Stop trying to convince that official western medical community is the only option..

[flerc]

Of course, the only division here is about people trying to solve a health problem (regardless the kind of solution they may think is the best) and people having other interests as they are showing to have.

[Victine]

I would note that, those of us pursuing non-surgical methods have felt uncomfortable and attacked for years now. Openly attacked and sniped at. Everywhere across the forum. When I talk openly about it in two threads, when *you* feel uncomfortable and attacked, for less than a week, suddenly it's the end of the world and simply must be stopped.

I'll tell you what. You get the 20 or so folk medicine threads of the first page of the Research Forum removed. You get Pooka to stop posting unpleasant things to the one thread where Dingo posts. You take all of those discussions about what an idiot he is into private messaging and get it off the forum. You talk to the moderators about deleting threads about how bracing parents are lying to their children, how they're cavelier and uncaring. And then we'll have a talk about whether or not I can stop posting contentious things in these two threads.

Yes. Bravo! Spot on.

[hdugger]

Or, better still, ignore all of my posts and just look at the evidence.

Where are all of the non-surgical patients? *All* of the exercise, and most of the bracing parents have left the forum - many of them to join another, private group.

Either there's something oddly correlated about wanting to pursue something other then surgery and having discussions in private groups. Or something in this forum has made them all leave.

Who's creating the camps again? The ones who feel forced to leave? Or the anti-conservative treatment ones who remain?

[In response to huge misunderstanding, clarifying that this post refers only to stridently anti-non-surgical posters. *NOT* talking about the forum in general]

[flerc]

There is no immoral work being done on this forum.

You are now defending also her work in a direct way! Of course I cannot have any more any doubt.

[hdugger]

It is not the messenger who creates the message. The camps exist, the contentions exist. I'd divide the camps roughly into those who think that calling other parents blind/blind/naked is funny and acceptable behavior, and those who don't. Those who think that calling other parents blind/blind/naked is *not* contentious, but that saying that you find being called blind/blind/naked insulting *is* contentious.

So, the camps are there. The ugly behavior predates my response by about two years.

I am largely, have been largely, silent on this issue. For years. I honestly thought it was the virtuous path. Put people on ignore and just try to focus on the task as hand. Flerc's call of complicity really woke me up. He's right and I was wrong.

I have written to the NSF, this weekend for the first time, to ask for help. I wrote when I realized that I was completely and totally out of tools to resolve a problem which I consider deathly serious. Whether or not it will change anything, I do not know. I am hopeful, but I do not know. But, I am prepared to leave the forum, must leave, if it stays the way it is. I really cannot be party to something which I think is genuinely harming people.

I would note that, those of us pursuing non-surgical methods have felt uncomfortable and attacked for years now. Openly attacked and sniped at. Everywhere across the forum. When I talk openly about it in two threads, when *you* feel uncomfortable and attacked, for less than a week, suddenly it's the end of the world and simply must be stopped.

I'll tell you what. You get the 20 or so folk medicine threads of the first page of the Research Forum removed. You get Pooka to stop posting unpleasant things to the one thread where Dingo posts. You take all of those discussions about what an idiot he is into private messaging and get it off the forum. You talk to the moderators about deleting threads about how bracing parents are lying to their children, how they're cavelier and uncaring. And then we'll have a talk about whether or not I can stop posting contentious things in these two threads.

[In response to huge misunderstanding, clarifying that this post was a specific response to Rohrer *NOT* to the forum in general]

[flerc]

I have absolutely nothing to talk about my daughter with people bad intentioned as you show every time you are.
If you want to talk with me about any other issue, even issues I'm trying to understand as bone remodeling, respond first to the serious accusation I did about you.

[Pooka1]

Of course when I say you Good attack, I’m referring only that you show you are learning to use her arms.. only that. And of course something as logic, respect.. are not needed, certainly exactly all the contrary.

Has your daughter tried any of the conservative treatments mentioned? What were the results?

[flerc]

Of course when I say you Good attack, I’m referring only that you show you are learning to use her arms.. only that. And of course something as logic, respect.. are not needed, certainly exactly all the contrary.

[flerc]

Unless you just like to stir the pot. I'm really disappointed in these kinds of posts that you have been posting. I don't care that you have experience running other online forums. That just gives you more experience on how to push people's buttons and take things off track AND makes you more accountable for continuing contentious conversations. There is no immoral work being done on this forum. There is simply a worldwide base of different personalities and opinions. If you think one member is being a bully, then report the bullying and don't try to divide the whole forum into camps.

Good defense, Rohre01!! That is, good attack to people trying to have a place here. Certainly as your friend suggested in some sense once, you might replace her.
But certainly is early to be thinking in that. You are a perfect equipment! She does her immoral work and you (of course too) defend her for people trying to stop it.. also I believe you have to learn very much yet.. but Congratulations anyway! You are in the path without any doubt!.

[Pooka1]

I agree completely that everyone would be better served if we aren't divided into camps (surgical and non-surgical). I'm not directing this at anyone, but rather asking everyone to listen to what rohrer is saying. I think part of the problem is that often - and perhaps this is human nature to a degree - people make assumptions about others that turn out to be incorrect. I suppose I would be placed in the "surgical" camp because my son had surgery. However, I don't consider myself "pro surgery". In fact, I don't think anyone is "for" or "against" surgery, but rather realize that sometimes it is the only option. As has often been said on this forum, nobody WANTS surgery.

I happen to have a long-standing friendship with the woman who runs the infantile/casting forum. She advocates serial infantile casting as a way to avoid surgery in young children. I think she is spot on with this approach. She will recommend trying anything to avoid surgery. However, in cases where casting is not effective, she has referred parents over to me when their kids hit a certain age if those parents have expressed in interest in fusionless surgery (VBS, tethering).
In turn, I have referred numerous parents over to her who have contacted me regarding scoliosis in a very young child. I do not view her as "anti" surgery and she does not view me as "pro" surgery. We both want to help these kids in any way we can. For some, surgery is the best option. For others, it's not.

Why can't we adopt that mentality here??

Both this post and Rohrer's are spot on. Well put.

[mariaf]

Hdugger,
Why are you trying to divide the forum into "surgical" and "non-surgical" camps? There's room for all kinds of therapies. As far as I can tell, most people that have had surgery have tried at least some non-surgical approaches. So where do those of us that non-surgical approaches have failed fall within your categorization of forum members? Lest I remind you that for some of us, surgery is also not an option, as in my case and your son's case. I think categorizing people according to your own standards is just wrong. It makes everyone who ends up having surgery, despite valiant efforts at non-surgical approaches, feel like a failure and forces them into the "surgical camp". There are not two camps here and your suggestion that there are causes contention among forum members. Unless you just like to stir the pot. I'm really disappointed in these kinds of posts that you have been posting. I don't care that you have experience running other online forums. That just gives you more experience on how to push people's buttons and take things off track AND makes you more accountable for continuing contentious conversations. There is no immoral work being done on this forum. There is simply a worldwide base of different personalities and opinions. If you think one member is being a bully, then report the bullying and don't try to divide the whole forum into camps.

I agree completely that everyone would be better served if we aren't divided into camps (surgical and non-surgical). I'm not directing this at anyone, but rather asking everyone to listen to what rohrer is saying. I think part of the problem is that often - and perhaps this is human nature to a degree - people make assumptions about others that turn out to be incorrect. I suppose I would be placed in the "surgical" camp because my son had surgery. However, I don't consider myself "pro surgery". In fact, I don't think anyone is "for" or "against" surgery, but rather realize that sometimes it is the only option. As has often been said on this forum, nobody WANTS surgery.

I happen to have a long-standing friendship with the woman who runs the infantile/casting forum. She advocates serial infantile casting as a way to avoid surgery in young children. I think she is spot on with this approach. She will recommend trying anything to avoid surgery. However, in cases where casting is not effective, she has referred parents over to me when their kids hit a certain age if those parents have expressed in interest in fusionless surgery (VBS, tethering).
In turn, I have referred numerous parents over to her who have contacted me regarding scoliosis in a very young child. I do not view her as "anti" surgery and she does not view me as "pro" surgery. We both want to help these kids in any way we can. For some, surgery is the best option. For others, it's not.

Why can't we adopt that mentality here??

[Pooka1]

Hey Rohrer, one of the newer members has a BS in Genetics.

Hearing that is like getting a new lease on life. You will have back up now hopefully. All I can really do is carry your pencil. :-)

[rohrer01]

Hdugger,
Why are you trying to divide the forum into "surgical" and "non-surgical" camps? There's room for all kinds of therapies. As far as I can tell, most people that have had surgery have tried at least some non-surgical approaches. So where do those of us that non-surgical approaches have failed fall within your categorization of forum members? Lest I remind you that for some of us, surgery is also not an option, as in my case and your son's case. I think categorizing people according to your own standards is just wrong. It makes everyone who ends up having surgery, despite valiant efforts at non-surgical approaches, feel like a failure and forces them into the "surgical camp". There are not two camps here and your suggestion that there are causes contention among forum members. Unless you just like to stir the pot. I'm really disappointed in these kinds of posts that you have been posting. I don't care that you have experience running other online forums. That just gives you more experience on how to push people's buttons and take things off track AND makes you more accountable for continuing contentious conversations. There is no immoral work being done on this forum. There is simply a worldwide base of different personalities and opinions. If you think one member is being a bully, then report the bullying and don't try to divide the whole forum into camps.

[mashkine]

Responding here to post over in Dingo's thread

Tamztom's thread has a different drumbeat, meant to make clear that he and his daughter are doing something that no one else would be able to do (i.e., the "unique patient" approach, used on Martha Hawes, et al):

I picked a couple of pages - here's a summary of a series of posts

* His daughter is extraordinary, unique, can do things that no other human being can do. (Read: this won't work for other kids)
* His daughter has JIS and not AIS. JIS patients are just able to do things that AIS kids can't (Read: this won't work for most kinds)
* And even - god help me, and even - what if someone got Dengue Fever and was too weak to go on exercising (Read: this won't work (I guess!!!) for most people because Dengue Fever is really surprisingly prevalent)
* And then a repeat of proven-wrong error about Martha Hawes exercise regime - claiming it is "more effort then most people can give". When this was first raised years ago, I think people claimed she was spending hours and hours every day, I actually wrote to her, and she told me she had spent more time at first but spent no more then an hour a day. I posted that correction, but the incorrect version just keeps creeping back into discussions.

and that's just two pages in that topic.

It's more subtle than in other topics. I suspect that if Tom's daughter had AIS, it would require a more full frontal approach. But, it's there.

Again *every* topic. Different approaches in different places. But *every* topic about non-surgical approaches, you'll always hear the same drumbeat.

I suspect Tamztom would strongly object to the argument that what he is doing cannot be replicated (in adults and/or kids), as well as the argument that AIS would be more difficult to correct than JIS. At least one adult on this forum, foofer, has reported great results after several months of corrective work, and as far as I know she was one week away from surgery. I hope she will write more about her experience on this forum despite its often hostile atmosphere.

[Pooka1]

Oh, look, I'm surrounded by neutralizing posts. Is it getting hot in here?

I thought you stated on at least 5 bazillion posts that you have me blocked. How would you know what I'm posting?