Thank you for doing a story on Chiari I malformation! There are so many of us out here now, correctly diagnosed, because MRI is widely available. It's very sad that it took a famous person to put a face on this painful disorder, and I am so sorry that Rosanne Cash has had to suffer with it. I think she's a wonderful lady. I love her music and her writing.
I truly hope that in the future, Chiari patients will be taken seriously and treated with the respect they deserve. Many are angry and frustrated at the years of misdiagnosis, which can take a terrible toll on one's health and emotions. Finances are another story. The cost of misdiagnosis is higher than people think—you're paying for fibromyalgia care, but you don't actually have fibromyalgia; then you're paying for arthritis care, but you don't actually have arthritis. Sometimes, people take medications that are not helpful and cause side effects.
Primary docs must take their patients' chronic headaches seriously. Being told there's nothing wrong with you can make you feel like you're going crazy. My headaches started when I was 10 years old, and I wasn't correctly diagnosed until I was 40, even though I had been reporting the same symptoms for 30 years straight.
Thank you again for doing this story. I am so grateful.