- CASE FILE
I have chiari malformation, I have tried everything including decompression surgery.
ABOUT THIS CASE FILE
I have chiari malformation. Chiari is something you are born with. In a summary, my brain is too big for my skull. With that being said, it means my brain simply doesn’t fit in my skull so it slowly dips further and further down my spinal cord causing a blockage. Yes that means exactly as it sounds. My brain literally fell out of my head. What that does is it blocks spinal fluid from leaving and entering my brain properly. I ended up with a 9mm blockage and a syrinx only my spine. I have had migraines my whole life but only just found out 2 years ago it was chiari. What happens is when I get migraines my brain literally presses up against my skull because it swells. I’ve had countless MRI’s and it always said “sinus pressure” until one day I had a neurologist actually take the time to look at the scans and clear and a bright blue sky the blockage from my brain was there. My pain is absolutely unbearable with migraines that feel like I am being stabbed in the back of my head, I become dizzy, I get numbness throughout my arms and legs, I vomit, I can’t even go to work most dayS. I have had nerve blocks, nerve medicine, pain medicine, muscle relaxers, shots upon shots, any new medicine that comes out including monthly injections, I’ve been on them. I am so tired of being a test subject for new medicine. Because before it’s even out to the public, I’ve been put on it when it’s only a few weeks new. Finally my last resort the doctors say, decompression surgery. May 13th 2019, that is the day doctor holly gilmer took out a part of my skull to create room for my brain, she cauterized the cerebellar tonsils, put a graft in, and took apart of my c1 spine out. It still isn’t a cure, there is no cure I’m told. It is now October 13th 2019. My brain is still swelling, to the point you can see it bulging in the back of my head now, I can now hear fluid moving around in my head, I cannot lift over 20 lbs with out pain and getting light headed. The pain is so bad I am constantly vomiting, it hurts to fully empty my bladder and I’m told not to push because I could strain my brain, I cannot sneeze, cough, yawn, use the bathroom without pain. I cannot bend over I have to squat, or I will get so dizzy I fall, my memory on the days I have migraines is so bad I forget things with in 2 minutes. I can not touch my head without pain because the swelling is so bad it hurts to touch, I do not sleep because the pain keeps me up, I cannot lay down without a million pillows to prop me up because laying flat is too much weight. My heart rate randomly goes to the 180s and then just drops to the 40s. My blood pressure gets to be in the 170s systolic and 90-120 diastolic. When any change in the biometric pressure happens guess what? I am in pain. I am completely miserable and I am only 23 years old. I have goals and dreams I want to achieve but the pain is making it nearly impossible to do. I just want relief. I am told this is all this is normal and part of the healing process but this amount of pain can not be normal. Please help me