(copying and pasting the same as I wrote on another forum, since I didn't get a reply there)
I'm feeling at a bit of a loss at the moment. I had surgery on my spine when I was 16 (I will be 27 next month). The surgeon diagnosed me with Stickler's syndrome, and stated that had caused the scoliosis. As soon as I woke up from the operation, I was complaining of agonising nerve pain in my legs, which fortunately improved somewhat with ketamine (I couldn't even stand a sheet over it at first). I was Ok-ish for a few years, after a long recovery, though the nerve and back pain never stopped. Then I started to experience nerve pain and pins and needles in my wrists and hands, which gradually spread - everywhere just burns, and goes numb like pins and needles, there are odd, uncomfortable sensations I can't really describe. I also have weakness/clumsiness in my limbs, which has got rather worse also. I have to remember when stepping out of the car, to step onto my stronger right foot, so as not to stumble. The pain clinic I attended suggested it might be Central Pain Syndrome, and the new orthopaedic consultant I went to see told me that the pins in my spine were in the wrong place, all but the top one goes right through my spinal canal. He was obviously reluctant to criticise a fellow surgeon, but did not look very impressed by it (neither did the expert orthopaedic surgeon I've just seen a few days ago). This is not something the surgeon who did the operation had told me - he must have known, I think, surely, but instead told me the nerves had just been 'jangled' and would get better with time. There were supposed to be two surgeons doing my operation, but that day there wasn't, one was away. He'd told me before the operation that I'd be able to live a normal life, no more pain, too, but even the back pain itself didn't stop. The new consultant was also concerned about my spine, and so started monitoring it. The curve is, very noticeably, getting worse, it's started curving again just below the pins.
So, I travelled to see an expert, as my consultant outright told me he just wasn't sure how best to handle it, and wanted another opinion. I've just been told that I need two more operations, the first to remove the pins, which will be risky, and the second to pin the whole spine (which is really what should have been done in the first place). They've noticed an issue with my neck (which hurts like crazy), in addition, which they believe is what is causing the nerve issues in my arms and upper body (which they couldn't figure out the cause of, before). If I don't have it done, I'll just curve right over, basically, though he thinks I'd retain some mobility and be able to walk still (though not with ease, obviously). That might actually be better than it going wrong (again), obviously it's risky considering where the pins are. They can't pin the rest of my spine without removing them, because they'd end up moving as my spine was pinned into a new position, which would be very dangerous. The nerve damage will be permanent, regardless, at this point the damage is done (if the first surgeon had just been honest, I could have sought correction earlier), but should stop getting worse, as far as my lower body goes at least. I'm not sure what they'll need to do with my neck yet, if they can do anything.
It just took me so long to get a proper diagnosis, too (I didn't go into detail on all the different clinics I've been to, and how often I was fobbed off, before I finally got that answer). Finding it all a bit much to take in.