i found out i had it this year. too late for me. i had a very physical job for 5 years. now the docs say i have the spine of a 93 year old and i am only 39. since my neck fusion i have gotten worse. i wish i had not had it. my life is very limited and i lost my job in october. i now live with family which for me is very bad. 2006 was the worst year of my life. i dont celebrate new years because it does not get better. if anyone asked me now i would say dont have the neck fusion done. i haven't been able to have another mri but i suspect my spine is more fused than ever. i was in and out of fords hospital in detroit as a kid and they never caught it so i didnt get treatment, not even bracing. i would not suggest anyone go there unless its gotten better. i called the university of michigan hospital and the syndrome isnt even in their database? it scares me to be here because every doc i see has to look it up. the one i got stuck seeing was scared to touch me. he said i was the most disabled he had ever seen. i just wanted to work and make my own way in life