Hi I’m a 62 yr old female diagnosed 17 + yrs ago with total empty sella syndrome, discovered only because I had bad vision problems and what I called ice pick headaches. Later I went to a specialist in ESS and I asked my Dr if ESS was causing my face and neck swell at night so bad you cant see my eyeballs and my chin is now laying on my chest late at night or when I am extremely tired and she said ESS had nothing to do with it. She was blunt..rude and barely looked at me. I walked away so discouraged as I was hiding in my home…tired of the stares from others in public, still this way today. Over the past several years I have discovered little “rivers”..snake like worms on my forehead coming from top to bottom…and I cant shake the idea of Cerebral leakage causing my swelling. Mean while I have headaches, memory, thinking problems and very bad vision problems when Im swollen. My vision even now without swelling is bad…it will be ok then I will have trouble reading this as I am right now. It was 20 yrs ago in a bad car accident that gave me whiplash, a concussion and several bone chips that floated around for yrs in the top of my spine (neck) , I lived on codeine for 3 yrs before my dr took me off it, Him saying they had all been absorbed. Could this have caused the ESS? And now that its total ESS can there be Cerebral fluid leaking down into my face and neck ? Any Ideas out there?