Chiari Malformation?
Info: I have hEDS and MCAS.
Anyone else have a Chiari Malformation?
I went to the emergency room this morning for a migraine and found out via CT scan that I have a 5mm Chiari Malformation.
The doctor glazed over telling me about it, all she said was people are born with it, it’s not an emergency, but I will need an MRI follow up on it.
Then I made the mistake of googling it, and kinda freaked myself out. So I’m just looking for some personal experiences with it, and maybe some recommendations for how others manage symptoms.
Right now the only symptoms I have that I am aware of is the back of the head pain that worsens with sudden motion, migraine like headaches, light sensitivity, and I do have occasional swallowing and breathing issues but I don’t know if that’s just the eds.
TIA
Posted Aug 1, 2026, 3:56 AM UTC