Caitlin Gordon

First post: Jan 25, 2017 Latest post: Feb 15, 2017
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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.  
Ehlers-Danlos syndrome- hypermobility type
Craniocervical Instability
Low lying cerebellar tonsils 
Mast Cell Activation Disorder
Postural Orthostatic Tachycardia

Surgery Date: February 1, 2017

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