Category Archives: Crainocervical Instability

New AFOs

These boots were made for walkin. When you have Ehlers Danlos Syndrome  and a partial spinal cord injury from Craniocervical Instability you need all sorts of braces to function better. These are my new AFOs (ankle-foot orthoses). My old ones didn’t support my feet enough, so I had to upgrade. The old ones looked like shin guards, so hopefully with these people won’t ask me if I’m a soccer player… 

A smoking gun

This is the smoking gun, so to speak, for what’s going on with me. If you’ve seen me in the last few weeks, you’ll know I’m wearing an impressive neck brace, but it lets me talk. This angle is the angle between my neck and my skull. That should be around 145, and less than 135 needs surgery to fix. The reason being my brainstem (which controls most of the vital functions in my body) is being stretched over that point. This is happening from weak ligaments from the connective tissue disease I have, Ehlers Danlos #ehlersdanlos . The part of my brainstem that’s getting poked let’s me talk, so as soon as I take the neck brace off, the speech problems come back within seconds. The fix is to have my skull fused to the first two vertebrae, and I’m in the process of finding a surgeon. I’m looking into one in Colorado who takes Colorado Medicaid #healthfirstcolorado , but if @sencorygardner and @senbennetco vote to pass a bill that cuts funding to Medicaid, I will lose my insurance and have no way to stabilize my neck. The neck brace isn’t perfect, and despite the improvement I’m still declining slowly. Never mind the fact that Medicaid pays for the IV nutrition that I need to live. Call your senators and urge them to vote no on any bill that cuts funding to Medicaid. The tax cuts will only benefit the uber wealthy too!