Like most 27-year-olds, Erica Chain was busy living her life – working at a startup she loved, doing yoga and running, and hanging out with friends. When she was diagnosed with a brain tumor after fainting in the street, she found herself suddenly grappling with major health decisions and an uncertain future.
Neurosurgeons told her the tumor was inoperable. She opted for a wait-and-see approach, getting annual MRIs instead of having her brain biopsied, a prospect that frightened her. But when a friend found her unresponsive in bed a few weeks later and called 911, Chain was admitted to the Neurointensive Care Unit at UCSF Medical Center.
After surgery to treat an aneurysm and remove her tumor, Chain spent two months in a "living coma" – awake and working to relearn basic skills like talking and chewing, but with no memory of her ordeal.
Before you fainted, did you know something was wrong?
Not at all. I thought of myself as a healthy young adult. But at the same time, I had severe headaches that I would sleep off for two days. I would go to bed on a Saturday and wake up on Monday. I had no idea it was anything serious, but at the hospital in Shanghai (where I was living at the time), I found out I had hydrocephalus and I was going into what were essentially mini-comas. The hydrocephalus was blocking all of my cerebral spinal fluid from draining, causing me to go into really long periods of sleep, and I was having short-term memory loss. I would repeat myself over and over in conversations.
Did you have surgery in Shanghai?
Yes, brain shunt surgery. They needed to relieve all the pressure, drain the fluid and put a shunt in my head. They did a great job; I'm alive.
Then you went back to the U.S.?
After I recovered, I flew back to the U.S. to continue seeking opinions and treatment options. Several neurosurgeons diagnosed me with an inoperable brain tumor. It looked benign but they didn't know yet. There was no sense of urgency to test it for cancer. The only hospital that went against everyone was actually UCSF.
So, you initially chose another hospital because you didn't want to have surgery?
UCSF wanted to do a brain biopsy because they said my brain scans were inconclusive, but after it was described to me what a brain biopsy was, it sounded scary, and I said, "Thanks but no thanks," and I chose the other medical institution. I liked that this other hospital was very reputable – one of the top hospitals in the country, great neurosurgery program, and I liked their answer of "You are going to be fine. Nothing is wrong." That is what I wanted to hear at that point.
How did you end up having your surgery at UCSF?
I actually fell into a coma in my sleep after I had an aneurysm burst. I was living alone, but by some miracle I had a friend in town visiting and she called 911. The ambulance arrived and they said I wasn't breathing. I had to be intubated and then they brought me to UCSF.
Describe your post-operative recovery:
I had brain surgery on June 21, 2011, and I woke up shortly after in what physicians call a living coma – something I had never heard of before – and that was a period where I was awake and learning to walk and talk again, but I wasn't aware of anything going on.
Can you describe what a living coma is?
They explained to my family: Erica is not in a medically induced coma, she is awake, she is starting to walk, she is starting to talk, she is breathing on her own, but she is not aware of anything. I had to be taught how to test if a stove is hot, to dial 911, and how to turn on a computer. When they asked where I lived, I said, "Timbuktu," so at least I am creative in a coma. My mom has said I was like a baby who grew up very rapidly. She even wrote down my first word, the first day I talked. Before I could talk they would tell me to answer using my eyes by blinking or using thumbs up and thumbs down.
Was that disorienting to lose two months of your life?
I have no memories of being in the hospital. I started picking up photograph snapshots from rehab and then that's when I started forming memories. The doctors told me in rehab that when your brain goes through a significant trauma it just stops recording, so if my brain wasn't recording, I wasn't forming new memories and that's why I didn't know what happened.
Describe the moment it all hit home and you realized what had happened.
So, I woke up on August 6 and called my mom. I said, "Mom, I think I know what happened." She goes, "What happened?" I said, "I had brain surgery." And all my mom said was, "Well, welcome back." Then she started crying.
How was rehab?
Recovery sucks. You get pushed to the limit and you're exhausted. After rehab I would just sleep for hours. I needed 24-hour supervision. I was so confused. Thank God for my friends and family, who were there for me through the whole thing. It's different for every patient, but I've actually recovered really quickly. Take that, three-year-recovery!
How are you feeling these days?
I feel blessed, I feel lucky, I feel great, I feel healthy. As a young adult I never thought I was invincible, but I know I took my health for granted because I had never had a medical issue before. Now I understand what being healthy means and today I feel healthy, happy and very, very lucky.
