March To Conquer Chiari

In 2015 the neurologist I was seeing for migraine headaches ordered an MRI of my head.  During my follow up visit the doctor said, "you have slightly low-lying cerebellar tonsils but nothing to be concerned about." I was given various prescriptions to try to relieve the migraine headaches, and when they were particularly severe, received infusion treatments.  Sometime between 2015 - 2016 I randomly began to experience pins and needle sensations in my right hand followed shortly after by loss of feeling, blood circulation would slow to the point of my hands turning blue to bluish-grey. Referred to a vascular specialist, tests showed there was an impingement.  Another MRI report referred to, "cerebellar ectopia" but I was again told I would be treated for the symptoms.  Within months the pins and needles progressed into my face and scalp, a feeling I can best describe as millions of ants crawling under my skin.  The neurologist simply called it trigeminal neuralgia, and began treating me with trigger point injections.  The migraine headaches persisted with pain beginning at the base of my head that felt like an ice pick was being repeatedly driven into me radiating into my eye. To this the neurologist added, "you're experiencing occipital neuralgia."  Trigger point injections no longer sufficient to control the pain, the doctor suggested Botox injections. I've continued both injections and prescription medications without relief.  Since 2016, I've experienced vision disturbances, insomnia, trouble concentrating, difficulty with word recall, random choking, and even partial seizures. I share my story with you because it is the story of many, many like me that endure the symptoms of Chiari Malformation.  Funding is needed for research. Research that could help people like me receive treatment to avoid years of unnecessary pain, and frustration.