Rachel’s Path: CCI and AAI Awareness 

After 14 years of worsening neurological symptoms and countless diagnoses, my most serious condition was never uncovered. In 2023 I was finally diagnosed with Cranialcervical and Atlantoaxial Instability (CCI and AAI), including a posterior AAD (Atlantoaxial dislocation) that required high-risk neurosurgery. 

Like many patients, I spent years bouncing between specialists while my condition continued to worsen yet remained undetected. CCI and AAI can compress the brainstem, spinal cord, and cranial nerves, impacting multiple systems—neurological, cardiovascular, musculoskeletal, and autonomic—causing a wide range of misunderstood symptoms. 

Too often, patients are blamed instead of believed. Through content, interviews, and advocacy, I hope to empower others, support earlier diagnosis, and push for better understanding within the medical system. I’m not a doctor—just a patient who knows what it’s like to be dismissed for too long. We need help. We need hope. We need to talk about CCI.