How did you find your way to UCSF?
The seizures were coming so often that I couldn't live on my own. I moved back to Northern California to live with my mom. She works in the health care industry, and she knew that UCSF was one of the best hospitals in the country for neurology. She encouraged me to make an appointment.
What did you learn at UCSF?
Going to UCSF was a turning point for me. The doctors took one look at my MRI and saw the problem. I had a hole in my skull, behind my left eye. A little nugget of brain tissue was pressing into the hole, and the pressure around the hole caused "sparks" that triggered my seizures.
I was amazed that they figured it out so quickly. The doctors at UCSF knew exactly what they were doing.
Wait, you had a hole in your skull?!
Yes! Most likely I was born with it.
What did your surgeon recommend?
My neurosurgeon, Dr. Edward Chang, said I needed brain surgery to remove the brain tissue that had grown into the hole. Unless he removed it, the pressure would continue to cause seizures, and they might get worse. He told me I could end up with a serious mental disability.
The prospect of brain damage was terrifying. Luckily, Dr. Chang was very caring. He calmed me down and made me understand the pros and cons of the surgery. It helped that I had tremendous faith in him and in UCSF. Already, the experts there had found the problem when no one else could see it.
I also knew Dr. Chang did a lot of brain surgeries, so he must know what he was doing! Besides being very smart, he was very compassionate, which helped a lot.
Describe your treatment experience.
While I was going through various tests and procedures, the seizures were getting more and more frequent. I was having seizures every week. They always came in pairs, so after the first one, I'd brace for the second. My UCSF doctors helped me figure out how to prevent the second seizure. That was huge. With their help, I reduced the number of seizures I was having by 50 percent, even before the surgery!
During my hospital stay everyone was so nice and attentive. I was really nervous going into the operation because there was a chance it wouldn't go well, but I felt like I was in good hands.