Caitlin Gordon

First post: 1/25/2017 Latest post: 2/15/2017
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

Surgery Date: February 1, 2017

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.

To interact with Caitlin’s website, sign in or register today.

By registering with CaringBridge, you will join over 300,000 people a day who are supporting friends and family members.

Sign In Or Register
SVG_Icons_Back_To_Top
Top