Hi there, I too have Tarlov Cysts. Mine are along my entire spine, but are currently worst in the lumbar/sacral region, which is apparently common. Perineural cysts were identified on my MRI's for years, but none of my doctors were familiar with this disorder and ignored my questions . Now, in addition to chronic migraines, etc., I'm having difficulty walking or standing for more than a few minutes. I am still trying to find help for this, and am also trying to get genetic testing. Many people with TCs also have Ehlers-Danlos Disease, and since I meet many of the criteria, I am hoping that having a diagnosis might help me to get help.
I am in Orange County, CA and am desperate for any leads. Thank you for including me in this group and conversation.