Possible Ehlers-Danlos Syndrome with craniocervical instability
I’m sending my scans into the Rochester neurosurgery department with some papers regarding symptoms, measurements, etc. I guess I’m just trying to gauge my chances for being taken seriously with this. I’ve been seen by 25+ physicians for the same symptoms over 8 years to no avail. I’ve included the pictures shown here as well as others in the package. Symptoms: loss of balance and coordination, tinnitus, dysphagia, fatigue, formication, constipation and bloating, tremor in both hands, cold hands and feet, slurred speech, 82% oxygen via sleep apnea precursor test. I hope they don’t get upset as I’ve added some pictures of diagnostic procedures for measuring skull angles. I just can’t help myself after more or less being dismissed for 8 years. I took the measurements with the image with the red lines. Via the report from Barcelona neurosurgeon Vicenç Gilete the measurements are close. His measurements were 129 degrees neutral CXA (which is pathological) and Grabb-Oakes at 9.4mm which is also pathological.