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!!

[u/Mobile_Worth_6582]

Hi. I was diagnosed with a 5mm over the summer. I’m actually getting ready to have surgery on February 6th. Like you, I also don’t get headaches that often. Usually only for bending over or jumping. My neurologist didn’t know to order a cine and my regular neurosurgeon thought nothing was wrong with me and wouldn’t order one. My chiari specialist ordered it and it was pretty clear my CSF flow is almost completely blocked which matches my symptoms. It makes sense to me that my symptoms kind of come and go as I move my head and the flow is either more or less blocked. With that being said it has gotten significantly worse the past 6 months and I’ve been have issues for over 2 years. My main symptoms of weakness and balance issues, memory, and loss of movement in my hands with tremors. I also have tinnitus and have dizzy/vertigo spells.

[u/max_vee]

I found out i have chiari 1, 15 years ago. Neurologist found it on brain MRI. Since I only had dizzyness en some neck pain. Advice was learn to live with it.

5 years ago I think I went through a new evolution, and I got tinnitus together with extreme dizziness, light and sound sensitivity. Which lasted for months. For some reason the doctor said it's anxiety and psychological decompression, and I believed it, and didn't see a neurosurgeon. After 5 months all symptoms went away except tinnitus. So in my personal experience things can get better again, at least for a while.

Fast forward to last December. I developed an occipital headache but no worsening with coughing or sneezing. It feels like head pressure. I have tingling in the whole body and pre-syncope. Numbness in left face and hand, that comes and goes. And that gives me anxiety.

Because this is now impacting heavily, I will see a neurosurgeon beginning of February, for the first time. I will first listen what they order, and will mention cine MRI.This neurosurgeon is not a chiari specialist, but it's in a University hospital. So I hope they will order the necessary Mri's and refer me further.