Scoliosis Boot Camp

[Pooka1]

If you says that something is impossible, one case is a counterexample.
A counterexample prove that the claim was false.
And if it was false, how are you sure that could not be another case?
And if it might be another case, why are you sure that cannot be yours?

They are charging innocent, desperate people thousands of dollars and have no proof the treatment works even after about 10 years. And they say they don't need evidence.

I am getting to the point where I am not feeling so sorry about gullible adults. But we are talking about a child here who will be put through a bunch of treatments that have never been shown to work. He is going to miss some school when he gets the surgery. He probably shouldn't be wasting time with other stuff. Don't you care about this kid at all?

[Pooka1]

Is remarkable being so young.. your son is really atypical.

He's a kid and should be forgiven for not being born knowing orthopedic medicine. It is understandable that he might try to avoid surgery because it is scary. It is predictable a kid would not understand the need for evidence. While all of this is understandable and sad in a kid, it is not so becoming in an adult who should have the faculties to ask for evidence. Parents must be advocates which means they must be evidence-driven and rational.

What do you call alternative medicine that works? Medicine.

[tkare]

Thank you everyone for your input. I was hoping I could get some information from others about this because my so wasn't willing to take my word for it that this is unproven and highly unlikely to help in his case. It is so hard for him to understand that because his curve was severe at diagnosis we missed the boat on the less invasive options. He was frustrated and needed to hear this from practitioners other than surgeons to believe it. After speaking with several Schroth method practitioners who all told me that with bracing and very hard work the most they could hope for is to buy him a bit of time to get comfortable with surgery I think he finally understands that this really is his only option. But yes he is a kid and the boot camp website makes so pretty big claims about what they can achieve so I was up against that. Sometimes the Internet is not such a good thing!

[flerc]

They are charging innocent, desperate people thousands of dollars and have no proof the treatment works even after about 10 years. And they say they don't need evidence.

It has absolutely nothing to do with what I said in that post. I was saying that is not the some one case that none case. Try to understand what I mean before saying what you use to say. My English is so bad?
Are they saying they don't need evidence? Where may I read that?

I am getting to the point where I am not feeling so sorry about gullible adults. But we are talking about a child here who will be put through a bunch of treatments that have never been shown to work. He is going to miss some school when he gets the surgery. He probably shouldn't be wasting time with other stuff. Don't you care about this kid at all?

'have never been shown to work.' and 'no evidence' seems to to means different for us.
I may also ask you if you don't care about this kid at all. Without any doubt I can if we are talking about fusion about the only possibility you are saying he has. An unnatural, old and not satisfactory solution, at least for many people (I don’t know enough about that boy, I hope may be good for him) and mainly (as we may say) Irreversible. You talk as if we would talking about taking off a teeth.

[flerc]

He's a kid and should be forgiven for not being born knowing orthopedic medicine. It is understandable that he might try to avoid surgery because it is scary. It is predictable a kid would not understand the need for evidence. While all of this is understandable and sad in a kid, it is not so becoming in an adult who should have the faculties to ask for evidence. Parents must be advocates which means they must be evidence-driven and rational.

But first they need to understand what evidence and rational means.. mainly the difference between evidence and published and well known cases and between logic and dogmas.. also about facts and clues..
And first of all (at least in forum like this) the difference between trying to help and wanting to convince.. the damage that may be done, even with the best intention.

You should to reflex in all of that, mainly in the last. Fortunately this mother seems to think as you, that surgery is the only one option for her boy (and of course probably is right), but even if she would have waiting about good opinions about Clear, with the hope to find the way to avoid surgery, you would had said the same, going against all of that as ever.

What do you call alternative medicine that works? Medicine.

‘Works’ also seems to have different meanings for us. Is a good logic training to be sure about the meaning of a word before using it. Try to do it, specially when you are posting here.

[flerc]

After speaking with several Schroth method practitioners who all told me that with bracing and very hard work the most they could hope for is to buy him a bit of time to get comfortable with surgery I think he finally understands that this really is his only option

Tkare, sorry I'm asking you about that, but Schroth also not exists in my country (as Spinecor, Torso Rotation..) so I cannot be so sure about what they really think about requirements to may avoid a surgery. Did they say you exactly why they can not avoid it in her case?

[Pooka1]

but Schroth also not exists in my country (as Spinecor, Torso Rotation..) so I cannot be so sure about what they really think about requirements to may avoid a surgery.

WHO CARES WHAT SCHROTH THINKS ABOUT HOW TO AVOID SURGERY!

What is the evidence they helped anyone avoid surgery???

Are surgeons just too dumb or too evil when they say there is no proven PT therapy? Which is it? Please state WHICH.

[flerc]

But yes he is a kid and the boot camp website makes so pretty big claims about what they can achieve so I was up against that.

What I would do in your case, is to say him that he must to find a REAL case the more similar to him, but really know it (talk, meet, see x-rays). Otherwise, if surgeons say is impossible and they say is possible, which is the reason to believe more in Clear than in surgeons? Neither surgeons, nor Clear works free. He need rational arguments and only pretty (as also ugly) claims are not.

Sometimes the Internet is not such a good thing!

I agree, it should be used to shared information, not to trying to convince nobody about anything as unfortunately happen and also in subtle ways.

[tkare]

flerc, the three Schroth method providers made it very clear to me that because of his curve magnitude, with bracing and very hard work, he might have hopes of holding progression, but it would take a commitment to doing the exercises forever in hopes to hold at the level he is at, they also did not promise that it would work but that if he was trying to buy time it might be worth a try along with a brace. They seemed to indicate that he is really on the highest end of the parameters recommended for this in terms of curve magnitude. Although he may be committed now to the exercises, even he agrees that he is not sure he could keep it up forever, which would have him needing surgery later in life where the risk would be higher and the correction would not be as good. I really felt All of the providers I spoke with were being very honest and not trying to "sell" anything or make and promises about what can be achieved.

[flerc]

Thanks Tkare, certainly is similar to what they said me by email when my daughter had very similar age and degrees than your son now.. I think they was from Germany.. as also other Clinic in Spain they seemed to me realy very honest.. not trying to convince, only giving all he information in order to take the best decision. As allways should to be.

[Pooka1]

not trying to convince,

Yes by all means let's not try to convince people of FACTS. That there is no evidence for any alternative treatment. Let's let them piss their money away, get their kid's hopes up cruelly, and not model rational, logical thinking and reasoning skills. Must not convince people of these things. Just continue with the piss-poor science skills they learned in school. Convincing is the worst!

[flerc]

Not use this thread to do your work (your reason to be here). Try to be respectful. Tkare has a serious problem and need this thread for help. She not needs to be convinced for you about anything.
I replied here

.. and that all the other health professionals are criminals, non surgical treatments don´t works, cannot works, people believing in them are desperate/stupid..

[mariaf]

Hi Tkare,

I agree with what Sharon and Jess have said.

Unfortunately, while I can certainly understand the desire to avoid fusion if possible, I have not seen any evidence whatsoever that CLEAR or scoliosis boot camp or any similar program can correct a 60 degree curve.

My son was diagnosed nearly a decade ago and during that time I have researched and read endlessly, spoken to dozens of doctors, joined several scoliosis forums/websites (and even co-moderate one), and unfortunately to my knowledge, the only way to successfully treat a 60 degree curve is with surgery.

I just want to you know that you are doing the right thing, the only thing, you can in this situation for your son. Don't let folks promising the moon (knowing they can't deliver) let you second-guess yourself, ever. Some of the baseless claims that are made by folks just looking to make a buck really make me angry.

I hesitate to mention another option for fear of confusing you in any way, but there is one surgical alternative that is a non-fusion procedure that has been used on curves even as large as your son's. It is called vertebral body tethering. I’ve attached a link (hope it works). I don’t know if your son would even be a candidate but if not, then perhaps it could help someone else.

While it is stated that the ‘ideal’ candidate’s curve is no larger than 55 degrees, I do know of curves in the 60’s where this was used. The article was a preliminary report but the doctors are learning more as they go.

The other criteria is that there has to be a decent amount of growth remaining for tethering to be successful.

As of right now, the only two places where tethering is performed are California (Dr. Peter Newton, I believe in San Diego) and Philadelphia at Shriners Hospital for Children.

Again, I hope this does not confuse you and I am NOT trying to sway you from your current plan, but I felt I would be remiss not to at least mention it – as I said, either to help you or someone else.

I truly wish you and your son all the best – these kids are so resilient, and I’m sure he’ll do great!

http://www.vertebralstapling.com/upl...NG_May2012.pdf

[flerc]

Tkare, I hope this article I have just found may help you to take the best decision.

http://europepmc.org/articles/PMC308...Sf7fxWA0MwTD.0

Surely I need to read the full article to be sure I'm not interpreting it bad, but sure is not usual for me to read something like this..

This concept of remodeling in adults has been effective in Orthodontics. Bracing teeth, once considered successful only in children, is now being offered to adults.
.

These results suggest that if appropriate loads can be applied to human vertebrae, scoliosis with vertebral wedging can be corrected without a spinal fusion in both adolescents and adults.
.

Although nonfusion operative correction of AIS is be best suited for young patients with small curves, it may also achieve correction of large curves in older patients via the process of remodeling of the vertebrae and ribs over a longer timeframe.

[tkare]

Mariaf, thank you so much. I had read about teathering but was under the impression that he was outside of the range where that could be considered. I will check into it. I do honestly think that with his curve being diagnosed so late, we kind of missed the boat on anything but a surgical solution. It is just so hard because my son is having such a hard time accepting it. Thanks for your encouragement!

Flerc, very interesting article, I had read about that wedgeing being invsetigated by some Shriners docs but I am not sure which ones. I just wish science would catch up faster, the one thing we dont want to do is wait to long and risk him having to be fused further into the lumbar area. I know many adults have this surgery, but it seems there is a time window where the recovery is much easier and the correction better as well as the ability to fuse less is better in kids.