Another One Bites The Dust

[Pooka1]

Expression of something important that helps us get through our daily lives with this condition - really shouldn't be forbidden.

No it shouldn't but you can't mix it or that type of magical thinking in with discussions of a serious medical condition. That is not helpful and in fact is a liability because that type of thinking is typified by elevating unfounded claims to "facts."

You do this continually and it is misleading in the extreme. You need to consider the desperate people who come on here looking for medical facts who DON'T want to be mislead.

[mariaf]

I find it rather sad that you feel the need to remove any posts discussing religion when the President of NSF (Joseph O'Brien) references the following interests in his public profile: http://www.scoliosis.org/forum/member.php?u=114

Interests
God, Family, golf, skiing, kayaking,billiards

Who's tired of the "debate" - you and Sharon? Spirituality is an important part in the lives of many, including the President of NSF. Expression of something important that helps us get through our daily lives with this condition - really shouldn't be forbidden.

I really don't want to get into this debate, except to say that I honestly don't believe that just because the president of NSF references God/religion in his public profile, that should set the tone for the forum and its members. Those are HIS personal beliefs and should not have ANY effect on the forum.

[mamamax]

No it shouldn't but you can't mix it or that type of magical thinking in with discussions of a serious medical condition. That is not helpful and in fact is a liability because that type of thinking is typified by elevating unfounded claims to "facts."

You do this continually and it is misleading in the extreme. You need to consider the desperate people who come on here looking for medical facts who DON'T want to be mislead.

To accuse me of continually being misleading in the extreme, and to infer that I have no consideration for others like myself who have scoliosis is ...

False Accusation to the nth degree.

[hdugger]

The internet is a *huge* place - you really don't have to beat your head against a wall.

The NSF forums are useful for what they are (a place to get support and information about surgical treatment of scoliosis). If you want to discuss other treatments, it's so easy and cheap to open up a little bulletin board of your own.

The most commonly-used software is PHPBB, and you can host a forum for around $5 or $6 a month. There's information about it here - http://www.phpbb.com/hosting/index.php. You can make it as open or closed as you like. I'd personally recommend making it invitation only for 6 months or so, so that you can create you own culture and guidelines, and then open it up for general discussion.

You can continue to use this forum in whatever way is useful, but you'll also have a place to go if you want to have different kinds of discussions in a different kind of environment. Again, the internet is huge - it can support all kinds of different places.

I don't have the cycles to run something - my son is on the edge of taking over his scoliosis treatment himself - but I'd be happy to help set it up and try to deal with technical issues. I used to work for bulletin board software company, so I know my way around.

Anyway, really, there's no reason to *ever* talk about what kinds of discussions are acceptable. The internet is boundlless, and you can always find a spot to talk about whatever you want to talk about in whatever way you want to talk about it.

[dailystrength]

I agree with Mamamax- in fact I was thinking it might be nice to have a "religion thread" where those of us of faith could explore how our feelings and thoughts about scoliosis intersects with it. I guess that will not be an option. For many of us, our faith is inseparable from our life experience, and we have many questions regarding our faith and our condition. If people are not interested, they don't have to read it, is what I would think. I do think it would interest many, from the threads I've seen. Long live free (respectful) speech!

I am sorry to tease about saying people can't say "mean" things. Yes, I was joking. However I do wonder why so much negativity is tolerated. The Forum, to me, should be a place we should be able to share freely and find open-minded people. Hope is what we need, even if it's not scientifically proven. Hope can even affect health; the mind/body connection is amazing. It can give us reason to go on trying. I too, was attacked for "conservatively treating" my curves, and asked to give "facts". The fact is that my SRS Surgeon told me to do so.

And a Forum is not a place to look for medical facts - a forum of patients is an open-ended discussion... I would hope no one comes looking here for medical facts! Web definition of Forum: "a public meeting or assembly for open discussion."

[dailystrength]

The NSF forums are useful for what they are (a place to get support and information about surgical treatment of scoliosis).

Anyway, really, there's no reason to *ever* talk about what kinds of discussions are acceptable. The internet is boundless, and you can always find a spot to talk about whatever you want to talk about in whatever way you want to talk about it.

Well, then why do we have a Non-Surgical Category? I think if those with strong biases toward surgery respected the space for the non-surgical folks, we would all get along peacefully.

The NSF Forum is "the" Forum.... I wish people would use proper etiquette and respect. I have been attacked for merely mentioning methods my doctor prescribed. I have given no false information yet been attacked. We do not have answers, we have questions. I sincerely hope I can continue to experience support and also learn of methods others are trying. This is invaluable to me, and conservative treatment has been ordered by my SRS doctor. It's up to me to find the proper conservative treatment that works best.

[hdugger]

The moderation rules of the forum are very clear in practice (and oft-stated) - post *style* is never moderated (although, clearly post *content* is). So, as long as people are roughly on-topic, the post will stand. If you need a different, less adversarial culture - then you really have to create it yourself in a different forum. You do not have the tools necessary to create it within this forum. That's neither good nor bad - it simply is.

On why there's a non-surgical forum, I really couldn't say. My experience has been that it's relatively safe to discuss non-surgical methods for pain relief, but any other application can get pretty dicey. You may *want* it to be otherwise, but, barring some bolt of lightening from the sky, the odds are 99.9999% that it's going to stay the way it is.

If you like that, fine. If you want something different, I strongly recommend you create it yourself. That doesn't mean that you can't use this forum. You can. But, if you *also* want a place where you can discuss the broad application of non-surgical methods in a non-contentious environment, this is simply not the place.

[LindaRacine]

The only time people seem to get themselves in trouble is when they try to convince others to try "their" therapy. I personally don't understand why some seem to think they'll be validated if others try "their" therapy. By the way, that goes for surgery as well as other therapies. I personally have never felt the need to convince people to have surgery. If someone chooses surgery, that's their decision. I'm neither validated nor even remotely pleased about it. If something is working for you, that's great. Post about your own experiences without making it sound like you're shilling for the therapist, and I suspect you'll get a lot more respect.

[mamamax]

The only time people seem to get themselves in trouble is when they try to convince others to try "their" therapy. I personally don't understand why some seem to think they'll be validated if others try "their" therapy. By the way, that goes for surgery as well as other therapies. I personally have never felt the need to convince people to have surgery. If someone chooses surgery, that's their decision. I'm neither validated nor even remotely pleased about it. If something is working for you, that's great. Post about your own experiences without making it sound like you're shilling for the therapist, and I suspect you'll get a lot more respect.

Isn't the whole point of a non-surgical forum to share methods which may bring relief? Does the last sentence above imply that there is a lack of respect for the non-surgical forum? What exactly defines "shilling"? Is it being happy to have found something that brings relief? If so, why would that standard only be applied to the non-surgical forum?

[Pooka1]

To accuse me of continually being misleading in the extreme, and to infer that I have no consideration for others like myself who have scoliosis is ...

False Accusation to the nth degree.

I would like to apologize to you.

I don't think you are trying to mislead people. I think your magical thinking does help you and that there is research backing that up. I think you are applying that type of thinking to your treatment and then touting it beyond any objective evidence.

You have your evidence which is real to you. I believe people when they say they know there is a god or they know a conservative treatment is effective for anything other than pain. The problem is their knowing that is completely irrelevant and yes misleading to anyone else who thinks for themselves.

In my opinion, on a medical forum, once we acknowledge the evidence for the benefits of wishful thinking (i.e., placebo effect) and the lack of evidence for intercessory prayer, what else is left that is relevant to a serious medical condition? The topic is completely exhausted at that point unless people are here to also proselytize.

[mamamax]

I would like to apologize to you.

I don't think you are trying to mislead people. I think your magical thinking does help you and that there is research backing that up. I think you are applying that type of thinking to your treatment and then touting it beyond any objective evidence.

You have your evidence which is real to you. I believe people when they say they know there is a god or they know a conservative treatment is effective for anything other than pain. The problem is their knowing that is completely irrelevant and yes misleading to anyone else who thinks for themselves.

In my opinion, on a medical forum, once we acknowledge the evidence for the benefits of wishful thinking (i.e., placebo effect) and the lack of evidence for intercessory prayer, what else is left that is relevant to a serious medical condition? The topic is completely exhausted at that point unless people are here to also proselytize.

Thank you Sharon, apology accepted. I want to answer your thoughts here, but since God has been mentioned - the post may disappear. If your post is still here when I get home from work this evening, then I'll comment further.

[Pooka1]

Isn't the whole point of a non-surgical forum to share methods which may bring relief?

Yes pain relief. Conservative methods seem to have a better track record for that than surgical methods for subsurgical curves.

The problem is that the claims go beyond pain relief without any evidence supporting it. In decades and decades. That doesn't mean they won't one day be shown to be effective. I think there is some hope that certain braces help certain kids though I think the trigger angles for bracing might need heavy revision downward. And then we are into the territory where the great bulk of curves wouldn't progress anyway and might even regress on their own so it becomes harder and harder to pull a clean result out.

Clear exploits this reality by claiming people should start their therapy at very small angles. We know separately that most small curves do not become big curves and some regress. So even in the likely event the therapy is doing nothing it will appear to be ~90% effective. But the curves destined to get big will still get big and they can still claim only a ~10% Failure rate. They are sly.

[dailystrength]

Thanks, Hdugger and Linda, for your thoughful replies. I will keep that in mind as I try my therapies, notably, Schroth, soon.
Respectfully, Christina

[dailystrength]

Clear exploits this reality by claiming people should start their therapy at very small angles. We know separately that most small curves do not become big curves and some regress. So even in the likely event the therapy is doing nothing it will appear to be ~90% effective. But the curves destined to get big will still get big and they can still claim only a ~10% Failure rate. They are sly.

On a related note about Clear, I had a consultation with a Clear practitioner a year ago, who told me that scoliosis starts in the neck. I had never heard that. Especially since my larger curve, and the only curve I had as a teen, was in my lumbar spine, I have trouble accepting this-- probably for a good reason. I am under the impression that a pelvic imbalance has more to do with it. And which comes first, the chicken or the egg-- a leg length discrepancey (mine was an inch off at age 14), or the pelvis imbalance? Anyway, just thought I'd throw that out there. If strong opinions ensue, feel free to make a separate thread out of this. Just wondering....

[Pooka1]

On a related note about Clear, I had a consultation with a Clear practitioner a year ago, who told me that scoliosis starts in the neck. I had never heard that. Especially since my larger curve, and the only curve I had as a teen, was in my lumbar spine, I have trouble accepting this-- probably for a good reason. I am under the impression that a pelvic imbalance has more to do with it. And which comes first, the chicken or the egg-- a leg length discrepancey (mine was an inch off at age 14), or the pelvis imbalance? Anyway, just thought I'd throw that out there. If strong opinions ensue, feel free to make a separate thread out of this. Just wondering....

That's an excellent point. I think Clear muddies the waters by purposely confounding chicken/egg issues and just skewing them in their favor based on no evidence whatsoever.

Good thinking.