“I had worked about 12 hours that day,” said Lee Xhakollari of Union City. “I had just started to exercise. I was about five minutes into a Zumba routine when my foot became paralyzed with a kind of a pain that I can’t really describe. That was the beginning of the actual seizure.”
“The foot became paralyzed, the leg became paralyzed, the left side, the neck,” she added. “It was so quick I couldn’t even turn to grab the couch to stabilize myself. By the time it got to my arm and shot to my neck, I remember my body not being able to hold me up and I fell backwards onto the floor and curled up into a fetal position until I eventually passed out.”
That was on July 9, 2013. It was the beginning of a frightening journey that would end with a surgeon performing brain surgery on Xhakollari while she lay fully awake and aware on the operating table.
Calling a neighbor for help after that first seizure, Xhakollari was taken to the hospital, where she was admitted for extensive testing.
“I was there for four days,” she said. “I had like every test known to man. They kept telling me I was a medical anomaly.”
The final diagnosis was that Xhakollari had suffered a stroke, even though there was no physical sign of one.
“I went home with my discharge papers which had not been gone over thoroughly with me,” Xhakollari continued. “I’m still bitter about that. I happened to go through the papers and got to the stage where it said to make an appointment with Dr. Yao. I looked at my husband and asked, ‘Do you think that’s weird that they referred me to a neurosurgeon and nobody told me?’ ”
“Being awake and fully engaged during brain surgery is absolutely a nuts idea.” –Lee Xhakollari
Still on leave from work, Xhakollari made an appointment with Dr. Kevin Yao. “We went into the city, took the first five minutes to tell him what happened,” she said. “He popped in my MRI and, within I’d say 30 seconds, very apologetically said, ‘I don’t know how to tell you this but you didn’t have a stroke. You have a brain tumor.’”
A radical suggestion
“I was shocked and I was angry,” said Xhakollari. “I was shocked that I spent four days in the hospital and angered that the word ‘tumor’ had never even crossed someone’s lips.”
“It’s a type of tumor that can come in a variety of different levels of aggressiveness, fairly slowly to very aggressive,” said Dr. Yao, describing what is known as a glioma. “No one really knows if there’s any direct environmental factor that causes it. Most likely genetic alterations in one cell, which essentially goes haywire and starts to multiply.”
As to why it went undiagnosed in the hospital, Dr. Yao said, “Her imaging, while very typical for lower grade gliomas, can be mistaken for other types of disease process in human brain.”
Immediately Dr. Yao scheduled a biopsy, which confirmed his diagnosis. “It happened to be in exact part of brain that controlled the left leg, the left side of her body,” said Dr. Yao. “Knowing where it was, inevitably over time it would become a more aggressive, faster growing tumor. Eventually it would cause her to be paralyzed and lose control of the left side of her body.”
That left several options: chemo, radiation, or something more radical.
“At the second meeting he told about the brain surgery,” said Xhakollari. “He said the best option was awake surgery. He told me the risks of having it. He explained because [the glioma] sat on the motor cortex that controlled the left side of my body, if it was done while I was completely unconscious, we would run a much stronger chance that I would be paralyzed.”
“For her specific case, to do this kind of surgery, the safest way was to have her awake so we could really monitor how her leg and left side moved and worked,” explained Dr. Yao. “We can do this because the brain itself has no nerve endings. It’s one of these ironic things: the brain itself can’t feel, even though it’s the hub of all sensations in the body.”
“What does have nerve ending are the scalp and skull,” he continued. “We give the patient anesthesia, make sure the patient can’t feel while doing the initial exposure, opening the skin. We get through the skull to the brain and once exposed, the patient wakes up, but can’t feel.”
“I remember one of the first things out of my mouth was ‘I can’t move my neck,’” said Xhakollari, describing the confusion of coming out of anesthesia on the operating table. “Very quickly I moved into pretty much full comprehension and having full conversations with people. I was making jokes, I was talking about my job. I asked if I could have bourbon.”
“One key thing to know, these type of low grade gliomas look like normal brain tissue, not like some obvious thing like a mass or a peanut,” said Dr. Yao. “We use navigational computer software to do what’s called mapping of the brain, to identify where the function is that we don’t want to interrupt. While we take out the tumor in real time we have Lee continue to interact with us, to move the left side of her body.”
Altogether Xhakollari thinks she was conscious about 45 minutes. “All I remember towards the end was I had some scary moments where I felt I couldn’t move my leg and I remember that I got emotional and started to cry. Dr. Yao stepped away from the surgery for a minute and didn’t do anything, he let the brain regenerate on its own and then he stepped back in and asked if I could move my leg now and I could. It was weaker but I could move it. That’s the last thing I remember from being awake.”
“She went through it just great,” said Dr. Yao. “We were able to take out everything that I wanted to. Her MRI shows the tumor has been removed. It did cause her to have minor weakness in her left leg, which is exactly why we do it awake, so we know when to stop.”
“I would say I’m 95 percent the way I was before I went in for surgery,” said Xhakollari. “I had a loss of movement after the surgery, my toes and the bottom part of my leg where I could not move anything. I did physical therapy. I got the foot and ankle motion back within 10 days. But I still have swelling up there. I’m still in recovery. My brain may not be fully recovered for a few months or even a year.”
Asked why this type of surgery is so rare, Dr. Yao said, “There are only a handful of surgical centers that do this type of surgery. The technique is like an art. Most surgeons really haven’t learned this to the point where they’re comfortable doing it. I had the fortune of training at Anderson [University of Texas M.D. Anderson Cancer Center].”
Not all tumors lend themselves to this type of surgery, according to Dr. Yao. In addition, there’s a non-physical aspect. “It takes a certain patient to tolerate it both medically and psychologically. You really have to develop a rapport with the patient. This is a mutual endeavor. Lee is the type of person who really faces problems head on, makes decisions, doesn’t look back.”
“Being awake and fully engaged during brain surgery is absolutely a nuts idea,” summed up Xhakollari. “The weirdest piece is that I was diagnosed with a brain tumor in July, I had surgery in September and I was back to work in November. It was sort of like a blip on my radar. It was kind of like gone in a flash.”
Art Schwartz may be reached at firstname.lastname@example.org.