- CASE FILE
Headaches for 15+ years, two brain decompressions and spinal fusion with no relief and my Brainstem is in my neck!
ABOUT THIS CASE FILE
I started seeking help 18 years ago for debilitating headaches. Doctors told my mom I was doing it all for attention when medicines were making me more sick and was not helping. In college, a neurologist told me one thing and put me on medicine but wrote down something else in my chart. After having my daughter my headaches got worse and I started having significant memory loss, body numbness, vision problems, tinnitus, and more. I found a neurologist that took me serious and diagnosed me with Chiari Malformation. We had high hopes that the brain decompression surgery would eliminate my pain and symptoms. They worsened and he didn’t understand why. Then come to find out no doctor in my home state knew how to help me or wanted to attempt to. So I started traveling to “specialists”. Found out I have Ehlers-Danlos Syndrome that causes my odontoid bone to press and squish my brainstem. So next step was to revise my brain decompression and fuse bones to take the pressure off my brain. Fast forward and it’s been two years. Headaches and pain and so much more are still there. My doctors who have tried to help me are at a loss on how to help and my brainstem and cerebellar tonsils are both still herniating into my spine despite my skull having more room for them now. A dr also mentioned they suspect my form of EDS to be type 7, also known as Arthrochalasia, however no testing has been ordered. (There are less than 100 cases diagnosed worldwide.) I have had so much imaging with no answers as to why. Meanwhile, it’s getting worse, my fusion never fused and I’m in pain everyday. It effects my ability to work and spend time with my husband and children and I am scared everyday that my brain is going to continue to herniate.