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

[jrnyc]

up pops the name calling again...
"immoral" "dishonest"
shoulda seen it coming...
here comes the repetition...one more time.

jess

[hdugger]

We are not surgeons and can't be giving out Cobb angle readings to each other. But some can eyeball differences. So instead of saying all that, I suggested she post the radiographs. You took offense and I cannot identify a single rational reason for your doing so. So I speculated on one. If that is the wrong one then what is the right one?

I'm going to pull out the super-charged words again.

"You took offense"
"I cannot identify a single rational reason"

I'm not sure why these words belong in this discussion, so I just wanted to put them aside. Let's just say that I strongly disagreed with what you were doing, and you could not figure out why. I believe that's the non-super-charged way to say it.

In summary: You think that her Cobb reading might be wrong, for whatever reason, so you'd like to eyeball her xrays.

My question, again, is, what business is that of yours? Why must she subject herself to some other parent on the forum "eye-balling" her xrays. Is that the standard price of admission here?

So, I'll repeat what I said before, because I think that's it's a reasonable summary of my response to your position even as restated:

"Either they are welcomed into the forum in the same way that everyone else is. Either we make a place for them in exactly the same way we make a place for everyone else. Or someone has to explain to me why it is right and proper that we do not. Someone has to explain to me why some mother coming to this forum gets the most unfriendly greeting I've seen in months just because *your* curiosity is not satisfied."

[mariaf]

I have not time for this. It seems I must to repeat always what I said before.

Flerc,

The last thing you posted to me was:

"Tell me first what part you don't understand and I'll try to say it in a better English."

So I repeated my questions asking for clarification on what I did not understand and now you say you have no time. So why did you ask me to tell you the part I did not understand if you had no time to explain?

[mariaf]

I believe I remember the exchange. Sharon had asked yet another conservative treatment parent to post their xrays (was it Tom? was it Flerc?) and that person had *responded* by asking her if she could post hers.

But that's still not the point I'm trying to make

Patient after patients posts their happy results of surgery, and we congratulate them. The first patient I've seen in months from Clear posts their happy results and they are asked, without friendly greeting, without so much as a how-de-doo:

* (a second time) if their surgeon has measured it
* if they can post their xrays

as a *greeting*. As their first, "Hey, welcome to our forum"

Questions:

- Do you think that person will feel as welcomed, as safe, as at home as the surgery patient who has been roundly welcome and congratulated by everyone?
- Do you think that person will be as likely to come back, to post again, to give updates?

and, I guess,

- If you don't think they'll feel as welcome or be as likely to come back, does that bother you?

hdugger,

I understand what you are saying and believe that your heart is in the right place. So is mine. You may not believe it, but let me tell you a story that I've told here before to illustrate what I mean.

Several years ago a mom asked me what I had heard about Spinecor. I was honest and told her that she should do whatever she felt comfortable with, but just to have her eyes open and that:

(a) I had not seen it work (she asked me this specifically) on larger curves with a child her daughter's age (I believe her daughter was 12 or so with a high 30's curve);

(b) I would demand in brace x-rays (the doctor in Montreal had convinced her to only do out-of-brace x-rays);

(c) I would see a pediatric orthopedic surgeon at the same time just so he could monitor her daughter.

Long story short, she listened to the doctor in Montreal - which I can understand because she so wanted to believe he could keep her daughter from needing surgery. They only did out of brace x-rays for maybe two years. Then I got a call from this mom, crying hysterically, because they had finally done an out of brace x-ray and the curve was in the mid 50's and her daughter would now need fusion. She also told me other things that happened along the way that made her start to lose faith in this guy who was treating her daughter. (She had the chance for VBS back when the curve was between 35-40 degrees but opted for Spinecor instead and now she was kicking herself. I told her who knows if VBS would have prevented the need for fusion - maybe, maybe not - so please don't beat herself up, etc.).

My point is that I don't want to ever get a phone call like that again or hear that total misery in a parent's voice because they felt 'taken' by someone who made what they now felt were false claims. I'm not saying that's the case every time, but that is probably where my views come from.

It's probably also because I have worked at a law firm for almost 30 years and after a while that's how one's mind works!

[mariaf]

I don't think there is a single parent trying to hide a damn thing. I think there might be some play in what they are being told by alternative treatment providers though. There is even some play in what surgeons tell patients (viz Concerned Dad's realization that his daughter's radiographs were being read in an irrationally exuberant fashion down Montreal way).

That is what I am trying to say. Maybe Sharon could have worded it differently, but I for one know her well enough to know she is not questioning the parent, but rather the provider. Some of us worry about folks being taken in by those promising the moon but with no proof or evidence to back it up (see my last post), to the point where - with some of these methods - you'd be hard-pressed to find any reputable pediatric orthopedic specialist that endorse it. And as sad as it is, there are those in every profession looking to make a buck off of someone's desperation. It's just a fact of life.

[flerc]

Flerc,

The last thing you posted to me was:

"Tell me first what part you don't understand and I'll try to say it in a better English."

So I repeated my questions asking for clarification on what I did not understand and now you say you have no time. So why did you ask me to tell you the part I did not understand if you had no time to explain?

No, what I said is I must to use the time to do something productive in talking with you about this. You are forcing me to do that, you and all of you doing what are you doing (or supporting) here and if you don't understand, read all my previous posts or ask to your friends here.

[mariaf]

No, what I said is I must to use the time to do something productive in talking with you about this. You are forcing me to do that, you and all of you doing what are you doing (or supporting) here and if you don't understand, read all my previous posts or ask to your friends here.

What I posted is EXACTLY what you said - I copied it straight from your post.

Never mind, I have no desire to argue, I just wanted an answer to the original question, which I obviously will never get.

[Pooka1]

That is what I am trying to say. Maybe Sharon could have worded it differently, but I for one know her well enough to know she is not questioning the parent, but rather the provider. Some of us worry about folks being taken in by those promising the moon but with no proof or evidence to back it up (see my last post), to the point where - with some of these methods - you'd be hard-pressed to find any reputable pediatric orthopedic specialist that endorse it. And as sad as it is, there are those in every profession looking to make a buck off of someone's desperation. It's just a fact of life.

Yes I wish I wasn't quite so "terse" in that post.

It's a fine line to walk when potentially dashing a parent's hopes and, even worse, potentially exposing that all the hard work a child did might not be a long term solution.

But I thought it was worse to come out and say there is no evidence CLEAR has helped anyone avoid surgery. I think there is no easy way to say some things.

This child may continue the PT her whole life and avoid surgery. Or her curve might stop on its own. Or CLEAR might actually have helped. It's hard to predict the future in this game.

My concern is always what is the child being told by the treatment purveyors and will the child feel blindsided later in life if they do a bunch of PT and still need fusion? Honesty matters.

ETA: Maria's point about missing potentially critical non-fusion surgery treatment windows is also very important.

[flerc]

What I posted is EXACTLY what you said - I copied it straight from your post.

Never mind, I have no desire to argue, I just wanted an answer to the original question, which I obviously will never get.

If you not understand what I said about my time in that post, ignore it and continue reading that post.

[rohrer01]

What I posted is EXACTLY what you said - I copied it straight from your post.

Never mind, I have no desire to argue, I just wanted an answer to the original question, which I obviously will never get.

Maria,
I know how you feel. Flerc never answered my question, either. I noticed he referred you to what he said to me, which is basically what he said to you. My question was, "What is the Official Western Medicine that Flerc is speaking against?" He won't answer that one, so I'm guessing he won't answer yours either.

[flerc]

Maria,
I know how you feel. Flerc never answered my question, either. I noticed he referred you to what he said to me, which is basically what he said to you. My question was, "What is the Official Western Medicine that Flerc is speaking against?" He won't answer that one, so I'm guessing he won't answer yours either.

Is not true, I referred you to a thread where I explained it as I'm doing now with her question.. and certainly is not me who should to be answering questions..

[rohrer01]

For those of you dragging me into this Clear argument, DON'T. I don't read Clear threads. I once started one here because I looked at their website and it intrigued me a little and reminded me of some of the tortuous things I was put through as a kid. They make a convincing argument but I haven't seen the proof. Yet, I briefly thought about trying it...briefly. If a real evidence based study comes out in their favor, I'll read about Clear again. I wasted a lot of time as a kid being a human guinea pig for a D.O. who was promising to cure my scoliosis. He used scare tactics like "I wouldn't be able to have children" to convince my mom to let him work on me. In the end there was zero improvement and a lot of wasted time and money, not to mention the humiliation that I felt laying there left alone hooked to electrical stimulators for long periods of time while he saw other patients.

[rohrer01]

Is not true, I referred you to a thread where I explained it as I'm doing now with her question.. and certainly is not me who should to be answering questions..

You never answered my question. If it's so hard to answer such a simple question, then do YOU even know the answer? I don't want to be referred to a thread. I want a simple, concise answer that I don't have to go digging around for.

Ask me anything you wish. I'm a pretty open book on this forum. But it had better pertain to scoliosis on some level.

[flerc]

You never answered my question. If it's so hard to answer such a simple question, then do YOU even know the answer? I don't want to be referred to a thread. I want a simple, concise answer that I don't have to go digging around for.

Ask me anything you wish. I'm a pretty open book on this forum. But it had better pertain to scoliosis on some level.

Why I should to repeat every time what I said many times before? You have time for this, use your time looking for that answer there.

[flerc]

If would be something to do with scoliosis, something that might help you with your health problem, although you (as all your accomplices) are forcing me to waste the time I have to talk about scoliosis in this stupid way, of course I would answer you in a more direct way.