evidence is given. They don't have to disprove the claim


Yes, exactly what I'm doing.

flerc
03-09-2013, 12:49 AM
Flerc,

1. The Milwaukee brace has been largely abandoned by the medical community because it is considered to be inhumane. Would you like your daughter or son to wear this miserable contraption for years at a time?

http://www.google.com/imgres?imgurl=http://www.scoliosisnutty.com/images/milwaukee-brace.jpg&imgrefurl=http://www.scoliosisnutty.com/milwaukee-brace.php&h=404&w=600&sz=150&tbnid=ilyVjR5hVmBW0M:&tbnh=90&tbnw=134&prev=/search%3Fq%3Dmilwaukee%2Bbrace%26tbm%3Disch%26tbo% 3Du&zoom=1&q=milwaukee+brace&usg=__rR_jnHyLjv4PXYBL5LvA1PxFB0o=&docid=-_tlLXSammpxJM&sa=X&ei=B406UYrHBOK9ygGUsIDAAQ&ved=0CD4Q9QEwAw&dur=3498


As I know is used up today. Anyway you should to understand what I said, that certainly is different to promote the use of Milwaukee.



I sure as hell wouldn't put it on my child for even one second.


Also if you were sure that in this way she/he may avoid fusion? Do you want I copy a photo of the back during surgery? Again, I don't promoting his use.. I don't know if other braces are better and no so hard.


2. You are comparing apples to oranges.
Surely you are right.. as you talk it seems you have a great knowledge about these issues and I cannot say the same. if Vbs sellers as I remember refers to it as an internal brace, you should to explain it to them, otherwise people as you with a great knowledge, may think 'this people are comparing apples to oranges'
Certainly this comparing between braces and Vbs was the first lesson I had here about it.



Then there are braces that are used on the inside of the body (internally) to hold the spine in place such as growth rods (like MAGEC) and stables (VBS) and titanium ribs (VEPTR).




VBS works by putting direct pressure on the growth plates which mechanically/physically causes the overgrowth of the affected side to slow down. This is a somewhat different principle and is much more direct than bracing.


As I know Vbs as a brace used under the right conditions, both hold the spine with a reduction of the curve. But if I’m comparing apples to oranges, Vbs is not following a somewhat different principle and much more direct than bracing as you said, it should to be a totally different principle.
Correct me please but I believe the direct pressure on the growth plates has to do with doing more symmetryc the asymmetric vertebral growth, governed by Wolff’s law. A brace used under the right conditions also do the same, (but as I said in not a so much direct way as Vbs) because decompress the concave side, so the pressure is more even in both sides and if it is used under the right conditions, as Vbs works all the time. So I don't see a so great difference in the principles.. yes I see a great difference in the way these principles are applied, but I believe is possible to get a brace applying it in a best way.. why not?

Pooka1
03-09-2013, 09:21 AM
but I believe

This is faith. You have to switch to science and evidence to get anywhere. Your failure to do this is why you are struggling with understanding this material.

flerc
03-09-2013, 10:25 AM
This is faith. You have to switch to science and evidence to get anywhere. Your failure to do this is why you are struggling with understanding this material.

mm.. It would have been more correct to say 'I understand'. But if I was wrong (I ever assumed this possibility) I hear you. I'm interested in this issue.

leahdragonfly
03-09-2013, 10:32 AM
As I know is used up today. Anyway you should to understand what I said, that certainly is different to promote the use of Milwaukee.

Also if you were sure that in this way she/he may avoid fusion? Do you want I copy a photo of the back during surgery? Again, I don't promoting his use.. I don't know if other braces are better and no so hard.

Hi flerc,

as I mentioned previously, I do not intent to engage in arguing with you about bracing.

That said, I would NEVER put my child in a Milwaukee brace EVEN IF it was guaranteed to avoid surgery. If you read my signature you will see that I have been fused T8-sacrum. I also wore a brace in junior high so I have a unique perspective on bracing and surgery that many others don't have. It is really easy to be cavalier about the difficulty of bracing when you haven't worn one yourself. I wore a brace. I ended up my growth with two 20-degree curves. I should not have needed surgery. But my curves increased rapidly after age 40 with my lumbar curve ending at 47 degrees, highly degenerated and collapsing. I had surgery and now I can say my back is for the most part pain-free. I certainly don't love being fused, but I do love that my severe daily back pain is gone. Am I glad I wore the brace, no, I wish I never had to, because it did not save me from surgery.

Fast forward to my child, who at age 6 was diagnosed with scoliosis. I would have had to commit to keeping her in a brace for approx 8-10 YEARS. Years. Half of her childhood, 24/7. I elected to take her out of the brace after less than one miserable year because her heart was broken in it, and it was negatively affecting our relationship. Is that worth it to avoid surgery? Not at my house it's not. So she had stapling, and she has never looked back. To her it was wonderful. She describes 3 days of not feeling well, then there was no stopping her. There is no way she would have worn that brace to Kindergarten, much less elementary school or middle school. Surgery was the best option for her. True, it was only VBS, a much more minimal surgery than fusion, but it was still the best choice by far. And I am a nurse so I am fully aware of what the back looks like during surgery.

My young son has a curve currently around 15 degrees. We were offered bracing, which we declined, knowing full well he may need surgery. If/when his curve progresses he will have VBS if it is appropriate.

So to answer your question, would I make my child endure years of bracing to avoid surgery, no, absolutely not.

I hope my unique experience can add to your understanding of bracing and surgery.

Pooka1
03-09-2013, 10:43 AM
Beautifully stated. Completely child-centered.

I also would NEVER put my child in a Milwaukee brace even with a guarantee of avoiding fusion for life. Life is very short. Of course there is no guarantee with that or any brace so this is a moot point.

Bracing, other than night-time bending braces which are pretty well tolerated, is worse than the disease to many children. Unless and until they isolate any group of children who will avoid surgery for life, and then be able to tell the child they will avoid surgery for life if they wear a brace, this treatment will never be humane.

There are lots of parents who seem to be operating under an incomplete set of facts. And that goes double for the children. It's cruel.

Sharon


Hi flerc,

as I mentioned previously, I do not intent to engage in arguing with you about bracing.

That said, I would NEVER put my child in a Milwaukee brace EVEN IF it was guaranteed to avoid surgery. If you read my signature you will see that I have been fused T8-sacrum. I also wore a brace in junior high so I have a unique perspective on bracing and surgery that many others don't have. It is really easy to be cavalier about the difficulty of bracing when you haven't worn one yourself. I wore a brace. I ended up my growth with two 20-degree curves. I should not have needed surgery. But my curves increased rapidly after age 40 with my lumbar curve ending at 47 degrees, highly degenerated and collapsing. I had surgery and now I can say my back is for the most part pain-free. I certainly don't love being fused, but I do love that my severe daily back pain is gone. Am I glad I wore the brace, no, I wish I never had to, because it did not save me from surgery.

Fast forward to my child, who at age 6 was diagnosed with scoliosis. I would have had to commit to keeping her in a brace for approx 8-10 YEARS. Years. Half of her childhood, 24/7. I elected to take her out of the brace after less than one miserable year because her heart was broken in it, and it was negatively affecting our relationship. Is that worth it to avoid surgery? Not at my house it's not. So she had stapling, and she has never looked back. To her it was wonderful. She describes 3 days of not feeling well, then there was no stopping her. There is no way she would have worn that brace to Kindergarten, much less elementary school or middle school. Surgery was the best option for her. True, it was only VBS, a much more minimal surgery than fusion, but it was still the best choice by far. And I am a nurse so I am fully aware of what the back looks like during surgery.

My young son has a curve currently around 15 degrees. We were offered bracing, which we declined, knowing full well he may need surgery. If/when his curve progresses he will have VBS if it is appropriate.

So to answer your question, would I make my child endure years of bracing to avoid surgery, no, absolutely not.

I hope my unique experience can add to your understanding of bracing and surgery.

leahdragonfly
03-09-2013, 10:44 AM
Vbs is not following a somewhat different principle and much more direct than bracing as you said, it should to be a totally different principle.
Correct me please but I believe the direct pressure on the growth plates has to do with doing more symmetryc the asymmetric vertebral growth, governed by Wolff’s law. A brace used under the right conditions also do the same, (but as I said in not a so much direct way as Vbs) because decompress the concave side, so the pressure is more even in both sides and if it is used under the right conditions, as Vbs works all the time. So I don't see a so great difference in the principles..

Hi flerc,

I will try to help you understand VBS as you are not quite on the right track yet. The staples directly squeeze the growth plates on the convex side of the curve. They apply constant pressure to compress the growth plates themselves to slow down their overgrowth. That is the principle that causes VBS to work. The effect is not, as you had thought, that it straightens and thus unloads the spine. It is the direct pressure on the growth plates that works. Have you seen an x-ray of staples in place? It is helpful to see and I can post one if you are not familiar with how the staples are applied to the spine.

Bracing holds the spine in a straightened position which unloads the spine and simply hopes to keep the spine from curving further based on the Heuter-Volkman principle (which says pressure/compression on the growth plates causes growth to slow down, whereas traction or lack of pressure on the growth plates causes growth to speed up). Does that make sense? The physiologic difference in VBS vs bracing is somewhat subtle to the lay person, but very significant. Yes, VBS is frequently referred to as an "internal brace" because that makes sense to people. Nobody really wants to hear much about the Heuter-Volkman principle!

flerc
03-09-2013, 04:19 PM
Leahdragonfly, Thanks for your Vbs lesson. Certainly this is the kind of chat I want to have here. Really I hate so much the war against surgical and non surgical fans, brace fans and brace detractors.. I believe we have a problem in common, someone in much dramatic way than others, but we are in the same boat. And nobody here and probably in all the world may say to everyone, what is the best to do or not to do in each particualr case.

Certainly is a brillant idea compresing the convex side to slow down their overgrowth. I don’t know if I know about other case (probably thetering) of a solution (mainly a surgery one) not following the predominant paradigm of the official western medical community.. is an inteligent way to use the H-W principle. Certainly I have heard about cases of (surely) mild curves and a very much flexible spine, where the curve was reversed (form right to left) and holded with a brace, so the same mechanism was achieved. But even not talking about something so extreme, I understand braces (used under..) is also following the same principle since decopressing the concave side leads to more growth, but also compress more the convex side.. the mechanism is different and of course the procedure, but what I wanted to say is that Vbs (I remains conscious I may be wrong in what I’m saying) is the evidence known by everyone that the principle works! so if it may be used in a best way in braces than up today is used, they should to be more effectives.

I'll continue soon

flerc
03-09-2013, 09:09 PM
Not soon, sorry..
I perfectly understand your rejection for brace and thanks for share your story. You were lucky to get an alternative as Vbs for your daughter.. millons of people around the world has not this option in their country, and brace are shown as the only option in order to avoid fusion. I understand brace not worked for you and how traumatic was for your daughter. Certainly if not works has not any good side of course.. except delaying fusion, something not ever happening.

I absolutely respect your point of view, but I don’t agree brace even avoiding surgery is worse than fusion. Maybe comparing the worst, the more traumatic brace case against the best fusion case. But since brace is only for some years, I don`t believe many parents may decide for fusion. It's really what I think and of course I may be wrong.

But I’m not claiming that fusion has not to be used. I claim for replacing it for something better, since at least for me is impossible to imagine a way to improve it.. only replacing the bone for a variable consistency ‘bone’..
I think we should not claim to substract resources, we should claim to add resources, improve current resources or replace it for something better and Vbs cannot replace at least up to now braces.

And I’m sure braces may be improved.. without any doubt the protocol should to be updated. What kind of principle may act if it is used without a curve reduction? in a stiff spine? Only some hours per day? Which could be the sense? Maybe I has not enough imagination or knowledge, but I cannot understand it. Certainly not holding a reduction in a stiff spine I understand should to be something really dangerous, deforming the rib cage, making increase the curve inside the trunk..
Is the same for me to a protocol saying to jump with a heavy weight over the shoulders in a way that spine be collapsed. Which could be the sense? If would be done without collapsing the spine could have much sense. Few differences may lead to absolutely different outcomes.

I really agree with this I have read few days ago
‘The majority of studies on bracing acknowledge that compliance with brace wear is a major problem. A study on part-time bracing for AIS reported that although the average correction with part-time brace wear was less than that with full-time, compliance was better compared with studies involving full-time bracing (5). Perhaps the improved results of derotational casting compared with bracing, is because the cast cannot be removed so the corrective forces are applied 24 hours per day. If a brace was socially and cosmetically accepted so the patient would were it 24 hours per day, bracing may be a solution for the nonfusion treatment of AIS.’

If I’m wrong in what I think I wish to know it.. in the meantime I’ll continue thinking that people here should not continues trying to abolish braces but for


Something like that:

1) They should to advertise parents about the discomfort and probably traumatic situation that brace could provoke.
2) They should to advertise parents, that seems to be contradictory or not so much convincing studies about the high or low effectiveness of braces to avoid surgery.. and at least many of them not clearly says if they were used in the right way or not.. something that seems to not be clear what means for all.
3) They should to say parents that for everyone with a minimal rational mind and knowledge about physics laws and a basic knowledge about what scoliosis is, braces seems to be something so much important in an effective non surgical treatment trying to avoid surgery, if they are used under the right conditions.
4) They should to say parents that for everyone with a minimal rational mind and knowledge about physics laws and a basic knowledge about what scoliosis is, that the right conditions under which braces should be used are high compliance and reduction in brace and the best should to be combining it with other methods.
5) They should to advertise parents that surgeons seems to not include those conditions in the protocol and they are not giving any logic reason for that, except perhaps, what they may conclude assuming as a fact what they could have read in some of that studies, so is logic to suppose that the best would be to be sure that those conditions will be satisfied before beginning to use it.
6) They should to explain parents how they can have a good idea about that by themselves, if they measure the flexibility, that is, the lenght difference between being stand up and lying down.
7) They should to say parents about non surgical methods to gain flexibility if it is not enough.
8) They should to advertise parents that are not evidence of something good until end of life with fusion.
9) They should to advertise parents that there are absolute guarantees of bad and irreversible effects with fusion (it seems to not be any interest in reversing that fact).
10) And then, they should to leave parents to decide what could be the best for their sons, instead of eliminating options for them.

Thanks for hear me.

rohrer01
03-09-2013, 09:10 PM
As I said you many times before, you will never understand what I said here, which was my purpose and it have not any sense we continues talking at least in this thread. But anyway as you insist I must to say that in this thread I was not questioning the OFFICIAL (traditional is better?) Western Medicine COMUNITY (you forgot 2 words). If you have read the large thread I quoted you, it should to be really clear for you at least what I think it is.. and certainly the ‘definition’ I gave you of the OWMC in this thread should be enough to understand what I was saying and why I opened this thread, but again, you will never understand it and even if would have time to try it, I’m not able to explain you in a way different of all I explained you before.
You may believe I’m waiting for demands to be met if you want. Certainly for me is now mainly a brace thread. So I will talk about braces, ok?


First of all, you are questioning my intelligence by stating that I will never understand... What you are saying here in your thread is not consistent. You want people (Sharon) to quit insisting that the "Official Western Medicine Community" is the only option... It is a straight forward question to ask WHO the "Official Western Medicine Community" is. Define it an state what you are comparing it to. Alternative therapy is too vague of a term because many "alternative" therapies are within the "Official Western Medicine Community". I have read the whole thread. You admitted NOT reading posts before answering. If you don't believe me then go back and re-read your own thread. It is NOT my belief that you are making demands. This is what YOU said:


If you believe something as Pooka1 is suggesting that I don’t want to talk about that because I want to promote that some alternatives methods really works although not worked for me or something like that, I have nothing to talk with you any more, as I have not with her. It not imply I will not continue demanding what I’m demanding in this thread, where I will not talk about nothing not having to do with my demand, and of course what I believe or not about alternative treatments my knowledge or experiences with them and so on has absolutely nothing to do. This remember me the dark times of my country when people denounced of doing atrocities never was investigated, but yes who did the denouncement (in fact tortured and killed).

Now you claim that this thread is about bracing? You have said several times that you have nothing to talk with me anymore. Your reason? Is it because I keep steering your thread back to the original topic that you now seem to be avoiding? Is bracing the "alternative" treatment that you are angry about being denounced? If so, would it have not been so much easier to state that from the beginning? Oops, bracing is accepted in the "Official Western Medicine Community", notice I didn't leave out any words. I'm still waiting for you to clarify your demands (besides the one where you want Sharon to redact her statement) and clarify what the "Official Western Medicine Community" means to you. If you can't do that, this whole thread is pointless.

bold mine

flerc
03-09-2013, 09:35 PM
Something like that:

1) They should to advertise parents about the discomfort and probably traumatic situation that brace could provoke.
2) They should to advertise parents, that seems to be contradictory or not so much convincing studies about the high or low effectiveness of braces to avoid surgery.. and at least many of them not clearly says if they were used in the right way or not.. something that seems to not be clear what means for all.
3) They should to say parents that for everyone with a minimal rational mind and knowledge about physics laws and a basic knowledge about what scoliosis is, braces seems to be something so much important in an effective non surgical treatment trying to avoid surgery, if they are used under the right conditions.
4) They should to say parents that for everyone with a minimal rational mind and knowledge about physics laws and a basic knowledge about what scoliosis is, that the right conditions under which braces should be used are high compliance and reduction in brace and the best should to be combining it with other methods.
5) They should to advertise parents that surgeons seems to not include those conditions in the protocol and they are not giving any logic reason for that, except perhaps, what they may conclude assuming as a fact what they could have read in some of that studies, so is logic to suppose that the best would be to be sure that those conditions will be satisfied before beginning to use it.
6) They should to explain parents how they can have a good idea about that by themselves, if they measure the flexibility, that is, the lenght difference between being stand up and lying down.
7) They should to say parents about non surgical methods to gain flexibility if it is not enough.
8) They should to advertise parents that are not evidence of something good until end of life with fusion.
9) They should to advertise parents that there are absolute guarantees of bad and irreversible effects with fusion (it seems to not be any interest in reversing that fact).
10) And then, they should to leave parents to decide what could be the best for their sons, instead of eliminating options for them.

Certainly I should to update this.. probably in that way..

11) They should to advertise parents, that negatives factors of (rigid) braces as muscular weakeness seems to be a fact .
12) They should to advertise parents, that probably is inevitable with current braces some deformation of the rib cage.
13) They should to advertise parents, that probably with current braces is inevitable an increase of the curve, so a follow up is absolutely necessary and if this is the case, surely the best would be remove it inmediately.
14) They should to advertise parents, that traumatic situations, bad emotions may turn worst the situation.

Pooka1
03-09-2013, 10:08 PM
I absolutely respect your point of view, but I don’t agree brace even avoiding surgery is worse than fusion.

Maybe you don't agree because you don't have to wear the brace. Just spit-balling here.


But since brace is only for some years, I don`t believe many parents may decide for fusion.

This makes no sense. Deciding not to brace does NOT mean choosing fusion. That would only make sense if braces were guaranteed to work which they are NOT.

Deciding not to brace means acknowledging that the evidence just isn't there to justify the effort. That's not to say a child could not still choose to brace after being informed of the evidence case. But I seriously doubt many kids who were told about the situation would wear a 23 hour/day hard brace for years.

Pooka1
03-09-2013, 10:21 PM
As regards BrAIST, I do not know how they will get much compliance. The kids KNOW that half will be given no brace and they would not do that if the treatment was effective. If the treatment was effective, everyone would be getting a brace. It just seems like such a hard study to do.

flerc
03-09-2013, 10:29 PM
Maybe you don't agree because you don't have to wear the brace. Just spit-balling here.


Or maybe you don't agree because you have not a great percentaje of vertebras fixed for ever or you never was facing that possibility. Just spit-balling here? Now I agree.



This makes no sense. Deciding not to brace does NOT mean choosing fusion. That would only make sense if braces were guaranteed to work which they are NOT.


I was refering I don't believe parent may decides (if they might) as the less evil, fusion than brace, of course assuming brace will avoid surgery.



Deciding not to brace means acknowledging that the evidence just isn't there to justify the effort. That's not to say a child could not still choose to brace after being informed of the evidence case. But I seriously doubt many kids who were told about the situation would wear a 23 hour/day hard brace for years.

Do you want to say something as 'not found an evidence'?.. really different to say 'there is no evidence'.
In this case I cannot say I not agree at all with all you said.

mariaf
03-09-2013, 10:34 PM
Also if you were sure that in this way she/he may avoid fusion?

The operative word here is MAY avoid fusion.

But nobody seems to know what the odds are on that being the case - or not.

Pooka1
03-09-2013, 10:34 PM
Or maybe you don't agree because you have not a great percentaje of vertebras fixed for ever or you never was facing that possibility. Just spit-balling here? Now I agree.

What is the evidence a fusion can be avoided by bracing? It is therefore irrelevant whether I know or don't know what that is like. All I can do is accept reality. Just because we want there to be an effective treatment to avoid fusion does't magic it into existence.

mariaf
03-09-2013, 10:39 PM
[QUOTE=Pooka1;147859]I also would NEVER put my child in a Milwaukee brace even with a guarantee of avoiding fusion for life. Life is very short. /QUOTE]

Life is very short indeed - and for a child who is braced all during childhood (as would have been the case for my son without VBS) they don't get any do-overs.

Kids only get one childhood.

For many children, adolescents and their parents, spending one's childhood in a brace in the hopes it MAY avoid surgery just isn't worth it.

flerc
03-09-2013, 10:50 PM
The operative word here is MAY avoid fusion.

But nobody seems to know what the odds are on that being the case - or not.

I believe Leahdragonfly understood me, obviously it has not sense to say MAY instead of WILL as I should have to say.

flerc
03-09-2013, 10:56 PM
What is the evidence a fusion can be avoided by bracing?

Try to find it. But not get conclusions assuming there are not.

flerc
03-09-2013, 11:03 PM
[QUOTE=Pooka1;147859]I also would NEVER put my child in a Milwaukee brace even with a guarantee of avoiding fusion for life. Life is very short. /QUOTE]

Life is very short indeed - and for a child who is braced all during childhood (as would have been the case for my son without VBS) they don't get any do-overs.

Kids only get one childhood.

For many children, adolescents and their parents, spending one's childhood in a brace in the hopes it MAY avoid surgery just isn't worth it.

It seems we may continues for ever.. I may say teens only have a teenager.. adults only have an adulthood..
it depends how great is the MAY.. and you may replies something else.. There are not polls in this forum???

mariaf
03-09-2013, 11:29 PM
I believe Leahdragonfly understood me, obviously it has not sense to say MAY instead of WILL as I should have to say.

Flerc,

I'm not sure I am understanding you. Are you asking 'would parents brace if it WILL avoid surgery'? That question would be pointless because nobody can say it WILL avoid fusion.

Again, maybe I am not understanding what you are saying.

mariaf
03-09-2013, 11:32 PM
[QUOTE=mariaf;147880]

It seems we may continues for ever.. I may say teens only have a teenager.. adults only have an adulthood..
it depends how great is the MAY.. and you may replies something else.. There are not polls in this forum???

If you mean how likely is it that bracing MAY avoid fusion, we may never know that answer to that. Certainly nobody knows the answer now. So I am not sure what your point is here. Maybe it's a language issue and you mean something else. If so, please clarify - thanks.

flerc
03-10-2013, 12:16 AM
Flerc,

I'm not sure I am understanding you. Are you asking 'would parents brace if it WILL avoid surgery'? That question would be pointless because nobody can say it WILL avoid fusion.

Again, maybe I am not understanding what you are saying.



I also would NEVER put my child in a Milwaukee brace even with a guarantee of avoiding fusion for life.
I was doing the question of this answer.

flerc
03-10-2013, 12:21 AM
[QUOTE=flerc;147883]

If you mean how likely is it that bracing MAY avoid fusion, we may never know that answer to that. Certainly nobody knows the answer now. So I am not sure what your point is here. Maybe it's a language issue and you mean something else. If so, please clarify - thanks.

Yes, Parents assumes of course some chance of succesful and decides in order to that chance. For parents assuming for instance around 90%, I'm sure at least the 95% would not refuse brace.

mariaf
03-10-2013, 08:54 AM
[QUOTE=mariaf;147885]

Yes, Parents assumes of course some chance of succesful and decides in order to that chance. For parents assuming for instance around 90%, I'm sure at least the 95% would not refuse brace.

I'm not sure I agree that 95% of parents woud choose bracing their child for several years over VBS, particularly if the child was adamantly opposed to bracing - but I assume you are talking about choosing bracing over fusion. That, too, gets dicey because often it's not a choice between the two anymore with the emergence of things like VBS and tethering.

What I mean is - let's say a child is told to wear a brace for 3 or 4 years until they are done growing. That child would very often also be a candidate for either VBS or tethering. (Not so much tethering because tethering is performed on curves above 35 degrees, so if we are talking for example about a child with a 45-50 degree curve, I think we can all agree that bracing would be futile. But there are also cases where tethering is performed on curves of 35-40 degrees, so I will include it in the discussion).

I know if they said to me when my son was facing 8 or 9 YEARS of full-time bracing "here, make him wear this brace his entire childhood and there is a 90% chance he won't ever require any sort of surgery" I would still have opted for VBS to give him the chance at a normal childhood. That's just me though.

In any event, I don't think we should spend too much time discussing what parents would do if the bracing success rate was 90% because clearly it isn't. I'm not sure anyone even knows what it is. We may never know.

I think I understand though that you were just giving an example of what would happen IF the odds were that high, but they aren't so it's probably best to deal with the facts and options as they exist today.

flerc
03-10-2013, 09:33 AM
I think I understand though that you were just giving an example of what would happen IF the odds were that high

Exactly!



but they aren't so it's probably best to deal with the facts and options as they exist today.

..
I may agree they are not high but because the protocol as I said, not because braces!

Up today Vbs and others are not available in every country and many people need a solution today!
And certainly I suppose many people may be afraid about secondary effects.. anyway of course is the options would only be something useless and dangerous as some people here are saying braces are, fussion (or a high risk to having it) and Vbs and others.. of course if Vbs and others would be the only one rational option but I don't believe is what is happening today. If someone not agree must to give a rational justification why, as I did.

Pooka1
03-10-2013, 09:58 AM
Exactly! I may agree they are not high but because the protocol as I said, not because braces!

How do you know this? This is only a faith position, not a scientific position. NOT useful.


Up today Vbs and others are not available in every country and many people need a solution today!
And certainly I suppose many people may be afraid about secondary effects.. anyway of course is the options would only be something useless and dangerous as some people here are saying braces are, fussion (or a high risk to having it) and Vbs and others.. of course if Vbs and others would be the only one rational option but I don't believe is what is happening today. If someone not agree must to give a rational justification why, as I did.

Braces are only an option if they work. What is the evidence they work? If there is no evidence then people are bracing on faith. NOT useful.

Pooka1
03-10-2013, 10:09 AM
Fer, this bracing discussion is not the topic of your original post. I agree with Rohrer that you started this thread about non-western medicine and yet you won't even define what you mean.

I think your topic was alternative treatments by lay people such as most of the ones you have posted about. You want people to disprove those, yes? No trained person has the time to disprove every wacky idea that pops into a lay person's head.

Please define what non-western medicine is in your mind and then pony up the evidence for same.

Thanks in advance.



First of all, you are questioning my intelligence by stating that I will never understand... What you are saying here in your thread is not consistent. You want people (Sharon) to quit insisting that the "Official Western Medicine Community" is the only option... It is a straight forward question to ask WHO the "Official Western Medicine Community" is. Define it an state what you are comparing it to. Alternative therapy is too vague of a term because many "alternative" therapies are within the "Official Western Medicine Community". I have read the whole thread. You admitted NOT reading posts before answering. If you don't believe me then go back and re-read your own thread. It is NOT my belief that you are making demands. This is what YOU said:



Now you claim that this thread is about bracing? You have said several times that you have nothing to talk with me anymore. Your reason? Is it because I keep steering your thread back to the original topic that you now seem to be avoiding? Is bracing the "alternative" treatment that you are angry about being denounced? If so, would it have not been so much easier to state that from the beginning? Oops, bracing is accepted in the "Official Western Medicine Community", notice I didn't leave out any words. I'm still waiting for you to clarify your demands (besides the one where you want Sharon to redact her statement) and clarify what the "Official Western Medicine Community" means to you. If you can't do that, this whole thread is pointless.

bold mine

flerc
03-10-2013, 11:04 AM
Do you want I quote have many threads here began talking about the topic and then turned to another else? And certainly I not think members doing it gave a justification as I gave.


First of all, do you agree with my assertion []

[the categorical assertion
'There is no evidence any conservative treatment has prevented any surgery' and hundreds meaning the same

is at least a so much convincing argument to believe what follows in those posts:

‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

or not?


And certainly Pooka1, it has not any sense to contimue talking about this with you any more..

I take your silent as a Yes. Of course is something so much convincing to hear this.. Oh my good! There is no evidence about just only one case! Why may I expect to be the first? What kind of ignorant desperate idiot am I?
If someone is sure to have only one option, of course will decide to take it and of course trying to think it will be a good option and having a great hope that his life would be better.
What if then, even the surgery was a great success, he realize his life is worst, the worst he never imagines could be?
And what if then he sees an evidence that a non surgical method prevented one surgery? What do you think he may feel against you and this forum?

But sure not worry you to think that.. sure you may argue something convincing in order to continues doing your job here free of guilt.
So say what you wants and continues doing your job for ever. Certainly at least by now I have not any interest in entering to this thread any more, but I will not feel me any more an accomplice seeing what happens here and not doing anything against it.

I have felt interest again in this thread when I have read comments about braces.. something wrong?

You perfectly know what the OWMC is for me and as I said to Rohrer01, I gave an enough definition here in order to undertand what I was saying and quoted a thread where is absolutely what means for me and not only for me of course.

But you have all the time of the world and certainly you are not wasting your time, you are doing your work here.. is not my case so I don't want to talk about something loosing the focus and leading to not ending discussions as you ever does when you cannot show rational arguments (allways as I remember).. you try to fed up doing it and of course is working., but anyway, when you responds me that question and not refuse any more to put in evidence (talking with me about it), how much unethical is what you are doing here I'll respond
what is for me the OWMC, ok?

Pooka1
03-10-2013, 11:28 AM
The only thing that matters is evidence. The rest of this might as well be singing.

flerc
03-10-2013, 12:24 PM
The only thing that matters is evidence. The rest of this might as well be singing.

I may agree with it, in order to does categorical assertions as you did (and really convincent for new users here) and will continues doing for ever without shoving evidence in order to do it, as I was demanding you to do.
But you may be enough sure about something in order to say it and doing a claim even you not shows an evidence. The requirements in this case would be to show a rational justification as I think I did (do you not agree?).. but anyway.. I'm thinking it would be more correct to not claim for a protocol update.. I change that claim for this:

BRACE PROTOCOL SHOULD TO BE EVALUATED TO DETERMINE IF IT COULD BE IMPROVED IN ORDER TO DO BRACES MORE EFFECTIVE, TALKING INTO ACCOUNT SCIENTIFIC EVIDENCES AND ALSO NEW TECHNOLOGIES.

leahdragonfly
03-10-2013, 12:37 PM
BRACE PROTOCOL SHOULD TO BE EVALUATED TO DETERMINE IF IT COULD BE IMPROVED IN ORDER TO DO BRACES MORE EFFECTIVE, TALKING INTO ACCOUNT SCIENTIFIC EVIDENCES AND ALSO NEW TECHNOLOGIES.

Hi flerc,

I am not sure what you mean by the above statement (and don't forget, writing in all caps is considered very aggressive, like shouting).

There are medically-accepted brace protocols that are the generally accepted standard of care. The SRS has a bracing handbook that you can read if you do a Google search for it. The SRS protocol includes in-brace correction of at least 50%. I am not quite sure who you mean when you refer to "they." It is very vague and nods to a conspiracy theory. It would be helpful if you could try to clarify what you mean.

It sounds like you are saying that most bracing failures are because of a stiff spine and poor in-brace correction. I must disagree with this. I for example had my twin 35-degree curves reduced in brace to under 15 degrees each. My mom kept all my old records. My curves temporarily decreased to around 20 degrees when I finished bracing. An yet, here I am at age 45 fused due to progression. Go figure.

Also, as far as I know, there has been essentially no successful new technology in bracing in recent history. The ubiquitous Boston brace I suffered to wear in 1980 is exactly the same as the Boston brace of today, over 30 years later. I know because my daughter had one just like mine. I can't even begin to describe how upsetting it was to see her in that brace.

This is one reason why people are frustrated and angry about your posts flerc.

Pooka1
03-10-2013, 12:48 PM
I may agree with it,

I have noticed that people who don't have to wear the brace themselves may or may not be interested in evidence. Have you noticed that? People who do have to wear the brace obviously would always be keenly interested in evidence. That's the difference.


BRACE PROTOCOL SHOULD TO BE EVALUATED TO DETERMINE IF IT COULD BE IMPROVED IN ORDER TO DO BRACES MORE EFFECTIVE, TALKING INTO ACCOUNT SCIENTIFIC EVIDENCES AND ALSO NEW TECHNOLOGIES.

You are still assuming that there is some magic brace protocol that will guarantee no fusion for life. That is a faith position. That is an assumption. There is no guarantee that there is any protocol that will work. And there are kids who are going to be wearing these braces in these studies that may show bracing will never be a guarantee to avoid surgery for life. What about them?

titaniumed
03-10-2013, 04:52 PM
There is no guarantee that there is any protocol that will work. And there are kids who are going to be wearing these braces in these studies that may show bracing will never be a guarantee to avoid surgery for life. What about them?


It is difficult trying to accept what we have....the “acceptance” phase was really hard for me back in the 70’s and you might say that I rejected it....most of it. The surgeons back then didn’t suggest bracing for me in 1975, it was all about exercise and staying in shape. These guys knew, and didn’t exactly offer a plan with any “confidence”.....Since everyone was wishy-washy about my future, the stop sign came up. How could I proceed with any plan of attack???? Everything really was experimental.....Drive a truck up on my rib hump? Sure, that will work. Lets push and push hard.....I accepted and waited 34 years.....degeneration ran its course, and surgery became acceptable and the only option.

I was a Luque wire candidate back then and always knew that some day I would have surgery. I accepted this fact that no matter what plan of attack I had, that nothing was guaranteed. Nothing ever is really..... We as patients need to accept this fact, parents do also. Sometimes, you do get a bad bottle of wine but its not the end of the world. You simply switch to beer! Having a wedged L5 right from the get go is a bad bottle of wine....

Man has been bracing and pulling and pushing curves with many devices for many years. I guess this is fine as long as the patient can handle it, but even after a correction of some sort at a young age, the body being as complex as it is, changes. This change that happens, is so complex that even with studies, this needs to be analyzed also. The ageing question. Hmmm.....There are too many factors. We are still a very very long way off.

I hate to pop the balloon on all of this but answers to difficult questions are never simple or easy. It doesn’t make sense worrying about things that cannot be answered easily. Yes, its good to persevere, but it should be done with a grain of salt and a smile. Brace with a grain of salt...operate with a grain of salt.....and take it one day at a time.

We keep sending probes to Mars with some sort of solution because we are destroying our planet. This is nice..... but in reality, expecting this to happen, packing up and jumping ship because we as humans are on the wrong track, isn’t wise. I almost feel the same way about bracing. How long does it take to realize that this is the wrong way to approach this? We need new ideas, a different plan of attack. Ask different questions.

We don’t need a fire hose, we need to know why the house caught on fire.

Ed

flerc
03-10-2013, 07:05 PM
This is one reason why people are frustrated and angry about your posts flerc.


What people? As Pooka1 claiming for brace discontinuing only repeating and repeating for ever 'there is no evidence showing it works' (or I missed something?)? If these is the people you are refering for, I may understand why. I'm not suggesting may be your case. You did logics comments and If I'm not wrong, you also are claiming for the same, but you not refuse to talk about it in a logical way as I have seen.


Hi flerc,

I am not sure what you mean by the above statement (and don't forget, writing in all caps is considered very aggressive, like shouting).

There are medically-accepted brace protocols that are the generally accepted standard of care. The SRS has a bracing handbook that you can read if you do a Google search for it. The SRS protocol includes in-brace correction of at least 50%. I am not quite sure who you mean when you refer to "they." It is very vague and nods to a conspiracy theory. It would be helpful if you could try to clarify what you mean.

It sounds like you are saying that most bracing failures are because of a stiff spine and poor in-brace correction. I must disagree with this. I for example had my twin 35-degree curves reduced in brace to under 15 degrees each. My mom kept all my old records. My curves temporarily decreased to around 20 degrees when I finished bracing. An yet, here I am at age 45 fused due to progression. Go figure.

Also, as far as I know, there has been essentially no successful new technology in bracing in recent history. The ubiquitous Boston brace I suffered to wear in 1980 is exactly the same as the Boston brace of today, over 30 years later. I know because my daughter had one just like mine. I can't even begin to describe how upsetting it was to see her in that brace.


I perfectly understand your frustration against braces, so I'll explain my point of view with an example.
Suposse centuries ago a surgeon discovered a method to improve scoliosis consisting in jumping with some weight on the shoulders.There are logic reasons to believe it may be something good (at least for me) and the standard protocol in the watch and wait stage (surgeons use to named states with the only one ‘solution’ recommended) recommends to use it . So it would be called the jumping stage. But suppose the wieight is holded with an uncomfortable and galling artefact and the weight used not depends on how much big or strong are the kids.
You may heard people saying.. my thin and little 9 y.o. son should have to be hospitalized after 5 hours jumping with 20 kgs over his shoulders, after just only 3 months his curve of 18º increased to 45º. Death to the jumping method! Surgeons, what kind of inhuman people do you are?
But you also heard about more big, older and strong kids that jumping with only 8 kgs holded by a not so much galling artefact, seems to reduced their curve.
You also heard about similar cases but the curve was to worse.

Is the jumping method something unhuman or is the protocol, not taking into account obvious issues?
I may say you I'm sure at least in some countries, surgeons not follows a strict protocol saying that braces only may be used with a 50% reduction.. also not 40%. I never heard anything about flexibility evaluation (you may force a reduction in a non flexible spine). Also I'm almost sure there are not an earlier follow up in order to determine if the trunk is growing in one direction and the spine in other different and removing it inmediately when it happens. Compliance not depends only on surgeon recommendations and also not the different kinds of braces, which as you said not incorporetes anything new in decades. La Brace may be the only exception.

And why it should to be used alone? It's because is shorter to say 'brace stage' than 'brace, method1. method2...methodn stage?
And anyway as everything up to now, may not be a cure for scoliosis in every case, wihout imppling is useless. If something known like that exists, we would not be here.. there would not be scoliosis forums..
So braces not should to be discontinues at least until would be clear that used ever in the right way not in cases seeming to be not apropiated, anyway shows to be ineffectives .. or something definitely better, will be available for the same people.

I’m not here for doing any work, I have not any interest in something as competitions or wining discussions only for wining.. if you showed me I’m really wrong in what I say, specially if you do it in a respectful way, I will say say you something as leahdragonfly, thanks for let me see how absurd was all what I was saying. When I talk abourt scoliosis I have not proud. If I seems agressive to you is because this is far to be a friendly forum. Do you have idea how many members leave it for ever after suffering agressions? How many thinking in the same way like me refuse to participate because are afraid to be agreded? Sure I am one of the oldest survivour here thinking in a different way.. and I'm not refering specifically to brace. I did not open this thread because it.

flerc
03-10-2013, 07:39 PM
You are still assuming that there is some magic brace protocol that will guarantee no fusion for life. That is a faith position. That is an assumption. There is no guarantee that there is any protocol that will work. And there are kids who are going to be wearing these braces in these studies that may show bracing will never be a guarantee to avoid surgery for life. What about them?

Do you are following the ' turning fed up' resource or you really believe I'm assuming that? In the first case, you are not a person taken care to not show unethical behaviours (to say iit in a friendly way). In the second, you are not a person taken care to analyze something before saying it (to say it in a friendly way). What do you prefer I think?

Pooka1
03-10-2013, 08:40 PM
What do you prefer I think?

I prefer you think scientifically and about evidence.

flerc
03-10-2013, 08:45 PM
I prefer you think scientifically and about evidence.
About you?.. not good choice..

Pooka1
03-10-2013, 08:46 PM
About you?.. not good choice..

About everything. Science is the only game in town.

This all boils down to brain science. Everything. The rest is commentary.

flerc
03-10-2013, 08:57 PM
About everything. Science is the only game in town.

This all boils down to brain science. Everything. The rest is commentary.

You should to think in that before saying something here.

Pooka1
03-10-2013, 09:02 PM
You should to think in that before saying something here.

"To be hurt and forgive is saintly but far beyond this is the power to understand and not be hurt..." -- Greatest Holy Leaf

flerc
03-10-2013, 09:18 PM
"To be hurt and forgive is saintly but far beyond this is the power to understand and not be hurt..." -- Greatest Holy Leaf
few scientific would you say.. certainly not just only repeating science science all the day someone may think and reasoning in a rational and logic way.

Pooka1
03-10-2013, 09:23 PM
Fer,

What happened?

What happened that made you so mad? I hope your daughter is okay.

flerc
03-10-2013, 09:46 PM
Fer,

I hope your daughter is okay.
Thanks! I sincerely expect the same for your twins!!



What happened?

What happened that made you so mad?

Ha!!! You really are a Master, I ever recognized it. I say you once I woud have enjoy very much to confront you in a Politics Forum.. Unfortunately this is not the kind of forum for such kind of dirty debates.

You should to realize that if we have (you or I) the evidence, we would know and show the evidence, would not be discussion. Discussions only may have sense in the absence of evidence. So what you are doing in this discussion? You only are able to discuss knowing/having evidence. It has not sense, is an absurd. And certainly you not discuss. You only repeat and repeat 'Where is evidence?' This is science for you? You believe scientists not discuss? If you are not able to arguing you should to assume it instead of repeating and repeating ever the same non sense.. tell me.. why you do it?

flerc
03-10-2013, 09:57 PM
tell me.. why you do it?

Do you want to say me that by PM?.. I miss those forums!! It would have been really very very nice and funny to meet you in those sites..

jrnyc
03-10-2013, 10:00 PM
words like "unethical behavior" and implying a
lack of analysis before thinking do not apply to Sharon...
thank you for your continuing contributions, Sharon,
but i give up on all the ludicrous nonsense being spewed AT you.
i think those of us who know Sharon's intelligence, ethics, and knowledge
need read no more nonsense from a viewpoint refusing to adhere to any
kind of ethics...at least, i need no more of it.

jess

flerc
03-10-2013, 10:26 PM
First of all, do you agree with my assertion []

[your categorical assertion
'There is no evidence any conservative treatment has prevented any surgery' and hundreds meaning the same

is at least a so much convincing argument to believe what follows in those posts:

‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’]

or not?

Just only the absence of any reply, is ethic for you?

Pooka1
03-10-2013, 10:43 PM
‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’

They are not idiots. If the evidence case for over-treatment and failure is explained to them, virtually everyone would understand it.

I do think many of them are ignorant and desperate.

I have said at least a few times in this thread that I do not think people who try conservative treatments (bracing and PT) are crazy. But it is only ethical if they know what the evidence is going in. I have gotten the feeling that some parents seem to be operating under the assumption that there is good evidence for bracing. They are reasoning from bracing being the standard of care and that a surgeon is prescribing it. But this is very uncanny and unusual because bracing is clearly experimental. So they are not lying to their children but they are mistaken and the child does not get an accurate picture and so can't make an informed decision about whether to wear the brace or not. That's why I wondered how they will ever get compliance in BrAIST when the braced kids know the surgeons are okay with randomizing half of them to a no brace group based on their clinical experience and reading the literature.

Alternative treatments (modified hand-held jigsaws, vibrating chairs, rain drops, little massagers with little feet that go up-and-down, up-and-down, chanting, etc.) are generally dreamed up by lay people and so are not worth discussing as a general rule.

rohrer01
03-11-2013, 04:31 AM
Just only the absence of any reply, is ethic for you?

This whole thread was dedicated to picking on one person, Sharon. Is the absence of a reply ethical to you? You say you defined OWMC, but you never did. You never said what "alternative" means outside the "OWMC". For those of us that do understand logic, your vague answers and abrupt change of topic or dismissing a person when you don't feel like giving a logical answer aren't enough. Like I said in the beginning, there is a NONSURGICAL section on this forum where people may discuss any treatment options that they wish. I've been here on the forum long enough to see how different personalities run and how people think. You, Flerc, are showing a not so nice side of yourself by your personal digs and put downs. In fact, the title of this thread is aggressive and accusatory. Sharon's only request when she's not convinced about a treatment is that who ever promotes a treatment should back that up with evidence. I don't see her arguing about people's personal experiences when something seems to work for them. You haven't offered any personal experience about ANY treatment. She is one of the few that especially try to keep the Research section clean. I don't think she should be slammed for that. So unless you have a personal experience of some "alternative" (whatever that is) treatment working, then you don't have the right to complain about being asked for evidence that it works. Everything that you have talked about is hypothetical. There are some things that can not be proven. But for the tangible things like treatment protocols, they can be proven. You can theorize until the cows come home, but it doesn't do a hoot of good unless you can prove that it works. I think this thread should be closed. It's full of nonsense and redundant rehashing of old topics.

Sorry, that's just how I feel.

flerc
03-11-2013, 07:46 AM
They are not idiots. If the evidence case for over-treatment and failure is explained to them, virtually everyone would understand it.

No idiots? Not something meaning the same? Good!.. I may accept it by now.


I do think many of them are ignorant and desperate.
I have said at least a few times in this thread that I do not think people who try conservative treatments (bracing and PT) are crazy.


Is really very far from what you said in those posts about all of them.. you were asserting it in absolutely categoric way.
Do you have a minimal idea about the effect that may (sure) provokes it in someone having hope in those to treatments to read what you said so many times here, the greatest scoliosis forum of the world? In someone 'new in scoliosis' is really very probable the lost of that hope, mainly because your argument is devasting 'There is no evidence any conservative treatment has prevented any surgery'.
Saying it in the way you say it, in the name of science and so on, is sure at least very difficult those new people in this, (mainly for those without a backroun in science) to want to know about same evidence, try to find it, to know what must to be know about scoliosis in order to improve it, what exactly those methods does.. They really may feel despertes ignorants doing it. And is not good to cut the hope to anyone.
Is not right, at least you really know there is not such hope, you have the absolut and definitive evidence about it. And of course in that case you should to show to them.
Is not right to do it, no matter what your fans here may says.
But you are going (since long time ago) for more! You also want to ELIMINATE THE POSSIBILIYT OF AVOIDING SURGERY using braces to.. how many people around the world?
You are decided to erase it from the face of the earth before something definitely better will be available for all these people. I’m saying they may be improved (and I justify what I say) in order to increase the effectiveness. But you don’t want to deabte about it. You know it would not be convincing for noone to be defeated.. certainly I don’t understand your fans.. or yes I do?

Pooka1
03-11-2013, 10:00 AM
Okay I think I see the problem.

You seem to think that saying...

1.) "There is no good evidence that bracing has saved a single person from fusion."

is the same as saying...

2.) "There is good evidence bracing can never work."

Those statements are entirely different. Only the first is true (as proven just by the existence of the BrAIST study irrespective of any results they may glean when they publish their findings). The second is false and will likely always be false. I actually think there may well may be a (very) small, undefinable group of AIS people who might avoid fusion for life from bracing (or PT). But if researchers can never show that then it is rational to remain skeptical and kids should be informed so that can decide if they want to take a chance or not. It is not crazy for a child to decide to try bracing (or PT) if they are informed.

It is NOT rational to try alternative treatments dreamed up by lay people such as you have talked about for years in my opinion.

Does that help?

tkare
03-11-2013, 10:39 AM
Do you know if results from the BrAIST study have been posted or when thy are expected to? I am curious what the results of the study were.

Pooka1
03-11-2013, 11:30 AM
Do you know if results from the BrAIST study have been posted or when thy are expected to? I am curious what the results of the study were.

Oh sorry that was worded poorly.

I meant the very existence of the BrAIST study proves that the jury is out and that there is no good evidence bracing works to avoid fusion NOW. The study hopefully with shed light on whether or not bracing is effective at avoiding fusion at least until the point of skeletal maturity and in which patients. The lesson NOW from BrAIST is that the study was deemed ethical and it involves randomizing kids to a no-brace control group. And that surgeons at 26 medical institutions agree it is ethical to have half the kids not braced. That is a statement about the state of evidence for bracing as it exists NOW.

I think the study is still on-going but is close to wrapping up as far as I know. I don't know if they are still recruiting patients. You can email Lori Dolan at U of Iowa for further details.

Pooka1
03-11-2013, 12:51 PM
That's right. Some patients had certain pre-formed notions based on I don't know what about which group they wanted to be in. The study accommodated them.

I think it is now considered partially randomized or something like that. There was a Dolan publication I think about how the non-random groups did not differ significantly from one another so that may mean they can crunch the data as if it was random. Not sure. If there was a difference in the groups due to patient self-selection then that would limit the impact of the study greatly in my opinion. I think that should be studied about how lay people need more training on how research is done and the limits of research.

But none of that changes the bottom line that surgeons at 26 institutions agree it is ethical to randomize kids to a no-brace control group. These surgeons have hundreds and hundreds and maybe over 1,000 collective clinical years in on top of a knowledge of the bracing literature. And they think non-bracing in this study is ethical. That's the main result at this point.

flerc
03-11-2013, 03:15 PM
Okay I think I see the problem.

You seem to think that saying...

1.) "There is no good evidence that bracing has saved a single person from fusion."

is the same as saying...

2.) "There is good evidence bracing can never work."

Those statements are entirely different. Only the first is true (as proven just by the existence of the BrAIST study irrespective of any results they may glean when they publish their findings). The second is false and will likely always be false. I actually think there may well may be a (very) small, undefinable group of AIS people who might avoid fusion for life from bracing (or PT). But if researchers can never show that then it is rational to remain skeptical and kids should be informed so that can decide if they want to take a chance or not. It is not crazy for a child to decide to try bracing (or PT) if they are informed.

It is NOT rational to try alternative treatments dreamed up by lay people such as you have talked about for years in my opinion.

Does that help?

Does help to what?
If you are asking if this empty ‘reply’ about what I said you, may help me to realize you never will recognize nothing and will never stop doing what you do here , in fact it was not necessary.. certainly I not opened this thread believing it could happen some day.
But as I said, my interest to continue in this thread is to talk about braces.. how may be improved.

Hdugger, nice to see you here again!

flerc
03-11-2013, 04:19 PM
I'm becoming more and more convinced that it's all in the protocol. As you suggest, protocol should include shooting bear in head and not shooting yourself in the head :)

Oddly, I am theoretically opposed to bracing. It just seems to me like weakening the muscles *can't* help. But, my theoretical disposition aside, it seems like it does work if the protocol is followed.

If I expected someone here may understand what I was saying (certainly since years ago) was you! And I was not wrong. I’m busy now but I want to continue talking about it..

Pooka1
03-11-2013, 07:49 PM
Fer,

Please explain how these EXACT QUOTES from the article posted by your buddy differ from what I have been saying... are you going to get mad at them also? Really?

emphasis added


The effectiveness of bracing, however, has not been sufficiently established due to a lack of randomized controlled trials (RCT) [15, 24].


All Medical Ethics Committees approved the randomization process. Furthermore, the Medical Ethics Committees approved that the control group would not be offered brace treatment, [...]


This brace is a regular treatment, and is preferred amongst most of the orthopaedic surgeons, and apparently also by patients and parents, even though evidence is not convincingly established.


In our recently published case–control study on the effectiveness of screening for scoliosis, we did not find evidence that screening leads to a reduction in the need for surgery, which is the ultimate goal of screening [4]. One of the reasons why we did not find a beneficial effect of screening could be that brace treatment is not effective (enough) in (some of) these earlier detected patients. These results justified a RCT on bracing even more.

Here's some speculation as to why lay people have an inaccurate view of the evidence for bracing...


Internet is an important information source for people who want to learn more about their disease or condition. Supposing eligible patients would consult the Internet, before they visit an orthopaedic surgeon, they would now mostly find that bracing is a (effective) strategy to prevent them from worsening. Perhaps, an Internet site with balanced information on the trial could have resulted in a higher participation rate, although the value of audio-visual interventions for people considering participating in clinical trials is unclear [21].


This has probably much to do with the fact that bracing is the regular treatment and once patients have progressive curvatures, they want to act and try their best to stop progression, even if evidence of effectiveness is not convincing.

flerc
03-11-2013, 08:58 PM
Science is good at gathering data. What it doesn't always do so well is make sense of it. If you ask a stupid question, or if you don't really think about what the results of your study might mean, all the data in the world won't make you any smarter. Your data could be spot on and your analysis could still be 100% wrong, and you'll be running at 80 MPH in the wrong direction. OTOH, you can make good sense of what you see in front of you without any formal scientific tools whatsoever.

I've read alot of studies and still the single most convincing piece of information I've picked up in my years of thinking about scoliosis is the "series" of patients over at the scoliosis support forum who all went into surgery with some degree of kyphosis (like my son) and all came out with neck problems. I don't need a paper to tell me there's something going on there - I can see if for myself. OTOH, I've read several papers that were worse then useless - stupid questions, stupid design, stupid analysis.

Science is intelligent careful observation - nothing more, nothing less. I'd take Linda's word on what she'd seen actually working with patients day in and day out over 99% of the studies I've seen.

Hdugger, you really understand what really science is and what is not. Without a carefull observation, what kind of analysis may be done in order to arrive to the right conclusions? And of course right conclusions is what we need in order to solve problems.
Common sense and logic never should to be abandoned!
As you say, you not need a paper to tell you what is obvious!

And talking about braces, what may be more obvious than the necessary conditions for using it? I cannot understand how not may obvious for everyone. I talked so much about it when I was evaluating the EDF gypsum brace.. triggering many complaints here. Did you read what is said here
http://europepmc.org/articles/PMC3086537/reload=0;jsessionid=BymLKZ91Sf7fxWA0MwTD.0

The majority of studies on bracing acknowledge that compliance with brace wear is a major problem. A study on part-time bracing for AIS reported that although the average correction with part-time brace wear was less than that with full-time, compliance was better compared with studies involving full-time bracing (5). Perhaps the improved results of derotational casting compared with bracing, is because the cast cannot be removed so the corrective forces are applied 24 hours per day. If a brace was socially and cosmetically accepted so the patient would were it 24 hours per day, bracing may be a solution for the nonfusion treatment of AIS.

flerc
03-11-2013, 09:08 PM
Fer,

Please explain how these EXACT QUOTES from the article posted by your buddy differ from what I have been saying... are you going to get mad at them also? Really?

emphasis added


Here's some speculation as to why lay people have an inaccurate view of the evidence for bracing...

Sharon what happens? Why so angry? And you say I'm getting mad? The last time you said me that, seems to not have a good outcome, no???
I'm not sure what are you trying to say.. Is because something about my
buddy? Are you jelous? Haa!!
Anyway try to understand what she said about science.. never is late..

Pooka1
03-11-2013, 09:13 PM
buddy? Are you jealous? Haa!!

No I don't want to horn in on your buddy's and your "unique" approach to what science is. You two are two peas in a pod!

flerc
03-11-2013, 09:23 PM
If there are not many other peas here is for your great work! Continue with it..sure you are proud.
And certainly ask her for a definition about ethics, she is very clear.. maybe someday you think in this


No idiots? Not something meaning the same? Good!.. I may accept it by now.

Originally Posted by Pooka1
I do think many of them are ignorant and desperate.
I have said at least a few times in this thread that I do not think people who try conservative treatments (bracing and PT) are crazy.

Is really very far from what you said in those posts about all of them.. you were asserting it in absolutely categoric way.
Do you have a minimal idea about the effect that may (sure) provokes it in someone having hope in those to treatments to read what you said so many times here, the greatest scoliosis forum of the world? In someone 'new in scoliosis' is really very probable the lost of that hope, mainly because your argument is devasting 'There is no evidence any conservative treatment has prevented any surgery'.
Saying it in the way you say it, in the name of science and so on, is sure at least very difficult those new people in this, (mainly for those without a backroun in science) to want to know about same evidence, try to find it, to know what must to be know about scoliosis in order to improve it, what exactly those methods does.. They really may feel despertes ignorants doing it. And is not good to cut the hope to anyone.
Is not right, at least you really know there is not such hope, you have the absolut and definitive evidence about it. And of course in that case you should to show to them.
Is not right to do it, no matter what your fans here may says.
But you are going (since long time ago) for more! You also want to ELIMINATE THE POSSIBILIYT OF AVOIDING SURGERY using braces to.. how many people around the world?
You are decided to erase it from the face of the earth before something definitely better will be available for all these people. I’m saying they may be improved (and I justify what I say) in order to increase the effectiveness. But you don’t want to deabte about it. You know it would not be convincing for noone to be defeated.. certainly I don’t understand your fans.. or yes I do?

And do what you should.

Pooka1
03-11-2013, 09:26 PM
Fer,

I have no idea what you are talking about. I have tried my best to answer your questions. i don't know what else to say.

flerc
03-11-2013, 09:33 PM
Do you expect I may believe it?..tell me what part do you not understand? You not replied nothing

flerc
03-11-2013, 09:42 PM
Okay I think I see the problem.

You seem to think that saying...

1.) "There is no good evidence that bracing has saved a single person from fusion."

is the same as saying...

2.) "There is good evidence bracing can never work."

Those statements are entirely different. Only the first is true (as proven just by the existence of the BrAIST study irrespective of any results they may glean when they publish their findings). The second is false and will likely always be false. I actually think there may well may be a (very) small, undefinable group of AIS people who might avoid fusion for life from bracing (or PT). But if researchers can never show that then it is rational to remain skeptical and kids should be informed so that can decide if they want to take a chance or not. It is not crazy for a child to decide to try bracing (or PT) if they are informed.

It is NOT rational to try alternative treatments dreamed up by lay people such as you have talked about for years in my opinion.

Does that help?

What have to do with what you ever say 'There is no evidence any conservative treatment has prevented any surgery'.

Pooka1
03-11-2013, 09:44 PM
Do you expect I may believe it?..tell me what part do you not understand? You not replied nothing

I have never accused you of being dishonest. But obviously you think I am being dishonest.

There is nothing more to say.

flerc
03-11-2013, 09:49 PM
If you have some reason for accusing me about something as of course I was accusing you when I opened this thread (you don't realized it?) do it. What a simple way to respond to an accusation!

flerc
03-11-2013, 10:52 PM
And also what may be good for one may not be much good for other. I don’t believe at all in an uniform solution for everyone belonging to the same group of the standard classification (age, degrees..).. it should to be customized, but of course more knowledge would be needed.

flerc
03-12-2013, 09:43 AM
And I was not refering only to the OWMC, who ever works in the same way. At least in my country and many others, if you go to an Hospital they say you ONLY must to see a surgeon, who in turn only offer brace or surgery.
But as said once, if you visit an alternative practitioner, he will only offer to you the method he practice..except he know more than one.. but anyway , in how many methods may he be an expert? Customized solution there not exists by now..

flerc
03-12-2013, 12:28 PM
If you have some reason for accusing me about something as of course I was accusing you when I opened this thread (you don't realized it?) do it. What a simple way to respond to an accusation!

to do something inmoral here. I was now clear enough?

flerc
03-12-2013, 02:57 PM
Hdugger, what a great news!.. but in fact I'm really envious ..Ha!
The father of my grandfather borned in the north of Italy, I have de date when he come to Argentina with his wife, all the certificates of his grandson and son.. but I cannot get his birth certificate

Congratulations!

flerc
03-12-2013, 04:25 PM
Oddly, I am theoretically opposed to bracing. It just seems to me like weakening the muscles *can't* help. But, my theoretical disposition aside, it seems like it does work if the protocol is followed

I’m not sure..
One renowned ‘Muscular Relaxing Oriented’ practitioner said me is not a real problem. Of course if he would have been a Muscular Strengthening Oriented practitioner would have said me something very different.
I remember he said me the problem was propioception.. I don’t know why he said it.
I believe the problem may arise after removing the brace, not while is used. But what if something like swimming is practiced for hours after was definitely removed? Anyway, good exercise may be done without removing it.
Certainly, why not swimming during brace? Of course I’m referring to remove it for swimming and immediately put it again.. I’m far to propose to smother kids or teens.
Brace should not to be removed, but why not being lay down? The gravity force could not pull down the spine.

flerc
03-13-2013, 11:13 PM
Here's a good review of long-term surgical outcome:

http://www.orthopaedicsone.com/display/Main/Long-Term+Outcomes+Following+Fusion+for+Scoliosis+Defor mity

Interestingly, while the Cobb angle remains stable, other curves increase (and please, don't ask me which ones - I couldn't quite make sense of it). I *think* there are changes in the sagittal plane as well as continued rotation.

On a completely unrelated topic: Flerc, the little town of Nicosia (in Sicily) found my grandfather's birth certificate. Dual citizenship, here I come :)

Really important what this article says.
May be what you say.. every reasonable idea here should be gathered and analyzed. Thinking all together we could arrive to good conclusions and who knows what could happen..
Who may be sure for example if would be impossible to arrive to the design of the best possible brace?

Of course would be needed more people not seeing as an absurd to think in braces or anything not belonging to the OWMC before this community show a definite evidence saying that works to avoid surgeries.
But of course it has not any sense we talk about this.. for us, is an unalterable fact. That is, facts that cannot be changed for the problem solver.. something essential to know in Problem Solving!

As a great man said once: “God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”..

And of course in scoliosis as in every problem, it would be essential to know the inalterable relevant facts in order to get a solution. They depends on the kind of solution you are thinking. If you are thinking in the discovery of something altering the genes of new generations, so only may arises curves in the sagital plane, surely same inalterable facts as the heuter-volkmann law, some physics concepts about the gravity force, the decomposition in other planes, redirection forces behavior.. probably should not be necessary to be taken into account, but yes if you are thinking in something as braces. And braces seems to be the outcome of a rational analysis taken into account at least some of those facts.

Certainly a Data Base Knowledge containing all the relevant facts in order to solve the scoliosis problem is needed for everyone trying to solve it. Then according the kind of solution taken in mind (surgical, non surgical, Exercise oriented, Device oriented.. ) or a mix of all, would be possible to select the relevant facts seeming to have to take into account and get (through reasonable reasoning) conclusions, which in turn may be taken as new relevant ‘facts’, being useful to arrive to new conclusions which in turn.. the way in which the Mother of all Sciences works! And what may be more rational than Maths? And what may be more incredible than the achievements emerged from her daughters.. like Internet? Some goals seeming impossible, where achieved by people connected and trying to solve all together the same problem.. but of course it has not any sense to say something like this here.. I wish would be different,, but I should remember what the great St. Francis of Assisi said.