- CASE FILE
I was diagnosed with a rare brain illnesses called Idiopathic intracranial hypertension also known as PTC
ABOUT THIS CASE FILE
Hello! I am Elise and I just turned 21 july of 2019! Exciting right?? Not really. When I was 14 I was diagnosed with a non curable illness called Idiopathic intracranial hypertension! Most people with this illness are treated with medication. Sadly I'm not one of those people. I am considered by neurosurgeons in Texas, California, Oregon, Nevada, Idaho, Utah, Ohio, ect to be one of the worst cases in the world! I was diagnosed at 14 weighing 115 pounds. I was on shakes to help gain weight. So I didn't fit that profile of being overweight, 20-40 and child bearing years.. I have seen about 8-10 neurosurgeons I have had 12 brain surgeries and 4 spine surgery's. I have two shunts one from brain to stomach and one from spine to stomach.. I had my first surgery October 31 of 2015.. So if you do the math I have surgery about every 3 months.. I have bounced from neurosurgeon to neurosurgeon.. After a few surgery's the doctor either get scared cause something happened during surgery and leave me or they will only do so many before they tell me theirs nothing more they can do and they think I should be put on hospice. I am 21 fighting for my life, hoping and praying I can just find some cure or someone to help me! I have had a stroke, TBI, sepsis, septic shock, Hepatic Encephalopathy, comas, brain bleed, ect! I am looking at having another surgery but we don't know where! Your brain has 4 ventricles and 3 of my 4 are broken. We cant put a new shunt in the 4th one because if the last ventricle stops working I will go into a coma and or possibly death. I'm not sure the next steps! I am highly allergic to all the medications to help me a little and I need two working shunts.. I need a cure! The people like me need a cure! So that is my story! I am 21 year old daughter, little sister, big sister, girlfriend, make a wish kid, and a fighter!