Re: Very worried!
Hi Steph, welcome to SSO
Fom the date in your username, it sounds as though you are about the same age as I am. I had scoliosis since I was a baby and had my thoracic spine (T1-T12) fused with a Harrington Rod aged 12.
Do you know if you had a single curve or a double curve? If you have a double curve, it is quite common for the unfused lumbar curve to continue to progress if you just have the thoracic one fused. Whatever doctor it was who told you that "no doctor would ever fuse to T12" was talking a lot of rot - surgeons will fuse whichever vertebrae they need to in order to straighten a curve, and plenty of people here are fused at T12 with no problems. In fact, since T12 is pretty much in the middle of your back, it's uncommon to find anyone who has had surgery who doesn't have a fused T12! Those who don't are likely to be the few who have primary lumbar curves with unfused thoracic spines, which doesn't happen often in younger people.
Do you know the degree (size) of your curvatures, both before and after surgery?
I had my thoracic spine fused to fix my upper curve at ten, but they left my lower, lumbar curve untouched for as long as possible in order to allow me to continue to grow (since fused bits of spine can no longer grow). I finally had that curve fused at 18 when it became clear we couldn't leave it unfused for much longer. It sounds as though this is the sort of surgery you should have had a while ago. Scoliosis does predispose us to degenerative changes in the spine due to the uneven loads placed on it, so fusion surgery may help you a lot. In your position I would definitely go for it.
Depression, anger, and social anxiety etc are not symptoms that are specific to scoliosis per se. It is pretty normal that someone with any sort of longterm medical issues and pain would develop these problems though. Again, a lot of members here will relate to how you feel. I hope we can help to support you through this
37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.