Hello
I was told by one doctor in 2020 I needed a T12 to the sacrum fusion. I consulted 4 other doctors who had different opinions. I ended up with an L4-S1 fusion immediately as I was having severe foot drop. A year later I had a minimally invasive decompression surgery on T12/L1 that helped somewhat. 2 weeks ago I had a decompression at L3/L4. The disc at L2/3 has a bulge. I'm 58 and as active as possible so odds are good I will have the whole lumbar fused. I have 12 degree scoliosis that apparently doesn't concert the doctors at all. Your case is obviously much different. I have read where many doctors prefer going up to T10 when fusing the lumbar. I have a friend who has been fused T2 to the sacrum. He is 80 yrs old. He is now in a wheelchair because he broke both his hips. He was doing ok with a walker before falling. I would cross post this in the scoliosis group as there will be more people likely to have had a fusion this long. Lastly, if possible I would get at least 4 opinions(Including Mayo) on such a complex case as yours. I'm sorry you're having these problems.