Hi
I am a young 51 yr old from the Uk who is hoping to meet people in the same situation as me, as family and friends find it very difficult to understand.
I am hoping to hear from fellow sufferers of this condition, was diagnosed in Jan 08, after 12-15 years of hell, at least the jigsaw pieces are falling into place the more i find out. I have seen my first neurosurgeon, and now will have a full spinal MRI scan next saturday and then i will be seen by the NS's on May 28th for the rest of their findngs. I was told the large multiple cysts seen in the sacruum were due to a RTA in 1991, were i sustained multiple fractures of my torso, but 7 major one in my pelvis. Also i have multiple cysts sen on my lumbar and t9-t10 .
Surgery is not being suggested as they seem reluctant to operate unless it's the last resort?
Any feedback would be great
Cheers
Christina::