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burdle
06-23-2017, 07:50 AM
what has happened to two threads - on I started and the other with a title of Dr Lonner.

Bothe were current yesterday- don't tell me that they have been closed? We should still be able to see them??

burdle
06-25-2017, 06:59 AM
I AM VERY ANGRY. I started a thread about VBT - As with all threads it got heated and veered on and off topic. However there were posts to me individually from KayinIowa and Pooka1 which were about me and my difficulties. This is a SUPPORT GROUP. Why delete the thread?. We are not children and you live US and I live in UK and both countries are democratic and believe in free speech. If you must - just delete individual posts!! What is the point of this forum if it does not encourage and support debate. Times are changing- this forums woeful lack of information about VBT is evident and for some reason the mods are determined to eradicate posts about it. Well time are changing and if you continue to do this then there will be no point to the forum at all. Just look at the activity on Facebook and compare with the amount of posts here. The forum is already in decline and I think it is a great pity because actually there are voices on here that are well worth hearing (Ed, Pooka1 to name a couple) , have wonderful things to help fellow patients. Forums are much easier to follow than Facebook and you do scoliosis sufferers a disservice by denying them access to proper discussion. The point of your forum is for SCOLIOSIS sufferers because we are failed by medicine!. I am so angry - you call yourself NATIONAL SCOLIOSIS FORUM yet to go about treating adults like children and behaving as if this was some private little group where only people who agree with you can 'play'

VBT is happening - in US - In turkey, In Germany and maybe soon back again in UK. So however heated the discussion - and to be honest it was really only flerc with his mistranslated posts that was getting annoying- no-one should remove it. At best you could have deleted individual posts or closed the thread but to remove it is disgraceful - shame on you!

Pooka1
06-25-2017, 10:02 AM
and to be honest it was really only flerc with his mistranslated posts that was getting annoying-

The problem did not stem from any mistranslation in my opinion. That was not the problem. Also, there were other players who were not contributing and only disrupting in this sandbox besides flerc.

This forum should not be a place where irrational conspiracy theorists can post.

burdle
06-25-2017, 10:32 AM
The problem did not stem from any mistranslation in my opinion. That was not the problem. Also, there were other players who were not contributing and only disrupting in this sandbox besides flerc.

This forum should not be a place where irrational conspiracy theorists can post.

But then remove the posts! That thread had your kind comment to me in it- you will never know what that meant to me at the time and now I don't have it to help me . I live in a world of pain where I am frightened that as time goes on I won't be able to understand what is best for me because mentally I will be fragile.

It's like part of me my past has been deleted - as if I don't matter and what I think doesn't count. Richard and flerc were irrational - they can only be countered by rationality but it has to be evident- out there

burdle
06-25-2017, 12:38 PM
And no reply from the mods after 48 hours? So all our efforts and not a modicum of courtesy from the mods who just deleted everything and said nothing?????

I am astounded - come on guys ???

titaniumed
06-25-2017, 01:17 PM
But then remove the posts!

Seems like a good idea, but the problem is that the reason for removal needs to be stated, otherwise the post becomes extremely jumbled and hard to follow should someone read it at a later date. This takes full time moderators to accomplish, and Linda is trying to retire from UCSF. NSF barely hangs in there financially through Joe's compassion, and Linda does not get paid for moderating.

The defamation of SRS and the medical community needed to be deleted. I completely agree with the call, she gave a warning, I personally would have deleted right away. For those surgical patients that had their lives saved, this becomes highly offensive and should never ever happen AGAIN. I will start another thread in which Dr Lenke talks about what surgical patients will need to do as far as support with our ever changing health care system. When insurance companies DENY our surgeries in the future, everyone will have a complete understanding of what I am talking about. Things are getting extremely serious with our healthcare system right now. (smug face) I will be expecting to make premium payments that will surpass two house payments in the future. I am in the most expensive group but I never said I was a cheap date.

Translated language using online translators is still lacking accuracy, any 5th grader will agree. Leave it to software programmers to release inferior product when the rest of the world is forced to offer a guarantee. There are words that have multiple meanings, and the grammer is off. Its See Spot run, not See run Spot. Sigh.....The translators are only good for a few words, not shilling or hawking surgical procedures that have the potential to affect people should something go wrong. The accusations of insanity is another subject being incredibly uncouth. The word uncouth translates with Google translator as being "rough" and English speakers all know this is the wrong translation. Need I say more? Should I go on a Chinese scoliosis forum, insist that posters have debilitating neuro disorders because they don't understand, and insist that the translation is correct? How would this action be defined?

Burdle, I am so sorry that you are in pain. PT is a good thing, and hot water soaks work quite well....I will always be careful with medications due to the unknowns even with approval. This does come after taking multiple blacklisted drugs, which of course has me overly cautious. We have our tools in the scoliosis arena, I think of them as tools, and whatever works for each of us is our own choice and decision.

This is a good forum because of its members. The SSO British forum was also an excellent forum, very supportive with Tonibunny, Titch, Mark, and the others all acting together as group mod's. It took a strong communicative effort on their part, and it worked well in the support and technical arena. I hate to say this but Facebook is a powerful monster. They are a monopoly, and will control all media to some extent. I don't use FB, since I don't like their format, I am sure one of the 19,000 employees is reading this, perhaps they will make that change to a forum style to appease people like you and me. For now, we are here together in our scoliosis struggle just trying to cope. All we can try to do is make the best of things on a positive note.

Ed

KathyInIowa
06-25-2017, 05:53 PM
I understand what Ed is saying, and agree.

Burdle - I also understand where you are coming from. When someone says something to me that really hits me in the heart and makes me feel like that person ACTUALLY cares about me and my well being, I savor that comment and I will read and re-read it when I'm feeling low. It's a true testiment that "just a few words can brighten someone's day." Even if it's someone you don't even know personally. For me, really no one close to me really "gets it" when it comes to my scoliosis. (Well, my husband does because he had to live with me!) To them, it's a "serious back issue that I conquered." But, really it's more than that. It carries a certain amount of "mental anguish" for me that no one understands what I've been through, even before surgery. I don't make a big deal of it because I feel like it doesn't serve a point to talk about something no one understands anyway. But, I do feel a certain amount of "friendship and understanding" with people on this forum.

I hope tomorrow is a "good Monday" for you, Burdle.

Kathy

Pooka1
06-25-2017, 07:33 PM
Hey Burdle, here is the guy I mentioned in one of those deleted threads... he is the spine surgeon who started doing basic research into pain.


Dr. David Hanscom, M.D., is an orthopedic spine surgeon at Seattle Neuroscience Specialists with Swedish Medical Center in Seattle, WA. He specializes in complex spine problems in all areas of the spine, and has expertise in adult and pediatric spinal deformities, such as scoliosis and kyphosis. Many of his patients have had multiple prior spine surgeries. He has successfully treated hundreds of patients for chronic pain.

http://brainworldmagazine.com/spine-surgeon-david-hanscom-on-his-new-book-chronic-pain-docc/

----------------------------


Having had had two spinal surgeries, ending up with kidney failure, ulcers and post-operative infection, Hanscom has first-hand knowledge of chronic pain. This has left him with extreme empathy for patients who come to him. Since medical school he’s educated himself on mind/body syndromes. Discovering he had a lot of anger issues he says, “I wrote a section in my book called the disguises of anger and, looking backward, I could see that I had every disguise going. When you come from a difficult childhood like mine, anger and anxiety are your baseline; that’s your norm.” He describes three causes of pain: structural, soft tissue, and fired up already established, neurological brain pathways. Pain pathways are very, very specific and he advocates a program he’s developed that he calls DOCC (Defined, Organized, Comprehensive Care), which takes into account the Mind/Body Syndrome. He went through the Hoffman Process and learned, “You either create bad habits or good habits. Anytime you’re anxious or angry, you’re in an automatic pattern, a reactive pattern. That’s not who you are.” (hosted by Justine Willis Toms)


Topics explored in this dialogue include:

How chronic pain disables us
How did the Russian scientist, Dr. Ivan Pavlov, cure himself with buckets of mud
How experiments have shown that a rich social life diminishes pain
Why surgery is not always the definitive solution to pain
Why positive thinking and “mind over matter” are only short-term solutions
How can we calm down the neurological pathways of pain we’ve developed
How is sleep the trump card of lessening chronic pain
Why Hanscom is very conservative about recommending spine fusions
Why degenerative disc disease is often not the cause of chronic pain
What is the Hoffman Process and how did it help him
How the Hyde School process changed his family dynamics

https://newdimensions.org/dealing-with-chronic-pain-with-david-hanscom-m-d/

--------------

I hope this helps you with you Monday tomorrow. Hang in there. :-)

Sharon

burdle
06-26-2017, 07:51 AM
I understand what Ed is saying, and agree.

Burdle - I also understand where you are coming from. When someone says something to me that really hits me in the heart and makes me feel like that person ACTUALLY cares about me and my well being, I savor that comment and I will read and re-read it when I'm feeling low. It's a true testiment that "just a few words can brighten someone's day." Even if it's someone you don't even know personally. For me, really no one close to me really "gets it" when it comes to my scoliosis. (Well, my husband does because he had to live with me!) To them, it's a "serious back issue that I conquered." But, really it's more than that. It carries a certain amount of "mental anguish" for me that no one understands what I've been through, even before surgery. I don't make a big deal of it because I feel like it doesn't serve a point to talk about something no one understands anyway. But, I do feel a certain amount of "friendship and understanding" with people on this forum.

I hope tomorrow is a "good Monday" for you, Burdle.

Kathy

Thank you- you have 'got-it'

burdle
06-26-2017, 08:05 AM
Seems like a good idea, but the problem is that the reason for removal needs to be stated, otherwise the post becomes extremely jumbled and hard to follow should someone read it at a later date. This takes full time moderators to accomplish, and Linda is trying to retire from UCSF. NSF barely hangs in there financially through Joe's compassion, and Linda does not get paid for moderating.

The defamation of SRS and the medical community needed to be deleted. I completely agree with the call, she gave a warning, I personally would have deleted right away. For those surgical patients that had their lives saved, this becomes highly offensive and should never ever happen AGAIN. I will start another thread in which Dr Lenke talks about what surgical patients will need to do as far as support with our ever changing health care system. When insurance companies DENY our surgeries in the future, everyone will have a complete understanding of what I am talking about. Things are getting extremely serious with our healthcare system right now. (smug face) I will be expecting to make premium payments that will surpass two house payments in the future. I am in the most expensive group but I never said I was a cheap date.

Translated language using online translators is still lacking accuracy, any 5th grader will agree. Leave it to software programmers to release inferior product when the rest of the world is forced to offer a guarantee. There are words that have multiple meanings, and the grammer is off. Its See Spot run, not See run Spot. Sigh.....The translators are only good for a few words, not shilling or hawking surgical procedures that have the potential to affect people should something go wrong. The accusations of insanity is another subject being incredibly uncouth. The word uncouth translates with Google translator as being "rough" and English speakers all know this is the wrong translation. Need I say more? Should I go on a Chinese scoliosis forum, insist that posters have debilitating neuro disorders because they don't understand, and insist that the translation is correct? How would this action be defined?

Burdle, I am so sorry that you are in pain. PT is a good thing, and hot water soaks work quite well....I will always be careful with medications due to the unknowns even with approval. This does come after taking multiple blacklisted drugs, which of course has me overly cautious. We have our tools in the scoliosis arena, I think of them as tools, and whatever works for each of us is our own choice and decision.

This is a good forum because of its members. The SSO British forum was also an excellent forum, very supportive with Tonibunny, Titch, Mark, and the others all acting together as group mod's. It took a strong communicative effort on their part, and it worked well in the support and technical arena. I hate to say this but Facebook is a powerful monster. They are a monopoly, and will control all media to some extent. I don't use FB, since I don't like their format, I am sure one of the 19,000 employees is reading this, perhaps they will make that change to a forum style to appease people like you and me. For now, we are here together in our scoliosis struggle just trying to cope. All we can try to do is make the best of things on a positive note.

Ed


SSO in UK has stopped- no word why - nothing.

It's all very well but setting up a site such as these comes with a huge responsibility. The SSo left vulnerable people stranded - who knows what anguish it caused. No-ones 'fault' but a huge problem for those in the middle of a support who lost all contact in one fell swoop!

Same here really- I fully understand about people giving up their time etc but still you have to be very careful that when you stand up and call yourself 'NATIONAL' and give yourself a sort of credibility that you make sure you fulfil obligations.

The site must be 'up-to-date'- otherwise it can give a very dangerous message. It can say it is not up to date and it can say that voluntary moderators are having less and less time to maintain it and it can say it is looking for someone to take it over. Communication is everything.

That is why I have emailed now twice ( with no reply) to the site to ask for at least a basic information about VBT and to ask for some of the information like SPINECOR to be updated and also that irritating article which says the majority of people who have scoliosis have no pain to be removed as clearly the majority of people who have a significant scoliosis and go to internet sites for help Do have pain. People who have no pain just get on with living.

I emailed SRS also ( nothing defamatory about doing so) asking why nothing about VBT and got a reply saying they are looking into it. We should not be afraid of challenging SRS , they are a research body for scoliosis. Without patients they would not exist. Therefore patients have a right to the latest accurate information out there. I will not be frightened away from doing this and I don't expect to be given a hard time for doing this. Surgical treatments do and frankly must evolve

Richard and Flerc went too far in their conspiracy conclusions but this is what can happen when you are met with a 'silence'


We have law of slander and libel in UK? do you have the same in US

Pooka1
06-26-2017, 08:17 AM
https://forum.freeadvice.com/libel-slander-defamation-88/can-i-sued-libel-someone-forum-427737.html

My guiding principle in this area is that truth is a perfect defense. You can never be convicted if the statement is true.

burdle
06-26-2017, 08:34 AM
https://forum.freeadvice.com/libel-slander-defamation-88/can-i-sued-libel-someone-forum-427737.html

My guiding principle in this area is that truth is a perfect defense. You can never be convicted if the statement is true.

I absolutely agree- however the law exists to protect people from the unscrupulous claims people can make- the onus should not be on the innocent to defend themselves?

Pooka1
06-26-2017, 09:13 AM
Well I would hope someone who brings a loser suit should have to pay all defense costs.

burdle
06-27-2017, 05:16 AM
https://forum.freeadvice.com/libel-slander-defamation-88/can-i-sued-libel-someone-forum-427737.html

My guiding principle in this area is that truth is a perfect defense. You can never be convicted if the statement is true.

To quote Keats - what is 'truth'?

Pooka1
06-27-2017, 08:05 AM
To quote Keats - what is 'truth'?

Truth is provisional and is what has the most evidence at that moment. For some things, we have so much evidence that it can be considered an actual truth.

burdle
06-27-2017, 01:48 PM
Truth is provisional and is what has the most evidence at that moment. For some things, we have so much evidence that it can be considered an actual truth.

I am not sure we can equate evidence with truth though. Truth has to be a constant evidence doesn't

Pooka1
06-27-2017, 07:22 PM
I am not sure we can equate evidence with truth though. Truth has to be a constant evidence doesn't

I am not equating them. Truth is a function of evidence (amount, quality, coherence with other evidence, etc.). There is overwhelming evidence that water is two atoms of hydrogen and one atom oxygen. Thus it is true that the chemical formula is H20. That is constant.

There is overwhelming evidence that the earth is older than a few thousands years. Thus it is true that the earth is older than a few thousand years. That is constant.

There is a bucket of evidence that surgeons do not tend to offer Spinecor because it doesn't seem to work. Thus it is true that most surgeons don't offer Spinecor. That may change but I doubt it.

Peter Newton (top ped spine surgeon) SAID his group tried to make Spinecor work but failed. Thus Peter Newton dos not offer Spinecor to his patients. That is constant.

People can and do take issue with all these things and claim they aren't true. But the evidence suggests they are true.

burdle
06-28-2017, 05:56 AM
I am not equating them. Truth is a function of evidence (amount, quality, coherence with other evidence, etc.). There is overwhelming evidence that water is two atoms of hydrogen and one atom oxygen. Thus it is true that the chemical formula is H20. That is constant.

There is overwhelming evidence that the earth is older than a few thousands years. Thus it is true that the earth is older than a few thousand years. That is constant.

There is a bucket of evidence that surgeons do not tend to offer Spinecor because it doesn't seem to work. Thus it is true that most surgeons don't offer Spinecor. That may change but I doubt it.

Peter Newton (top ped spine surgeon) SAID his group tried to make Spinecor work but failed. Thus Peter Newton dos not offer Spinecor to his patients. That is constant.

People can and do take issue with all these things and claim they aren't true. But the evidence suggests they are true.

All 'true' but for example Spinecor Doctors originally claimed that the brace would 'work'- that wasn't true but it wasn't a falsehood either - at the time the evidence indicated this. Later with more evidence we know that it doesn't work as first thought. It is true that most surgeons do not offer it but it is neither true nor false that it doesn't work because at some point I 'worked' for 'some'.

I am not arguing for or against spinecor- jjust enjoying the 'philosophy'

Pooka1
06-28-2017, 08:14 AM
All 'true' but for example Spinecor Doctors originally claimed that the brace would 'work'- that wasn't true but it wasn't a falsehood either - at the time the evidence indicated this. Later with more evidence we know that it doesn't work as first thought. It is true that most surgeons do not offer it but it is neither true nor false that it doesn't work because at some point I 'worked' for 'some'.

I am not arguing for or against spinecor- jjust enjoying the 'philosophy'

The Spinecor developers HOPED it would work. They can't claim it works until they gather evidence. They did publish papers putatively showing it worked but other surgeons did not believe them. I know this because a surgeon told me these papers were widely disbelieved among surgeons. I don't think they were saying it was outright fraud but rather poor design and the general problem of doing science well. Surgeons are MDs and that is not a research degree. There are joint MD/PhD programs for a reason. I am not saying MDs can't come up to speed. Many do come up to speed. I am saying some don't and still publish.

I don't believe Spinecor ever worked and was shown to work in a correctly designed experiment.

burdle
06-28-2017, 09:54 AM
The Spinecor developers HOPED it would work. They can't claim it works until they gather evidence. They did publish papers putatively showing it worked but other surgeons did not believe them. I know this because a surgeon told me these papers were widely disbelieved among surgeons. I don't think they were saying it was outright fraud but rather poor design and the general problem of doing science well. Surgeons are MDs and that is not a research degree. There are joint MD/PhD programs for a reason. I am not saying MDs can't come up to speed. Many do come up to speed. I am saying some don't and still publish.

I don't believe Spinecor ever worked and was shown to work in a correctly designed experiment.

Point taken. I think I would then use the word 'reality' rather than 'truth'

Pooka1
06-28-2017, 08:03 PM
Point taken. I think I would then use the word 'reality' rather than 'truth'

I'll agree with that.