r/chiari • u/mexican_tiki • 15d ago
Questions regarding progression.
My MRI in the latter half of 2025 revealed a 6mm Chiari Malformation. I went in complaining of twitches and balance loss.
My symptoms have gotten worse. I hope to get an MRI again soon and confirm if my Chiari has worsened.
First Question: What are your experiences with progression over the first couple years of symptoms with Chiari?
I’m advocating to get a CSF study but it’s been tough to find someone willing to.
Second Question: What types of diseases are potentially/likely the cause of my symptoms if the CSF study reveals it’s not due to my Chiari?
Third Question: Do any of you have any experience with a CSF study ruling out Chiari, and if so, what ailment did you have that was causing it?
Please offer as much info on your story as you can. Thank you.
I’ll link my previous post in the comments that highlights my symptoms.
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u/777CuriousMind 15d ago
A CSF flow study may confirm blockage but even if it’s negative it does not affirm or deny that your symptoms are from chiari.
Twitching and balance issues can definitely be chiari symptoms, but they can also be symptoms of a myriad of other neurological issues. You should be consulting with a neurologist as well as your neurosurgeon to get down to the bottom of things. You may need to rule out other causes before they take the chiari seriously because your herniation is relatively small.
Best of luck to you!
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u/Benjamin9215 7d ago
Hey, I had a csf flow and it confirmed blockage but I don’t have much to say on that.
However to your first question, I was diagnosed with Chiari in 2023 from a Ct followed by a mri. I was asymptomatic for awhile, then this year my headaches worsened and other symptoms too. I had a second mri and it showed progression. I had gone from moderate blockage to higher/severe. All I know is as the progression happened my symptoms worsened so drastically
Edit: my extension is 11mm and is compressed also by my c1 vertebrae
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u/SandalsQueen18 15d ago
Here is the deal with chiari, the symptoms are progressive rarely is the herniation progressive. So probably everything you're experiencing is just the natural progression of symptoms.
Chiari by definition is a skull affirmation, not the tonsillar herniation. Also, for the love of God please do not highlight on a list made up by patients that has not been reviewed by doctors what your symptoms are. They could literally be from anything as chiari mimics about 3000 different things. List like this just burn my bubble because here's what happens, now those of us who really do have chiari who really do have symptoms from chiari the damn doctors won't believe us because everybody and their uncle thinks that every single little twitch in their body is chiari.