I haven't been able to find some answers to these questions, so I figured I would ask the most Chiari-educated group I know :)
Anyone know why some of us have rounded tonsils (me) and some have pointed? I have a couple of theories...maybe pointed tonsils are subject to higher negative pressures in the spinal cord (pulling downward), or possibly pointed tonsils are affected by EDS, since EDS is a connective tissue disorder. I could see where EDS would cause stretching/loosening.
Sarbearon directed me to this website, http://www.positionalcordcompression.com/ , never would have found it otherwise. Looking at the very small portion of my brain MRI which includes spine, I can see where the spinal column is restricted. Have any of you had this type of flexion MRI? Any of you see on your full-spine MRI that there is the possibility of this restriction, and if so, do you still have symptoms after posterior fossa decompression surgery?
Are there any researchers or agencies measuring the size of Chiari brains and skulls to see if they are within norm, smaller skulls than average, or larger brains than average? I know that pseudotumor cerebri (intracranial hypertension) has been associated with Chiari in a "which came first, chicken or the egg" situation. Here's a link for that: http://www.csfinfo.org/node/184. Also, intracranial compliance, super cool new term I just learned, talks about flexibility of the skull and brain and the ability to adjust with higher ICP. It seems there should be an range of optimal skull size for height, optimal brain size to skull ratio, and optimal cerebrospinal fluid measurement range for skull and brain size. Then we'd have a better idea if the problem is too small skull, too large brain (possible pseudotumor cerebri), or too little CSF. And of course, EDS causing brain sag.
CSF also filters out waste products from the brain. Has anyone read about Chiarians being more susceptible to chemicals, immunizations, heavy metals, etc etc? Here's the link for functions of CSF: http://faculty.washington.edu/chudler/vent.html. I know that with blockage at the foramen magnum, it can limit CSF flow, which makes me think there is a possibility that less fluid is moved throughout the day as compared to someone who has no blockage. Anyone know if that is true?
Also, what's the possibility of this group of smart Chiarians working with the top Chiari specialists to create a Chiari protocol? The reoccurring theme I see in our discussions is how long it takes to get diagnosed, lack of diagnosis by radiologists, lack of education by neurologists and neurosurgeons, and the associated diseases and syndromes which need separate specialist management. The 5 mm guideline is old, but it's still being used. Maybe we can get insurance companies involved, the longer it takes to diagnose, the more money they have to spend fixing the problem. Also, there are a lot of things we can do to improve symptoms without surgery, and the insurance company could help educate us in this (like they do with my husband's diabetes).
I just signed the petition, which I think is an excellent idea!
I like to research stuff, so I'd love to hear your ideas too :)