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1/25/2017 Latest post:
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
I'm heading to New York to have Dr. Paolo Bolognese perform a decompression and 0-C2 fusion. That basically means they will cut out a small portion of my skull to reduce the pressure on the brain (ie, the low lying cerebellar tonsils) and then fuse the skull down to the second cervical vertebrae to create stability in my cervical spine. Without this surgery my quality of life will never improve and could potentially continue to deteriorate. I've seen a significant increase of debilitating symptoms in the past 6 months. This will hopefully reduce the constant pain/pressure in my head, daily migraines, hand tremors, tinnitus, and other worsening neurological symptoms caused by craniocervical instability. My craniocervical instability is the result of an underlying connective tissue disorder called Ehlers-Danlos Syndrome hypermobility type. Diagnoses: Ehlers-Danlos syndrome- hypermobility type Fibromyalgia Craniocervical Instability Low lying cerebellar tonsils Mast Cell Activation Disorder Postural Orthostatic Tachycardia