I was actually born with spina bifida and they didn’t find it until 1999 and I was 28 yrs old. The mylemeningocele had grown down my spine from L3 to S1 and hip to hip and not across. I have had many procedures many injections and 3 surgeries for removal of mylemeningocele. The first mri recommended a pet scan and said possible arachnoiditis then. My nerves have just started to clump and I am trying my hardest to figure this out because my docs haven’t even mentioned it other than the report. I just want to do everything I can to not let this progress and find a doctor who can help me with that.