Hi Laurie,
I am so sorry to hear your news, and I can only imagine how upset and worried you must feel. Especially a the 2 yr post-op point, when you were probably hoping to be able to forget all about surgery.
It would definitely seem helpful to clarify the doctor's comments and learn more about his reasoning. I know I would want to delay that type of revision surgery for my child as long as possible unless I knew a really clear reason for it. Seems like one or two other opinions would be benificial. I'm sure you have other pediatric SRS surgeons in your area, and there is also Shriners in Portland.
I have no real advice for you, but I just wanted to lend my support. I hope things will seem better after talking with the doc. I always find more info to be helpful in reducing worry. Please let us know how you are doing.
Take care,
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