The first diagnosis
I can't remember what it feels like to be normal, but I know I once was. But starting in junior high, I often had headaches and nausea, along with a general feeling of "being sick", or "not quite right". These were very vague and were always assumed to be psychological in nature. I mean, who's sick ALL the time? So I tried to ignore it for a very long time, but I gradually started to feel worse.
In March of 2002, I had a typical eye doctor appointment. She noticed that I'd had persistent swelling of the optic nerve, also known as papilledema. So, being a very insightful doctor, and compassionate person, Dr. Kim Curnyn ordered a brain MRI to be done, mainly to rule out a tumor. Well, it turned out that I had a Chiari 1 Malformation. This means that my posterior fossa (the back of my skull) formed too small, so my cerebellum was squished. Over the years, the pressure forced the bottom of my cerebellum down through the foramen magnum. This blocked off the flow of spinal fluid to and from my brain. The herniation of my cerebellar tonsils was large (almost 2 cm), so it was recommended that I have a posterior fossa decompression surgery. Although, it's important to note that further research shows that herniation length is not a good indicator of the severity of the condition, and should not be the only diagnostic tool. There is NO cure for chiari, but this operation was the only thing that could help me to feel better, so that's what we did. Chiari is relatively common, but it is still a "new' diagnosis, which came around at the advent of the MRI.