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  • #31
    caveat emptor

    buyer beware.

    Whether you live in the US, UK, CA or AU. . .it still holds true. I think all points of this discussion have been well stated.

    In a capitalistic society, we have many choices about our health treatments and medicine. I am not one to seek alternative therapies, but I think that they have their benefits. Also, I want to point out that even MDs and hospitals give a disclaimer to all patients in the form of "Patients rights and responsibilities". If you read these carefully, you will see that it is a patient's responsibility and not a right to ask questions.

    This is why every doctor will ask you if you have questions. (You'd better ask quickly.) And before surgery you are asked to state in your own words what procedure you will be having and you sign a document saying that you had the opportunity to ask questions and had all of your questions answered.

    I think this is an important point because nobody, even doctors, don't have to tell you anything about your treatment unless you ask.

    p

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    • #32
      Hi everyone: you might remember me I have the 3 daughters all diagnosed with varying degrees of scoliosis this past fall (from Wisconsin) My 5yr old has the worse curve 39thoracic 33lumbar. Well, we just returned from Shriner's in Erie only to be told that after 5mo of wearing the spinecor brace there has been no improvement in her curves. They have stayed the same. What was interesting to us as we also have had our daughter doing the Clear Institute therapy 3x/week for the last 4months and were led to believe that her x-rays by the chiro showed her at 26/13...we were feeling like we had just had a new baby. We were not mentally prepared to hear Dr. Sanders say no changes. What was up??? He looked at the chiro's films and agreed the markings were correct and that she is probably getting temporary relief of the vertebre not being as compressed but it rebounds back. She had her treatment Thurs and saw Dr. Sanders Mon. so that means in less that 72hrs all that work our daughter goes through is for nothing!! We confronted our chiro yesterday and he is going to get in touch with Dr. Woggon and find out "whats up" afterall he just spent all this money on new equipment and training sessions with Dr. Woggon and for what...to have parents like us come in and demand answers!!!! Dr. Sanders from Erie told us to take our daughter out of her brace and leave her be. He said her curve could just stay like it is always or till at least shes 10-12 then her growth spurt will happen and if the curve is going to progress then it will happen regardless of if she is braced or not. He apparently will be participating in a national study of kids being braced and not being braced and the progression of the curves. I guess he thinks we will be first to not be braced. He offered nothing else. In Jan. he offered seriel casting or an over correcting night brace now nothing but wait and see. So, we are out $$$$ in therapy and a wasted trip to Erie that although no charges from them it still costs $$$$$$$$ to get 3 children there to be seen. Dawn

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      • #33
        Hi Dawn

        I'm so sorry that things aren't working out. I know you were hopeful about this. I'm glad to hear your chiro is going to speak to Dr. Woggon, although I'm sure he's going to have an answer ready for him. It's very frustrating when you are so sure that it's working only to be let down again and again. Are you going to seek any other opinions? I really don't know much about this, but I wonder if your daughter is a candidate for stapling? I hope you find some answers.

        Take care

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        • #34
          Originally posted by jaymes10
          Dr. Sanders from Erie told us to take our daughter out of her brace and leave her be. He said her curve could just stay like it is always or till at least shes 10-12 then her growth spurt will happen and if the curve is going to progress then it will happen regardless of if she is braced or not. He apparently will be participating in a national study of kids being braced and not being braced and the progression of the curves. I guess he thinks we will be first to not be braced. He offered nothing else. In Jan. he offered seriel casting or an over correcting night brace now nothing but wait and see.

          OMG I can't believe dr. Sanders is participating in that ridiculous study!!!!! I also can't believe he told you to take your daughters out of the brace, like what is up with that?????! I'm so sorry you wasted your time seeing him, I know its a big endeavor to make such a trip! As a last resort, I would see Drs Rivard and Coillard. If it were me I wouldn't take my daughters out of the brace.


          *

          Canadian eh
          Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

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          • #35
            I'm amazed that a doctor could advise removing a young child from a brace too! Children grow fast too - their curves are just as likely to progress as an adolescent's! Just because scoliosis usually affects teens who go through adolescent growth spurts doesn't mean that a prepubescent child's curve won't progress.

            I wore braces and bodycasts as a child after being diagnosed at the age of 6 months with infantile idiopathic scoliosis, and despite the braces and casts holding my curves pretty well, my scoliosis still progressed slowly until I finally had surgery at the age of ten. My curves were about 62/40 degrees at 6 months old, and 76/50 degrees aged 10. Without strict use of the braces and casts, they would have been a whole lot worse!

            Please, do NOT stop bracing your daughter! Celia's daughter is getting on amazingly well with the Spinecor - do listen to what she advises, she really knows her stuff.

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            • #36
              Toni,

              That's so sweet of you to say that about me?! I'm just muddling through this and everything I know about scoliosis I learned from support groups and believe me, after what I've been through I need the most support of all!


              *

              Canadian eh
              Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

              Comment


              • #37
                Well, you're an inspiration to all the other parents out there.....you did all the research you could, made intelligent choices to get the best possible treatment for your daughter, and look at the result! 60 degrees to practically nothing is truly amazing. I know such great results won't always be possible because some kiddies' curves will be stiffer and more complex, but it's still an amazing achievement that should give hope to a lot of people :-)

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                • #38
                  If I didn't believe in bracing, my daughter would already be a veptr candidate by now...so I definitely believe in it! Bracing doesn't work if the curve is past the point of no return which is what most doctors wait for anyway...so it becomes a self-fulfilling prophecy.


                  *

                  Canadian eh
                  Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

                  Comment


                  • #39
                    Interesting thread. So what is the outcome of all of this? Hate to fan the flames, but my son has been in SpineCor for two years now... and has gone from 24/19 at initial bracing to 55/38 today... he is set to start Clear on Monday. Now I'm on the fence. Dammit.

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                    • #40
                      Highly suspect ...

                      Read the press release dated July 2007 - from two chiros allegedly trained at the CLEAR Institute.

                      Most interesting are the statements about surgery:

                      "Surgery includes implanting a Harrington rod for the correction of the disease. However, after many complications, including rusting and corrosion, bending, or breaking completely, proved that this method is ineffective. Some sufferers undergo surgery again to remove the rod. Every year thousands of post-surgery patients are legally defined as permanently disabled for the rest of their lives, and follow up x-rays in some cases reveal that their scoliosis returned to pre-operative levels. "

                      At best, the description of current surgical techniques is outdated (by, oh, about 15 years or so ...).

                      At worst, it's a deliberate, manipulative falsehood designed to round up patients for quakery (ala "Copes").

                      Personally, either one (whether they're uninformed or liars) would make me run the other way. It's just infuriating to see "so-called professionals" prey on parents and patients (and ultimately, your insurance company) with snake oil.

                      I know as parents we are willing to try almost anything to help our kids, but I'd have a really difficult time buying into their claims (especially with the first hand stories here).

                      Regards,
                      Pam
                      Fusion is NOT the end of the world.
                      AIDS Walk Houston 2008 5K @ 33 days post op!


                      41, dx'd JIS & Boston braced @ 10
                      Pre-op ±53°, Post-op < 20°
                      Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                      VIEW MY X-RAYS
                      EMAIL ME

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                      • #41
                        Originally posted by BlueCrystalMan
                        Interesting thread. So what is the outcome of all of this? Hate to fan the flames, but my son has been in SpineCor for two years now... and has gone from 24/19 at initial bracing to 55/38 today... he is set to start Clear on Monday. Now I'm on the fence. Dammit.
                        We all understand your desperation to avoid surgery. My mom delayed mine after the surgeon said I should have surgery very soon. During that 6 month delay my curves increased so much that less correction was obtained and, at that time, I was stlll left with significant deformity. (Read my signature)

                        Some curves will progress despite the most valiant attempts at bracing and even after bracing was successful.

                        A curve of 55 deg is approaching the degree recommended for surgical intervention and is likely to progress the rest of his life. Just keep in mind that if your son's curves progress despite Clear Institute ministrations he will face eventual surgery with higher curves and greater deformity. As a medical professional myself I personally would not do the Clear Institute thing for my child because it does not follow evidence based science. No one on this forum, using that modality, has had any permanent improvement in their curves. (Short -term possibly).
                        Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
                        Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

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                        • #42
                          Bluecrystalman

                          I was one of those desperate parents. I put my daughter through Clear Institute with Dr. Woggon (founder) and bought several thousands of dollars worth of equipment for home use. It was a waste of money and time. I would not go that route again if we had to do it over again. There is some initial improvement, but like Karen said, no long term correction. In fact, she did increase during the 3 month period when she was doing the home routine. I don't necessarily attribute that to the therapy, she'd been increasing anyways for the past year.

                          The routine is pretty long and intense. She was to do it 2 times/day and it took approx. 1.5 hours. She was getting up at 5:30 in the morning to get it all done in time for school. She was pretty burned out by the 3 month mark and Dr. Woggon "predicted" it would take 4 years to straighten her spine, this is all hypothetical since I haven't heard or seen any evidence that anyone has actually achieved permanent correction.

                          I'm sorry, but I think you're wasting your money. I think Schroth has a longer history and appears to have some credibility though it sounds like the intent is to hold the curve and that's only as long as the exercises are done. It will depend on the motivation of your son.

                          As you can see in my sig, my daughter recently had surgery and I'm happy to report she's doing great. Surgery has not turned out to be as bad as I imagined, in fact, we're very happy with the results. She looks great and feels good. Her chest and hips are very symmetrical, no more hip, knee and shoulder pains. If your son eventually ends up with surgery, it will be ok. Just be sure to find a very good, experienced surgeon. Please let me know if i can answer any questions regarding clear institute.

                          Good luck

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                          • #43
                            I put my daughter through Clear Institute as well with no success. It seemed like the 'right' thing to do at the time. To me you don't have very many alternative options. We went into it thinking...if it doesn't work then at least I will never have to wonder if it would've...maybe some see that as crazy, but when your child has scoliosis you're pretty desperate to try anything that might work and avoid surgery.

                            Structural--I'm a little curious what your opinion is on the Scoliosis Rehab in Wisconsin and the Cheneau brace?

                            --Tina

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                            • #44
                              BlueCrystalMan:

                              Our daughter tried the Pettibon (Clear) treatments for about three months last Fall. Her curves did not progress while she was doing it however we stopped because the chiropractor wanted her to wear a Boston brace which is progressively tightened while doing whole body vibration combined with neck traction in a traction chair...then the brace is kept on for several hours in the tightened position until bedtime. This seemed too wierd for us and potentially dangerous. She was doing over the door neck traction but got a tortocollis which may or may not have been caused by the traction so we stopped that too. She was doing wobble chair exercises too.

                              At this time we are doing Structural Integration (Rolfing) which we consider much safer and we are seeing some real results after about six treatments spaced two weeks apart. She also does lots of yoga exercises for scoliosis.

                              Ruth
                              Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

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                              • #45
                                Blue Crystal Man--

                                I remember seeing your posts on the SpineCor thread several months ago. Could you remind me, how old is your son?

                                Mary Ellen

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