Daughter just diagnosed! Help!

[bbrian35]

Chris, Your post and the threads posted in reply show you just what happens on this forum. Don't let yourself get too discouraged by certain posters. If I would have listened to Pooka when I logged on to this site looking for advice and support 7 months ago, I would have failed miserably in helping my daughter. She was not in the upper 40's like yours, only 39 degrees, but a high apex with a tight curve T5-T9. According to posters here and certain studies, her curve was difficult and the type destined for progression. I sit here today after 6 mos. of RSC brace and Schroth therapy and her unbraced curve has most recently been measured at 31 degrees. She is a Risser 2 (1 when we started) and still has time for greater correction. There are those that will tell you "there is no proof" for this or that. Save yourself the trouble of putting up with those who care more about arguing and trying to show how well studied they are and read through the forum. PM those with similar stories or those who have done what you may be considering for treatment. They will respond with their experiences, what's worked for them and what hasn't. We can also offer emotional support instead of the combative, argumentative stuff your post has elicted. I know just how you feel. Feel free to message me and I can give you more specifics of my daughter's case and what we've learned in the process. Don't let the Pookas of this world tell you that things aren't possible and that people only want to take your money. Maybe bracing and PT didn't work for them or they chose a different treatment plan that didn't work and now they have to vent their frustrations by discouraging other people. They will tell you how well studied and scientific they are, refer you to this study or that, and many other things as the basis for considering their opinions. Do yourself a favor, take what you need and leave the rest behind. I can tell you this, I chose the "unproven", "want to take your money for exercises that don't work" route and couldn't be happier. They worked despite all of the wisdom from certain people telling me that they wouldn't. They are working very well! Good Luck to you and yours!

[Pooka1]

Sounds like a lot of people are getting cheated out of their Nobel.

If it doesn't make sense it probably isn't true. If people would stick with just that one thing then we wouldn't need the Better Business Bureau to save folks (and shamefully their kids) from themselves.

THINK. It's IBM's motto but it's useful here.

[Pooka1]

If I would have listened to Pooka when I logged on to this site looking for advice and support 7 months ago, I would have failed miserably in helping my daughter.

JIS versus AIS. Apples and oranges. JIS kids can't be fused... you have to attempt conservative treatments. You are deliberately confusing an innocent parent with an innocent child. You are part the problem, not part of the solution. We are talking about a 48* AIS curve. Your post is not helpful because you are not recognizing these important distinctions. I agree with one thing... take this nonsense to PMs.

[Pooka1]

Backfire

Chris, Your post and the threads posted in reply show you just what happens on this forum. Don't let yourself get too discouraged by certain posters. If I would have listened to Pooka when I logged on to this site looking for advice and support 7 months ago, I would have failed miserably in helping my daughter. She was not in the upper 40's like yours, only 39 degrees, but a high apex with a tight curve T5-T9. According to posters here and certain studies, her curve was difficult and the type destined for progression. I sit here today after 6 mos. of RSC brace and Schroth therapy and her unbraced curve has most recently been measured at 31 degrees. She is a Risser 2 (1 when we started) and still has time for greater correction. There are those that will tell you "there is no proof" for this or that. Save yourself the trouble of putting up with those who care more about arguing and trying to show how well studied they are and read through the forum. PM those with similar stories or those who have done what you may be considering for treatment. They will respond with their experiences, what's worked for them and what hasn't. We can also offer emotional support instead of the combative, argumentative stuff your post has elicted. I know just how you feel. Feel free to message me and I can give you more specifics of my daughter's case and what we've learned in the process. Don't let the Pookas of this world tell you that things aren't possible and that people only want to take your money. Maybe bracing and PT didn't work for them or they chose a different treatment plan that didn't work and now they have to vent their frustrations by discouraging other people. They will tell you how well studied and scientific they are, refer you to this study or that, and many other things as the basis for considering their opinions. Do yourself a favor, take what you need and leave the rest behind. I can tell you this, I chose the "unproven", "want to take your money for exercises that don't work" route and couldn't be happier. They worked despite all of the wisdom from certain people telling me that they wouldn't. They are working very well! Good Luck to you and yours!

This post above is an illustration of how facts not only don't change people's minds but can make them more entrenched in nonsense...

Facts don’t necessarily have the power to change our minds. In fact, quite the opposite. In a series of studies in 2005 and 2006, researchers at the University of Michigan found that when misinformed people, particularly political partisans, were exposed to corrected facts in news stories, they rarely changed their minds. In fact, they often became even more strongly set in their beliefs. Facts, they found, were not curing misinformation. Like an underpowered antibiotic, facts could actually make misinformation even stronger*.

“Area Man Passionate Defender Of What He Imagines Constitution To Be,” read a recent Onion headline. Like the best satire, this nasty little gem elicits a laugh, which is then promptly muffled by the queasy feeling of recognition.

http://richarddawkins.net/articles/4...facts-backfire

The context of the article is political but it seems to apply to everything. What makes it worse in the present context is there is an innocent child (with a 48* AIS curve) involved.

[jrnyc]

hi Chris
some on forum are just trying to save you the time, money and grief of believing in and trusting certain doctors and treatments that are not only unproven, but sometimes actually fraudulent...

Sharon, i thank you for sharing your knowledge...and also for sharing the experience you have had with your daughters' treatments and surgeries! you have repeatedly demonstrated how much about the spine and scoli that you've researched, learned and gone through personally...and i know how good your intentions are...
not everyone will appreciate it...but i certainly do!

jess

[Pooka1]

Thanks, Jess.

It is so hard to find the middle ground between laying out the facts and exploding the hopes of parents to avoid surgery for their children.

This scoliosis game is so hard. So little is known. But that doesn't mean nothing is known. We have some data on what 48* AIS curves do and pretending otherwise or holding out for long odds or deliberately conflating that with a smaller JIS curve where fusion is not on the table is not helpful to innocent parents and is actually harmful to innocent kids.

Science/medicine is the only game in town whether parents want to acknowledge that or not. Alternative purveyors will always be out there snaring the poor bunnies though.

[bbrian35]

Wow Sharon, I'm honored-so many posts to waylay your frustration from my little post? Again, you degrade to personal attack mode but it was expected. Where did I suggest any particular treatment? I'm just highlighting what happens to posts in this forum. People come here for support and info, and their post are hijacked and taken off course. As always, Pooka needs the last word in such a way to say " I'm right, you're wrong, I know so much more' blah, blah blah". I remember coming here for the first time feeling hopeful and relieved that such a place existed, only to have the same thing happen to my post as what happened to this one, a degrading exchange of back and forth one-upmanship that served no purpose in addressing the original post. My suggestion to Chris is simple- read, read, read, take what you need from here, exchange messages, seek out other resources and get the help of experienced clinicians and practitioners to help your daughter. Had I listened to what was suggested here, I would have done nothing and supposedly my kid's curve would have been fine with no intervention as "there is no proof bracing works". Anyway Sharon, here's your spot for that last word you seem to covet so dearly. Quote and disparage to your content. Personally, I think you need to find other things to do with you extra time than prowling this part of the forum. Spew your brains out in the research section. If people want that information, they know it's there. More than anything though, I pray that you find the help you need Chris.

[bbrian35]

[QUOTE=Pooka1;103583]This post above is an illustration of how facts not only don't change people's minds but can make them more entrenched in nonsense...


Fact is-the treatment is working despite the "fact" it doesn't. Preposterous, isn't it?!

[jrnyc]

i can see exactly who is resorting to personal attacks...and it's not Sharon...
that is one nasty post!

jess

[bbrian35]

Just saying what is. Sharon quotes and disparages quite often just to "one up". You can see many examples of multiple replies in a row after someone posts anything contrary to her beliefs (which of course as she will confirm are based entirely on solid, scientific data, much of which I'm sure is). If she wants to quote me and disparage me simply for the sake of disparagement, I don't think I'm out of line responding in kind. Sharon has much to offer, but so many of us know that much is offered that is not in the spirit of helping. It is to disparage. I can see her sitting at her computer after reading a reply to something she wrote, thinking how to one up the last post, sending, remembering she forgot something, replying again and again until she gets the best and last final word. Unless you agree with Sharon, you're wrong most every time. It's time to give this thread back to the topic of "newly diagnosed".

[AILEA]

Hello Chris.

Yes, my dd started with a 38 curve, when she was 13 years old and last year she was at 25º.
She has "only" worn her brace. I attribute the reduction to the fact that the first years, she had a very flexible curve, so she had a great in-brace correction.

She has not been very compliant wearing the brace.... that’s why we tried the Spinecor for a few moths, a flexible brace, but it didn’t work for her.
Perhaps if she had been more compliant her curve will be smaller today?

In a few months, she is going to have her "one year brace free x-rays". I know that her curve can return to the same it was when she was diagnosed; sometimes it happens. Perhaps her curve will increase when she gets older, sometimes happens. But maybe her curve will always be around 25º, because it sometimes happens too. There is a possibility, so that’s the reason I tried bracing.

We all have been were you are now, and we only try to help with our experiences.
Good luck.

Ailea

[jrnyc]

that is your opinion, bbrian35...and it certainly doesnt speak for me...pr many others, i'd bet...
your kinds of posts are the reason i wont be reading forum much for a while...attacks on people that get personal and abusive make me sick!

some people "just cant handle the truth", as Jack Nicholson said...
presenting facts and research should be welcomed, unless...well, refer to above quote!

jess

[Sherie]

that is your opinion, bbrian35...and it certainly doesnt speak for me...pr many others, i'd bet...
your kinds of posts are the reason i wont be reading forum much for a while...attacks on people that get personal and abusive make me sick!

some people "just cant handle the truth", as Jack Nicholson said...
presenting facts and research should be welcomed, unless...well, refer to above quote!

jess

No, that's not just bbrian's opinion. It speaks for me and probably many others here. I don't post here much because of the rants that go on and on and on.

Speaking of presenting facts and research, I just posted that TSRH research study and it was immediately discredited by you and others before you even bothered finding out all the facts behind the study, that's the "truth"!

[Sherie]

Hello Chris.

Yes, my dd started with a 38 curve, when she was 13 years old and last year she was at 25º.
She has "only" worn her brace. I attribute the reduction to the fact that the first years, she had a very flexible curve, so she had a great in-brace correction.

She has not been very compliant wearing the brace.... that’s why we tried the Spinecor for a few moths, a flexible brace, but it didn’t work for her.
Perhaps if she had been more compliant her curve will be smaller today?

In a few months, she is going to have her "one year brace free x-rays". I know that her curve can return to the same it was when she was diagnosed; sometimes it happens. Perhaps her curve will increase when she gets older, sometimes happens. But maybe her curve will always be around 25º, because it sometimes happens too. There is a possibility, so that’s the reason I tried bracing.

We all have been were you are now, and we only try to help with our experiences.
Good luck.

Ailea

Hi Ailea

I'm very happy for your daughter. We were trying the spinecor around the same time, didn't do us any good either. I wonder how Gerbo and some of the others kids are doing now?

[bbrian35]

Brace yourself!!

No, that's not just bbrian's opinion. It speaks for me and probably many others here. I don't post here much because of the rants that go on and on and on.

Speaking of presenting facts and research, I just posted that TSRH research study and it was immediately discredited by you and others before you even bothered finding out all the facts behind the study, that's the "truth"!

Seems it does also speak for many others. The messages I have received attest to that. I'm not here to start any fights, I just think much more can be accomplished to help and inform others without the obsessive putting down and chastising of others comments and posts. With just a minimal amount of research and input from those in the profession, we are all aware that bracing is not a cure nor is it for correcting Cobb angles. It may not be indicated for all cases either. It is meant to hold a curve or inhibit it's progression to avoid surgery when possible, or delay it until the greatest amount of skeletal maturity can be reached before surgical intervention. Correction is a bonus. If something worked for someone, why not a note of congratulations as opposed to an all out effort to debunk results that have been personally realized. My wish for anyone living this ongoing treating and decision making regarding scoliosis is that it could be simple and clear cut. It's not and we all live it one way or another and look to places like this for information and support. My sincerest best wishes go out to all of you and your kids so they may live the best life possible in lieu of everything scoliosis brings to our lives! God Bless!