Just starting & need advice

[emarismom]

What they know is that scoliosis driven by Chiari is quick to progress and it is unlikely that ANY bracing will help.

When Emily was decompressed, at 5, my biggest fear was that the scoli would keep progressing and we would be facing VEPTR with multiple surgeries Finding her scoli at 5 was a true blessing in my life, because we were able to deal with the underlying cause early. (It's ironic how the worst moments in our lives, can open doors we NEED opened)

Thankfully, her progression was stabilized by the surgery. I opted to try Spinecor in the hopes of a) improving the curve in a young flexible spine
b) keeping the scoli stable, if it were to progress
c) having her in the brace at the onset of puberty

As far as what orthopedics "know", well it seems they "know" far less than we believe that they know. Sometimes I feel I know more about my daughters diagnosis than any of her doctors, because I spend SO much time talking to others who are actually going through it and living it. Where as the doctors spend relatively little time with the actual patients.

[Pooka1]

As far as what orthopedics "know", well it seems they "know" far less than we believe that they know. Sometimes I feel I know more about my daughters diagnosis than any of her doctors, because I spend SO much time talking to others who are actually going through it and living it. Where as the doctors spend relatively little time with the actual patients.

Ha! Yes I think it is easy to get that impression with the state of the research being what it is... just one notch above anecdotal in my opinion. The fact that experienced surgeons differ radically in some cases in opinion supports your view.

I suspect if error bars were plotted on these graphs showing chance of progression versus Cobb angle, they would overwhelm the data. But I don't know that.

[swimmergirlsmom]

Hi Scolimom2
My daughter had a cheneau type brace made by Gez Bowman in February and we highly recommend him. We also live in San diego and have seen both Dr Newton at Children's and Dr Bess.
Since we live so close, if you would like to see my daughter's brace and observe the daily schroth exercises she is doing, we would be glad to share so you can see if this is the approach you want to do for your daughter. I will send you a PM with my contact information.

[flowerpower]

Hi Scolimom2,

I sent you a private message. I am also in North County and my kids are also patients of Dr. Newton's

Renee

[bracegirl]

Cheneau Brace

Okay, I have been in a Cheneau brace for 4 years, wore a boston for 1. While in my boston brace my curves got worse. Cheneau - not so. I am a huuuuge advicate for the Cheneau brace as well as the Schorth Physical Therapy. I was trained by Manuel Rigo, when he came to WI to train pt's in the schroth method. Now, my pt does immersion programs for out-of towners here in Milwaukee. My family is willing to host girls who come. Luke stykleather is the US specialist in the Cheneau brace, and he works in Fairfax VA, but comes to Milwuakee every 8 months ususally. it may be possible to coordinate an immersion with luke's visit. Otherwise, he gets discount hotel rates etc. for people traveling to see him. Without the cheneau brace, I would have needed surgery. It has saved my back. Please, look into it!

Contact information:
Cindy Marti (and her clinic, which includes 3 schroth trained pt's): www.sdwpt.com

Luke Stykleather:
www.orthoticsolutions.com