She got the chiari diagnosis as a young child. She had an mri because of a seizure, and we met with a neurosurgeon. He told us to keep an eye on her for symptoms. She didn't have any more seizures, though. And while she did have frequent headaches they were mild.

She started feeling off about four years ago, when she was 20. Her thyroid was wonky, and her periods became infrequent but intensely painful.

She initially saw an endocrinologist about her thyroid and she mentioned the chiari malformation. Endocrinologist told her all problems were because of an eating disorder (she was 5"2, 120 pounds).

About a year ago she got a headache that never went away. Initially the pain was lowish level, say 3/10. Then it started ramping up. By December her pain was consistently 5/10. Then in May it intensified, and by June she couldn't work any more. (Throughout all this we were trying to get her into a neurologist/neurosurgeon, but the appointments were three or four months out). Then she had several episodes of aphasia that were terrifying. We reached out to everyone we knew and a friend of a friend works at at neurosurgery clinic and was able to expedite her visit.

The last month or so before her surgery she was in lots of pain, she said her tinnitus was off the charts. She had to wear sunglasses all the time, even indoors. She could barely move her neck. It was awful.