Chiari malformation?

Question

Does anyone here have this condition? If so would you mind telling me your symptoms leading to diagnosis? Thank you.

Answer

My daughter has type one. She was misdiagnosed in the beginning because her neurologist and doctor refused to give her an MRI. She would have headaches so bad she’d hit herself and scream... obviously this was before she could talk. She had the most pain in the back of her neck and she had seizures as well. She also has two syrinx. She had surgery August of last year and is doing great now. We are still waiting for the syrinx to go away as they can cause major problems if they continue growing.

Answer

I have scoliosis which led to them finding my (type 1) chiari. The left side of my body has reduced sensation due to nerve damage caused by the excess cs fluid in my spine and deformation/curvature in my neck and spine. I had no gag reflex which has since come back after my surgery. I was having a lot of headaches around the time it was discovered. I was pretty young so I didn't really understand what was happening with my body a lot so I'm not sure if there was anything else or if we caught it at the right time

Answer

Chronic migraines

Chiari malformation?

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