- CASE FILE
My life is a daily war with my own body. Once a vibrant career woman, I am now permanently disabled. I seek some quality to my living.
ABOUT THIS CASE FILE
I am disabled by numerous co-morbid conditions: Chiari Malformation, Ehlers-Danlos Syndrome, Secondary Addison's, POTS, Esophageal Dysmotility, Mast Cell Activation, Achalasia, Intracranial Hypertension, and other several others. I have undergone five brain surgeries, including a Posterior-Fossa Decompression, two laminectomies, and the implant of three brain stents to address intracranial hypertension and cerebral spinal fluid leaks. My body no longer produces cortisol, leaving me dependent on twice daily hydro-cortisol doses and causing me to sleep sometimes 20 hours a day. When I am awake, I am in constant pain; my head pain spikes when spinal fluid builds up and does not drain properly, my joints ache from dislocations caused by Ehlers-Danlos, and my stomach is wracked in nausea. My last surgery, a POEM procedure to address Achalasia, Esophageal Dysmotility, and Jackhammer Esophagus, has left me able to take in only small amounts of yogurt and Ensure, and I have lost 35 pounds in the last 10 months. I cannot tell you how many doctors have told me this: "Your case is beyond my ability to help." I don't want to give up. I neither want nor expect any miracles, but I would like to recover some quality to my living. I need help. Will you help me? At least try?