Exactly nine and a half weeks ago my life was disrupted in a way I never thought possible by learning I have a genetic condition, one that can be life threatening without surgery but that is resolved with a life threatening surgery. No, the irony is not lost on me. How I came about this knowledge and the reason I am able to be here to type this today, is all thanks to my right arm…plus a few doctors.
On September 1, I was studying in my dorm when all of a sudden I had sharp back and chest pain, I couldn’t breathe, and my right arm went numb and was turning blue. While I was WebMD’ing myself into a heart attack, a friend came by my room, noticed I wasn’t doing well, and offered to drive me to an urgent care center. We went to the doctors and then the emergency room, but after an EKG, X-ray, and ultrasound they had no idea what was wrong. I live close to school, so my dad came and got me, then took me to the emergency room. I arrived at 4:30am on Tuesday, and left at 7:30am. The doctors there still had no idea why my arm was blue, cold to the touch, swelling, and numb, so they referred me to a vascular surgeon that day at 11:30. The vascular surgeon scheduled me an MRI for 1:30pm that day, and after reviewing it and conferring with other doctors, he sent me to a neurosurgeon on Thursday, September 4. By noon on Thursday, I was scheduling my brain surgery.
I have a Chiari 1 Malformation. This means my skull is too small for my brain, so my brain stem extends past my skull by 15mm. Had the malformation been under 7mm, I wouldn’t have had to have surgery. However, because my brain stem went so far past my skull it made it impossible for my spinal cord fluid to flow from my spine to my brain, which caused a build up of it in the middle of my spine. When this occurs, it is called a Syrinx. A Chiari Malformation is rare, but a Syrnix is even more rare. Fun stuff, huh?
I had my surgery on Wednesday, September 10 at 9am. The surgery lasted three hours, and it consisted of removing a graft of bone at the top of my skull, then removing the bottom section of my skull at the base of my neck, shaving down the C1 and C2 vertebrae in my spine, then cutting around the membrane of my brain stem. (P.S. when having major surgery, NEVER Google the surgery beforehand, this is an extremely bad idea. Trust me.) By the end of the surgery I had a lot less bone and hair, and had gained 18 staples and 16 stitches. Both of which, unfortunately, made small children cry.
I was in the hospital for three days, and then home for four days before I started experiencing an incredible amount of pain and debilitating migraines. This pain went on for four more days until on September 20 I was readmitted to the hospital for Chemical Meningitis. Because the spinal fluid was finally able to go to my head, it collected in my skull and pushed my brain to the side. The hospital kept me fully sedated for four days until it miraculously went away. I was released from the hospital again on the 24th.
Since then, I have been home from college recovering. Now I am finally able to drive, I haven’t had pain medications since October 19, and have learned how to strategically hide my lack of hair (thanks, Pinterest). It’s surprisingly great. I’ve learned a lot, plus without the surgery, the doctors told me I would have been either dead or quadriplegic by Christmas, so I am very blessed to be alive and moving right now. *My right arm is working again, thank you for asking.
I’ve learned an incredible amount from this experience and gained an entire new perspective on life, but a lot of my behavior from before the surgery–that I was less than proud of–is starting to return. So I’m starting this blog and leaving CaringBridge to remind myself what I’ve learned and to keep me accountable to maintaing good habits. It is also my hope that what I’ve learned and what I’m doing can help you or someone you know in some way, shape, or form.
I’m also tired of watching Netflix.