Originally posted by flerc
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Stop trying to convince that official western medical community is the only option..
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Originally posted by Pooka1 View PostFer,
I hope your daughter is okay.
Originally posted by Pooka1 View PostWhat happened?
What happened that made you so mad?
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?Last edited by flerc; 03-10-2013, 09:10 PM.
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Fer,
What happened?
What happened that made you so mad? I hope your daughter is okay.
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Originally posted by Pooka1 View Post"To be hurt and forgive is saintly but far beyond this is the power to understand and not be hurt..." -- Greatest Holy Leaf
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Originally posted by Pooka1 View PostYou 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?Last edited by flerc; 03-10-2013, 07:20 PM.
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Originally posted by leahdragonfly View PostThis 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.
Originally posted by leahdragonfly View PostHi 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.
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.
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Originally posted by Pooka1 View PostThere 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
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Originally posted by flerc View PostI may agree with it,
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.
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Originally posted by flerc View PostBRACE 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.
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.Last edited by leahdragonfly; 03-10-2013, 12:22 PM.
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Originally posted by Pooka1 View PostThe only thing that matters is evidence. The rest of this might as well be singing.
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.Last edited by flerc; 03-10-2013, 11:26 AM.
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