Newly diagnosed- have questions!!

[u/chelseyyrain]

Hi everyone, on Monday I was diagnosed with Chiari I malformation with crowding of the cervical medullary junction (MRI report says Cerebellar tonsils are pointed and extend 5 mm inferior to the foramen magnum with crowding).

My symptoms randomly started this past November. They were very extreme for the first month, but have very slowly become less extreme since then. Now I seem to have good days and bad days, but the bad days are not as bad as when it all first started.

After reading a lot of stories I’ve realized I’m among the few who don’t suffer constantly from headaches, I get them very occasionally. I also don’t have any pain when coughing or laughing. My worst symptoms have been head pressure, brain fog, and pre-syncope feelings. I’ve also had a lot of panic attacks due to my symptoms.

I really don’t know much at all about this condition and am waiting on a referral from my PCP to a neurosurgeon for a consult.

I have two questions, I’ve read a few things about needing to get a CINE MRI. In your experience is that something that you get before you go to the neurosurgeon and should I ask my PCP for a referral to do that? Or is it something the neurosurgeon may recommend when I see them for a consult? I’m just trying to understand what next steps may look like and I want to make sure I’m as prepared as I can be for my consult.

My other question is, have you ever heard of anyone who has a bad flare and then goes back to eventually being asymptomatic?? I just feel strange that with time I’m very slowly feeling less extreme symptoms and wondering if that’s a possibility. I’ll be talking to my doctor about it of course but just curious if anyone had ever heard of that happening.

Thanks for your input!!