That's great news that you will be going to Shriner's Philly with Sierra! I am glad you persevered in finding an excellent place to evaluate her.
I never got your PM, but if you resend it I will be happy to respond. You should plan to be at Shriner's for several hours at least. You will check in and fill out some paperwork, go upstairs to clinic, probably to x-ray, back to clinic, where you will probably meet Janet Cerrone, the spine program PA. She will talk with you at length, examine Sierra, look at x-rays, etc. Then you will meet with Dr Samdani and possibly other surgeons. I have heard lots of wonderful things about Dr Samdani from other parents although I have not met him personally. Surgery scheduling depends on lots of factors, which will be explained to you when you are there. I am sure if they feel they can help Sierra, they will get her onto the surgery schedule in a timely manner (maybe even in several months, it really depends). To me it would seem like her case would be prioritized due to her pain, age and situation.
One last thing--Shriner's in Philly is in a very poor, run down neighborhood. This is shocking to some families when they arrive. The hospital itself is fine inside though. We stayed downtown at the Crowne Plaza which was ok; it has a Shriner's rate. If you check out www.vertebralstapling.com (mariaf here co-moderates it) there is a lot of Philly travel and hotel info which could be helpful if you are not familiar with the area.
Please let us know how things progress with your travel plans and appointment. We are here for you.
Last edited by leahdragonfly; 12-04-2011 at 09:18 PM.
Gayle, age 47
Boston brace as a teen for AIS
Oct 2010 fusion T8-sacrum w/ pelvic fixation, TLIF at L4/5.
Feb 2012 major A/P revision for broken rods
mom of Leah, 12 y/o, diagnosed Jan '08 with 26* thoracic JIS (age 6)
4/08 26 degrees, brace 16 hrs/day
9/08 17 deg. OOB - brace discontinued
9/09 30 deg, resuming brace
5/10 VBS Dr Luhmann Shriners St Louis
5/14 stable 4 yrs post-op, 14* T
also mom of Torrey, 9 y/o son, 12* T, decreasing spontaneously (from 19*)