My blogs

Carolyn's Sick Journey

About me

Location	Wisconsin
Introduction	I am a 28 year old woman. I have Chiari, which means that the back of my skull was formed too small. I have Ehlers Danlos Syndrome, which is a connective tissue disorder. When people with Chiari also have EDS, the skull-spine joint becomes unstable. This instability causes POTS, which is an autonomic dysfunction. My autonomic nervous system malfunctions, causing problems with all involuntary functions of the body. My symptoms include a constant headache, nausea, fatigue, tachycardia, shortness of breath, and fainting. I’ve had four major operations. In 2002, I had parts of my skull and vertebra removed in a decompression surgery. In 2003, I had a cranio-cervical fusion. Titanium rods were bolted to my skull and screwed into my top 4 vertebrae. This lifted my skull, extending my cervical spine. In 2008, I had a de-tethering surgery of an occult tethered spinal cord. In 2010, I had a fusion revision to lift my skull higher on my spine. These conditions are widely under-recognized, misdiagnosed, and mistreated in the medical field. I have sought treatment at The Chiari Institute in New York.

Location

Wisconsin

Introduction

I am a 28 year old woman. I have Chiari, which means that the back of my skull was formed too small. I have Ehlers Danlos Syndrome, which is a connective tissue disorder. When people with Chiari also have EDS, the skull-spine joint becomes unstable. This instability causes POTS, which is an autonomic dysfunction. My autonomic nervous system malfunctions, causing problems with all involuntary functions of the body. My symptoms include a constant headache, nausea, fatigue, tachycardia, shortness of breath, and fainting. I’ve had four major operations. In 2002, I had parts of my skull and vertebra removed in a decompression surgery. In 2003, I had a cranio-cervical fusion. Titanium rods were bolted to my skull and screwed into my top 4 vertebrae. This lifted my skull, extending my cervical spine. In 2008, I had a de-tethering surgery of an occult tethered spinal cord. In 2010, I had a fusion revision to lift my skull higher on my spine. These conditions are widely under-recognized, misdiagnosed, and mistreated in the medical field. I have sought treatment at The Chiari Institute in New York.