Shriners Philadelphia
Hi there,
I am sorry to hear of your daughter's scoliosis and progression. My daughter was diagnosed at age 6 so I certainly understand your concerns and questions. I definitely agree you need an outside opinion from a pediatric orthopedist who sees lots of juvenile scoliosis patients.
I would like to second the recommendation for Shriners Philadelphia. We took Leah there for a consult with Dr Betz when she was first diagnosed at age 6. I think you have gotten the wrong impression that they just focus on surgery. That is not the case at all. While they do perform spinal surgeries for many young and adolescent scoliosis pts, they are actually quite conservative and always try bracing first unless there is some contraindication. We pursued fusionless VBS (vertebral stapling) surgery (and ended up having it in St Louis due to scheduling delays) as a choice, an alternative to bracing, because my daughter did not take well to bracing, and since I was unhappily braced myself as a teenager, I had great difficulty forcing her into 9-10 years of bracing. But the choice was always ours. No pressure whatsoever towards surgery. I think at your daughter's age and current curve her chance of surgery at some point are extremely high, but I am sure that if you want to continue with bracing at this point you would not meet resistance to that plan in Philadelphia, unless there was some pressing reason to do surgery now.
I would strongly encourage you to contact the PA for the pediatric spine program in Philadelphia, Janet Cerrone, and inquire about a consultation. Janet is an extremely nice person, wonderful with kids and parents alike, and she will be able to answer some of your questions and facilitate a consultation if you desire one. She usually replies to e-mails within a few days. Here is her e-mail: janetcerrone@comcast.net
BTW, has you daughter had a full-spine MRI? If not I would push for one to rule out intraspinal causes of her scoliosis. Scoliosis in a child in her age group is not common, especially since you noted her rib hump a few years ago.
Good luck, and please let us know how things are going.
Last edited by leahdragonfly; 09-08-2011 at 09:45 PM.
Gayle, age 50
Oct 2010 fusion T8-sacrum w/ pelvic fixation
Feb 2012 lumbar revision for broken rods @ L2-3-4
Sept 2015 major lumbar A/P revision for broken rods @ L5-S1
mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
2010 VBS Dr Luhmann Shriners St Louis
2017 curves stable/skeletely mature
also mom of Torrey, 12 y/o son, 16* T, stable