Hello! I am new on this board - I have a six year old son with congenital scoliosis. His curve is between the lumbar and thoracic portion of his spine. Several of his vertebrae are malformed. We live in the Chicagoland area. Started at Children's Memorial in Chicago where they said his curve was 75-80 degrees, wait and see approach. Did some research and decided to go to Shriners when he was about 1. They said he was about 60 degrees and wait and see. They are saying now that he is 75 degrees (a major jump, 5 degrees in the measurement, occurred in the last year or so when they switched to electronic x-rays and measurement, less than 1 degree change occurred since last year's x-ray). While I understand that over time, a 15 degree change is pretty major, I also know that individual doctors measure curves differently, and a computer may do it even more differently, so his curve may not have changed quite as much as they are saying it has. Or maybe I'm just in denial??

Anyway, we are being told now that our son needs growing rods and they want to do it ASAP (Dec or Jan at the latest). He is very active and seems quite normal to us, except for a slight tip to his shoulders. He's never had any trouble with strength, bladder control, lung capacity, etc. He had a tethered cord released at 7 months old, and his spine no longer follows the curve of his scar from this surgery (it used to) - his spine is actually straighter than the scar now. We were quite shocked to hear that he needs to have surgery so suddenly as they've been telling us all along that his curve is changing very slowly (sometimes not at all, and sometimes even less curved than the last time) and that surgery was far on the horizon. The doctors (ortho, neuro, uro, etc, always comment on how great he's doing) We did expect surgery eventually, but just not RIGHT NOW. Our son is starting kindergarten next week, and we are expecting our third child in late October. It is difficult to face the idea that we're supposed to have this poor child go through major, life changing surgery in a few months along with all the stress of these other life changes. I'm finding the timing of all of this to be awful!

We are obviously going to seek some other opinions on this, especially because we have been given no choice beyond immediate growing rods and I know there are many other possible options out there. And perhaps another doctor will be willing to wait just a little longer so that I'm not nursing a two month old baby who is unable to visit in the hospital while at the same time my six year old is undergoing major surgery and hospitalization.

So I suppose my question is, where do we go for additional surgery opinions? We called Philadelphia Shriners immediately and got an appointment to see the head of their department early next month. We have family in Philly, and I've read good things about thier surgery program there, so this this seemed like a good option. Where else should we go? Any suggestions? I've read St Louis Shriners does some different types of treatments, though I'm not sure the halo & extension approach appeals to me. We are not opposed to traveling, but I'd rather not trek all over the nation while 8 months pregnant trying to figure all this out. Ugh.

Thank you for any advice/help you can give me!

Lisa