When my daughter was 11, we took her to an orthopedic doctor who said she had a left thoracic curvature of her spine. The doctor said a left curve is usually associated with a spinal tumor or Chiari and that we should return in 6 months for an MRI. My daughter always had headaches in the back of her head, so I didn't want to wait 6 months. Instead, I had my family doctor order the MRI, but he ordered it of the spine only. It showed no tumors, and she hit puberty with only mild curvature progression, and I never heard of or worried about Chiari again.
Fast forward 8 years. My daughter is now 19 and lives in a dorm. The headaches in the back of her head that she has always had are now horrendous. She goes to a doctor near her university and he, over one semester, tries her on every headache medicine in the world, refers her to a neurologist 6 weeks out, and essentially stops returning her calls. She had to withdraw from college for the next semester and moves home. She wakes up with these headaches every single morning. She said she feels "seriously, mom, like my head is full of water and it's about to explode". If I push on the back of her head, she has momentary relief where the headache goes away until I release the pressure. She has been to the ER twice for pain relief while waiting for the neurology appointment, and I take her to our old family doctor hoping to get her some narcotics or something to help. He said "this sounds like normal pressure hydrocephalus or Chiari". I said, "you probably don't remember this, but many years ago we ruled that out with a spine MRI" and he said, "No, she'd need an MRI of her brain".
I am at this point really worried. She has an MRI tonight, but we still have 2 weeks before the neurologist appointment. Do the headaches associated with Chiari stop when pressure is applied and then return when the pressure is removed? Would a typical 11-year-old with a Chiari malformation or syrinx or something have only mild symptoms until she hits young adulthood? Any other things I should look for?