Rachel CCI
Health Advocate | Raising Awareness for CCI and Related Neurological Conditions TBI & CCI Survivor
I’m Rachel, and I’m on a mission to raise awareness about a condition that progressively dismantled my health and nearly took my life.
In 2023, I was diagnosed with Cranial-Cervical and Atlantoaxial Instability (CCI/AAI), which led to a dislocation at my cranial-cervical junction. Prior to this, I spent 14 years using every tool available to support my health, yet my neurological symptoms continued to worsen. By the time I was diagnosed, I was bedbound, experiencing dysautonomia, dystonia, aphasia, coordination issues, intermittent vision loss, and episodes where I became “locked in”—unable to move, speak, or swallow. These symptoms were caused by mechanical compression of my brainstem and spinal cord, disrupting blood flow and cerebrospinal fluid circulation.
My condition stemmed from a rear-end collision 14 years before my diagnosis. At the time, I was diagnosed with a traumatic brain injury (TBI), vestibular damage, and some vascular issues, but the most serious pathology remained undetected. Despite seeing many capable specialists, as time passed, fewer considered the relationship between a high-velocity collision and my worsening symptoms.
By incredible luck, in 2023, I was referred to a physician who recognized my clinical findings, conducted specialized imaging, and helped me access treatment. Soon after, I traveled for urgent, high-risk neurosurgery—Atlantoaxial Dislocation Fixation—a complex procedure performed by few neurosurgeons worldwide.
This surgery was a miracle for me. It restored my ability to walk, speak, and regain aspects of my independence. While neurological recovery is a long road, I’m incredibly fortunate that this operation was so successful, giving me the opportunity to heal in ways that weren’t thought possible before.
What stands out to me today is that, despite the severity of my CCI, AAI, and eventual dislocation, my condition went undiagnosed for years. I’m not alone in this, and my goal in raising awareness is to help others access a diagnosis sooner. For some, earlier intervention can provide the knowledge and tools to manage mechanical compression and improve function with less invasive options. And for those who require surgery, timely diagnosis could prevent further damage, giving them a better chance at a positive surgical outcome and a fuller life.
