Craniocervical Instability is structural instability of the craniocervical junction (where your head and neck meet). It can lead to a pathological deformation of the brainstem, upper spinal cord, and cerebellum. It can also occur with something called Chiari Malformation, a herniation of your cerebellum down your spine. It primarily occurs in patients with Ehlers-Danlos Syndrome and other hereditary disorders of connective tissue. For more information about CCI, visit this website http://www.thepainrelieffoundation.com/craniocervical-instability/
I was diagnosed with Chiari Malformation in 2015 through MRI, with EDS in March of this year, and just two weeks ago, with Craniocervical Instability through CT scans. CCI can look different in different people. My personal symptoms include tachycardia and HR Instability, headaches, neck/spinal pain, paresthesias, pressure in the back of my head and behind my ears, vertigo, heat intolerance, periodic difficulty swallowing, tinnitus, balance problems, and two episodes of facial numbness.
While the diagnosis of CCI explains a lot, this is a much more complicated answer than I had hoped for. Treatment is often complicated and surgical depending on prognosis. The first line of treatment is often slapping on a cervical collar to stabilize everything and see if symptoms improve. So if you see me in one of those, this is why. I go July 25th for more extensive imaging, and then have an evaluation with a highly recommended neurosurgeon on July 29th. I’m hoping for more definitive answers on what this new diagnosis means for me.
I’m a little scared. I’m a little frustrated with my body. I’m a little relieved and validated. But mostly I’m holding a posture of openness to get all the information I need and trust that I’m exactly where I’m supposed to be.
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