I put in a request on Monday to get the images of my brain MRIs for my referral to Dr. Oro (which I will be changing soon), and I was able to pick up the disc today. After having to tinker with the program properties, we finally got it working (I have Windows 10, and it was made for Windows 8).
Anyway, I found good images of my "cerebellar tonsillar ectopia" to send to the Wisconsin Chiari Center, hoping they will accept me as a patient. After noticing how crowded the area in my foramen magnum is, I can't seem to grasp why they don't call it what it is... Chiari Malformation!
I get that a lot of doctors still go strictly by measurements, or just ignore the fact that it's so crowded in there, but still. Please, look at these images and tell me this isn't Chiari!
The first one is from May of last year, the second one is from August of this year.
To me it looks similar to my mri where it is called Chiari 1, If i remember correctly, my tonsils are reaching C1. But then again- I'm not a radiologist. Either way, doctors fimiliar with Chiari know, the herniation size doesn't dictate how symptomatic we should be.
It doesn’t help me any that I deal with primarily military providers, and Chiari is not a condition that pops up on their radar very often, not even with the Neurology departments.
It looks very similar to my MRI result pictures i received back two weeks ago, these results confirmed the doctors worries that i did have Chiari malformation, however I'm not a doctor! But i have been told that the measurement the brain has slipped does not correlate with symptoms. I have quite sever symptoms some days and none on other days, and they say mine has slipped between 5mm and 7mm. hope this has been some kind if help x
With military doctors if they are anything like they were 20+ years ago you have to push push push. The pix do show the slippage but as everyone says that does not mean the symptoms are better or worse. I had a guy that was before me that barely had a 2mm slip and he had symptoms almost as bad as mine. You will find a lot of civilian neurology departments that do not know what Chiari is. Push is the best I can tell you don't let them send you home saying it will get better because if you are having symptoms they most likely will not!!
liaspyre31 said:
It doesn't help me any that I deal with primarily military providers, and Chiari is not a condition that pops up on their radar very often, not even with the Neurology departments.
