u/Tricky_Delivery_1530

Hey everyone, I am looking for some insight from fellow Chiari warriors. I am currently dealing with a severe cluster of symptoms and am trying to figure out if my Chiari could be the primary culprit.
I have been dealing with debilitating symptoms for the last two months, including severe positional/upright head pain, constant brain fog, vertigo, balance issues when walking, and noticeable leg weakness. I was recently checked for a spinal CSF leak with a thorough dynamic CT myelogram, but they didn’t find a physical hole or active leak on the live imaging.
I know that Chiari Malformation means the cerebellar tonsils sit lower than normal, and I've read that this can physically crowd the foreman magnum. My questions for this group are:
Can Chiari mess up or block the normal flow of cerebrospinal fluid (CSF)?
Can that disruption in fluid dynamics directly cause severe vertigo, off-balance coordination, and leg weakness?
Has anyone else had an inconclusive or negative CSF leak workup, only to find out that their downward brain sagging/positional symptoms were driven entirely by their Chiari?
I am trying to map out my next steps and figure out what other imaging or specialized testing I should look into. Any advice, personal experiences, or guidance would be greatly appreciated!

Hey everyone, I am writing this from bed and just need some reassurance or advice from people who have been through this because I am completely spiraling right now.
I have been strictly bedbound for the last eight weeks. Every time I try to get upright, I get a blinding 10/10 orthostatic headache, severe brain fog, leg weakness, and a terrifying off-balance, floating feeling that comes and goes. My brain MRI showed some low-pressure signs like subtle sagging, and a previous spinal MRU found a suspicious fluid collection near my shoulder blades.
Because of that, I finally got in with a top spinal leak specialist today for a dynamic CT myelogram. He was incredibly thorough, but the live imaging didn't catch an active leak. It came back inconclusive. He went ahead and performed a high-volume blood patch over that shoulder blade neighborhood anyway, and told me we have to wait two weeks to see how my body responds.
Even though he gave me the patch, I feel completely helpless and depressed. It feels like because the live scan didn't show a clear hole, I still don't technically have an official diagnosis typed into my chart. I am terrified that the patch won't work, that doctors are going to stop trying to help me, and that I'm going to be stuck bedbound like this for the rest of my life. I'm a mom and I have a bridal makeup business to run next year, and I just feel like my life is completely over.
Has anyone else had a completely clear or inconclusive CT myelogram but still been cured by a targeted patch? How do you cope with the mental trauma of being treated without a textbook "official" diagnosis written down? Any advice or success stories would mean the world to me right now.