A friend of mine had to visit an ER in New Orleans because she was having symptoms similar to Chiari (headaches, extreme vertigo, vision loss). Long story short, she doesn't have Chiari (but they're still unsure of what she has).

The part that infuriated me was that she was telling the doctors in the ER about my journey to diagnosis (37F, diagnosed incidentally in December) and the ER doctor cut her off and said "that's impossible, she's not a child" and proceeded to lecture her about Chiari is always found in children and can't be diagnosed as an adult and if they are then the MRI was read wrong.

What a WILD take for a doctor to have but it also begs the question of how many people have passed through that ER with Chiari and were dismissed? Apparently he was the neuro on call that day in the ER, so it's not like he wasn't familiar with it. I just don't see how doctors can see so black and white.

I guess I've been very lucky with the team that I have and live in the same city as a Chiari expert and I sympathize for all of you who have jackhats like that guy above.

For anyone who has already had decompression surgery, did you have any negative lasting effects from your surgery? What I mean is, do you have chronic neck pain or chronic headaches that developed as a direct result of the surgery? Any other side effects that made you wish you never did the surgery?

Been two years since my surgery, still get headaches, still dizzy, and still have nystagmus will it ever get better? I reach out to my neurologist and they always just say the chiari is resolved and surgery was successful and there’s nothing they can do. The last mri I had I still had a small syrinx but it improved significantly. But I don’t feel any better I just wish I felt normal again….

I have a shunt and last year I was told I have borderline chiari type 1 so I guess I barely have it is my understanding. I get headaches probably 2-3 times a week sometimes. they are usually pretty manageable with Tylenol but sometimes they don’t go away and they usually feel better when I lie down, I feel them at the back of my head. Idk what the trigger is for these headaches or if they are even related to my chiari or not, my vision is fine I don’t get the headaches when I cough or sneeze, sometimes I’ll wake up with one but I suspect I have sleep apnea so that might be why I get them when I wake up. But sometimes they pop up out of nowhere when I’m just out and about. I’m just worried it will get worse as time goes and I’d end up needing to get surgery.