I am sorry to hear of your son's diagnosis. I know what a shock it comes as.
I am bothered by the comments made by the surgeon you saw, and I would strongly recommend you find another surgeon who is highly skilled with congenital scoliosis. I am quite sure your son has surgical options that aren't expected to result in paralysis. That comment just comes off so callous.
My daughter's scoliosis is entirely different from your son's, but she had really fantastic care at Shriner's St Louis under Dr Scott Luhmann. I would recommend him to anyone. Also, the spine team at Shriner's Philadelphia is one of the very top pediatric spine centers in the world. I am quite sure they will see your son for a second opinion. You can e-mail Janet Cerrone, the spine team PA, at email@example.com . She can tell you if your son would benefit from visiting Shriners Philadelphia for a second opinion.
I know it may seem shocking the thought of traveling across country for medical care, however, your son's case is very unusual and many scoli surgeons will not be equipped to treat him. You will not regret traveling to St Louis or Philadelphia for care. We travelled from Oregon to Philadelphia for a consult, then later had my daughter's surgery done in St Louis, and it was well worth the thousands of miles we travelled.
In case you are not familiar, Shriners Hospitals are a network of cutting-edge specialty orthopedic hospitals that is some cases also treat children with burns or spinal cord injuries. They provide all care to children 18 and under free of charge, regardless of ability to pay. Families with insurance will be asked to provide their insurance info and the insurance will be billed, but the family will never see a bill or have any amounts due. It is truly amazing. The only requirement is that the child will benefit from their specialized services. You do not have to have a Shriner sponsor.
I would recommend you e-mail Janet Cerrone, and give her a few days or a week to get back to you. I believe she will be able to advise you about getting the most appropriate second available for you son.
Good luck, and please do let us know how things are going.
Gayle, age 46
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*)