Scoliosis stories wanted

[bas2101]

Hello,

My daughter was diagnosed with scoliosis at the age of 7. She is now 13, and undergoing physical therapy 5 days a week, along with being braced full time. We have turned to bracing, along with "alternative" therapies over the last 6 years as a way to hopefully avoid surgery-even when it was advised by several orthopedists that we were making poor decisions.

I am also a writer, and am currently writing a piece on scoliosis and patients' and parents' experiences/stories with alternative therapies-even when the orthopedists advised against it. I am also interested in patients who have had surgery after trying alternative treatment that had failed. This piece is not going to be published, but rather will be used for graduate school. If I intend to publish it in the future, I would keep all privacy needed.

Ideally I am looking for stories/experiences from those living in the NYC area, but will welcome anyone willing to share.

Thank you so much.
B.Smith

I can also be reached at bas2101@columbia.edu

[Pooka1]

Has your daughter's curve remained below the surgical range while doing PT, bracing, and "alternative therapies?"

What alternate therapies have you done?

It's hard to tell if something is working because many curves will not progress no matter what you do. So the success rate is often over stated.

Others, like my daughter's, seem to progress no matter what.

[bas2101]

Hello-

We have done so many "alternative" therapies-some seemingly helpful (Bowen, Iyengar yoga, Rolfing), some neutral (Feldenkrais) and others ridiculous in my opinion (Raindrop, ASCO). But, really the only therapy that has had a dramatic affect is Schroth physical therapy in conjunction with the Rigo-Cheneau brace. In brace she is 32/38-down from 68/45. Most people think I am crazy, but she is still Riser 0 and has a lot of growth. I understand that she has a great potential to get worse, but she has grown 3-4 inches since March and has only improved. She looks like she has a completely different body. If she gets worse, or stops improving, we will have to consider surgery, but for now we will continue with what we are doing.

My post was to try and get kids/parents to share their stories with me, as I am writing a piece on scoliosis and the alternative experience-whether it helped or not. If you are interested in being a part of this, please let me know.

Thank you-b.smith

[laurieg6]

My son was diagnosed around age 5 1/2 with congenital scoliosis. For the first few years, the only thing that was recommended was to "wait and see" if his curves progressed. During that time, as well as while he was wearing a TLSO brace, prior to his surgery, we tried many alternative therapies, anything we could find to hold his curves. We tried craniosacral massage, hellerwork massage, acupuncture, chiropractic, all sort of passive treatments. I also made sure he had regular swimming lessons and free swims. I couldn't find any physical therapist, or practitioner of any kind, who could get him to do exercises just for the sake of his back. I took him to many, many appointments but nothing worked to stop the progression once his adolescent growth spurt began. I've since realized (I was in denial) that none of these treatments could have prevented his curve progression because he had one malformed bone (hemivertebra) that was causing the problem. Even his brace was only designed to hold his compensatory lumbar curve, not his thoracic curve where his hemi was located. He's since had surgery and, other than a need for ongoing PT to help with postural improvements, he's doing great and has no pain or any problems.

I think you should stress responses from people with idiopathic scoliosis though, not congenital.

[DesertJenny]

Hi Bas,

Not sure if this will help you or not, but I saw this girl's scoliosis story on Youtube. It might help for your story.

http://www.youtube.com/watch?v=V-PoZIQ1cDg