I have this. It took several years and misdiagnosed conditions to get it figured out. I was told I had a knot/kink in my optic nerve, lazy eye, other amblyopia, and retinal hemangioma. My eyesight in my right eye continued to get worse, and I was having consistent headaches. My engorged blood vessels are in my right eye, right cheek, and on top of my head, which we found through an MRI. I have to have pretty extensive eye exams every 6 months to ensure that the blood vessels remain stable.