I was visiting some friends on the east coast for New Years, when I had my AVM bleed. It was very dramatic, partially because I was with my friends, and partially because I was so far from home (I live in California, on the other end of the country).I was in a room doing Pilates with some friends. I was wearing winter clothes and got a little overheated. I felt a little faint (not unusual for me – I’]m a fainter), so I tried to put my head down. Then I realized I was having trouble swallowing. I imagined myself choking on my saliva, much like a drunk person might choke on their vomit. I asked a friend for a drool rag. She also brought back another friend who is a doctor. I guess she figured out I was having a stroke. Next three things happened quickly. Someone got my husband, someone called 911, and someone got all the kids upstairs., playing a musical game with them, o they would not see or hear anything scary. The ambulance came and they asked my husband which hospital to go to, and he said the better one, which turned out to be further away. They determined that I’d had a cerebral hemorrhage from an AVM located in my brain stem. Once there, my husband called my parents and his, along with his siblings. who had medical training, which turned out to be crucial. His brother had a contact at the hospital who made sure I was given the best care. Even so, I was not expected to live. My husband and kids were devastated. They put me into a drug-induced coma while they worked in me. They put a shunt in me to relive pressure as my brain continued to swell, feeding tube, and a traich. They ran some tests on me, to look more closely at the source of the bleed. The medicine that was given to me for the coma(propanol) caused hallucinations. I do not know when I woke up, although I’m told it was as soon as they stopped the medicine. I had very vivid dreams and waking hallucinations for a while later. Meanwhile, the grandparents took the kids home. I went to Spaulding in Boston for my rehab. My husband checked with 3 different doctors to see if it was safe to fly home. We went first-class just in case.
Unfortunately for me, flying home wasn’t my happy ending, as I had several more adventures.
I did my rehab at Spaulding in Boston – a really top-notch place. Then was the big plane ride home. I stayed at Los Altos subacute (a SNF, pronounced “sniff”) while my husband got the house ready to handle my new disabilities. My husband visited me every day. After I got home, I had surgery at Stanford to remove my AVM, with Dr. Steinberg performing the surgery. While successful, it reduced or eliminated all the gains I had made. So I had to relearn many things again, especially eating. I then went to Santa Clara for rehab. I had a minor complication causing fluid to build up, so I had another surgery to put in a shunt to alleviate the fluid. Something went wrong, The doctor thought it might have been an allergic reaction to the anesthesia. Or it could be that the shunt was misplaced. I ended up in the hospital longer than anticipated, then I went to CBMP for rehab. I was so excited to leave rehab by then I started quoting Rev. Martin Luther King “Free at last. Free at last. Thank G-d almighty I’m free at last”. Except that wasn’t the last. It turned out I had an infection, so they had to do emergency brain surgery under sedation only (because it was believed that I was allergic to the general anesthesia at the time). There were some other more minor adventures after that, but I’ve basically been home since.
Living with Brain Injury 