I know, really you can only understand this if you have been through it yourself, which is why this forum is so great.
I can see after having Bells why this would complicate things for you...but I had a friend with Bells and that completely resolves over time, doesn't it? Did they even confirm it really was Bells, it could have been a really bad Chiari episode.
That's the problem...Drs seem to want to look anywhere but Chiari!!! Their evasion doesn't help us in the least!
Thank you so much for your feedback. That makes me feel so much better. General drs and my neurologist now just want to blame it on my Bells. I was having this long before the Bells. My drs. have tunnel vision. They only see what they want to see. You have to live Chiari to truly understand. I tell people without getting dramatic, walk a mile in my shoes and then, and only then, can you truly understand what I'm going thru. I'm a very layed back, calm person. I take everything most of the time very casual, but this condition is far from casual. It's complex and scary. I'm so glad I found this forum and the wonderful members I share this with. Thanks again. XO trebmal2 (Christine)
I get temple pain ALL THE TIME!!! It's awful and makes it really hard to be able to stand wearing my glasses.. I get facial weakness too and I feel like it is bad enough that my face is sagging but when I look in the mirror if it is there, it's very subtle. As Chiari can compress cranial nerves, I definitely think that is what causes it. I have no gag reflex which is another sign of cranial nerve damage (I definitely had a gag reflex at one time).
*Stormy*
Hi I had the droopy eye too, and lucky for me it was while I was at the drs office and the nurse saw it...I was experiencing facial numbness while it was happening....so it is a chiari thing for sure....she seemed to know all about it.
"selma"