Hello, I was diagnosed this year a few months ago. My brain has dropped 9 mm. I started having symptoms about 5 years ago ( I was 35). With time my symptoms have gotten worse. Every now and then I read stories about people having serious problems, disorders, or disease that might be related to Chiari malformation. Can someone list things I should have my neurologist rule out. I don’t want to have the brain surgery only to still have symptoms after surgery. If anyone can think of anything I would greatly appreciate it. Thank you for your time and any and all feedback.
Hello Taskarnes, sorry to read about all of the symptoms you are having. The number 1 co-morbid relationship to Chiari would be Ehlers Danlos Syndrome or another connective tissue disorder. I would encourage you to talk to your dr. about this, there are several different types, some can be diagnosed through blood tests, other types cannot. Please do let us know how you are doing. Huey with Chiari and Ehlers Danlos (EDS)
I would have the doctors determine if you might have a cerebrospinal fluid leak. I had Chiari surgery 12 years ago and had recurrence of headaches, imbalance, swallowing difficulties and trigeminal neuralgia in the years post-op. It now turns out that I had a leak and my brain was “dry” and the cerebellum slumping due to that. I recently had a fluoroscopic CT scan at Duke (only a few facilities have this technology/expertise) to pinpoint the location of the leak and spinal nerve surgery to fix a bad vein that was being told by the spinal nerve to drain my spinal column. I have just had the first normal MRI in my life post-op…all due to a fixing a leak! Headaches gone, balance returned, swallowing just fine.
The headaches from being hypotensive (low spinal fluid) may mimic those of Chiari. It’s much less invasive to repair a leak than undergo brain surgery…been there done that and still got the headaches!
Good luck to you,
I’ve heard of low CSF pressure being as bad as high CSF pressure when it comes to symptoms, and it does seem a common problem for people after decompression even without a leak.
This sounds a great result, finally someone somewhere has some surgery that addresses a problem and just works Hope things keep going well!