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I am on a path to get an Ehlers Danlos diagnosis (hypermobile type 3) and have been thinking that I might have chiari malformation as well. I have had an mri and they said I did not have chiari but I do have a retroflexed odontoid and a possible odontoid pannus. I have read that with a retroflexion sometimes an upright mri is better to see the chiari malformation. There aren’t any available where I live so I was wondering if I should try to go to a provider that has one. I have terrible neck pain…..headaches and pain in the occipital region as well as the back of my eyes. I feel pressure like my eyes are going to pop out. I have numbness and pain down my shoudlers and get a creepy crawly feeling on my scalp. I also have pain that sometimes radiates into my armpits with the arm and shoulder pain. Lots of crunching when I move my neck and crunching when I move my shoulders.
Hi Shannon, this is not Chiari, but your symptoms sound like many of us who have ”
Chiari Zero” — symptoms of Chiari due to pressure on the brain stem from high intracranial pressure. This is not uncommon, especially when the back of the skull is somewhat small, crowding the brain stem area. Your doctor may want to try Diamox on you. Hopefully, you’ll have the dramatic response my kids and I did (as well as others, of course). We were able to avoid neck fusions, Chiari surgery and brain shunts. Today, we don’t require Diamox. Fingers crossed for you!
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