Looking for advice new diagnosis

Welcome Greetings and Introductions
1

Hi Everyone!

I was diagnosed with probable Chiari I Malformation, but there is "normal CSF flow" so is that still considered Chiari, and could my symptoms still be from the herniation of my cerebellar tonsils (which are 6mm). I've had a long battle with intermittent lightheadedness and syncope for the past 3 years and finally gave up after workups always turned up negative. Now that I'm thinking of it, I think as a child I had some trouble with it too, because I remember my cardiologist (whole other story) telling me to try to "drink a lot of water and eat a lot of salt" thinking I was hypovolemic. I started having what I now think are classic Chiari headaches, starting at the back of my head and creeping up a bit in 2012, which were exacerbated by a post LP headache after being ruled out for meningitis in 2014 -- I work in health care and was exposed to a patient who had + meningitis and I had developed neck pain, headache, and fever. NOTHING and I mean NOTHING helped that post LP headache -- the blood patch failed, as did every pain medicine and alternative therapies known to man (reglan/benadryl/toradol cocktail, dilaudid, and even a trial of depakote). I was miserable. Since then, I have had headaches constantly. I'm just concerned that A. these symptoms may not be from the Chiari because there is a normal flow on MR and B. that even if they are, nothing can be done because the flow is normal.

I guess what I'm confused about is with normal flow, is this even Chiari? From my own healthcare point of view, I'm curious to know what actually causes the pain -- the herniation or the obstruction? Does anyone know?

Thanks in advance

Anthony

2

Hi,

Before I was decompressed in 2015, my MRI showed what doctors determined normal CF flow. "Headache become worse, balance issues, constantly tired, ringing in ears, bleary vision, ect. When I found a Neurologist who didn't think I was crazy. He did surgery and afterwards he stated "it was a good thing I had the surgery because I was blocked and MRI didn't show the severity. My herniation was about 5mm, which some doctors won't even look at. The "headache you describe sounds very similar to the type I had. (started at back of head and crept up to top of head). I don't know what the normal CF flow is but it sounds like this could be Chiari related.

Angela

3

I have an opinion on this and think that in a laying down position the hernia toon can shift and (well at any time) flow can squeak through.