Carnegie Mellon student participates in own brain surgery

Pennsylvania

Doctors scanned her brain, discovering that a brain hemorrhage was causing her symptoms

This is a sign on the Carnegie Mellon University campus in Pittsburgh Friday, June 7, 2019.

(AP Photo/Gene J. Puskar)

PITTSBURGH (AP) — For someone just listening in, the conversation sounded almost like small talk.

“Before Pittsburgh you lived in …?”

“How do you say pizza in Chinese?”

“Did you eat a lot of that in Chicago?”

But the conversation was anything but ordinary. Lingwei Cheng, 27, lay on an operating table last fall at UPMC Presbyterian Hospital. Multiple screens showed images of her brain under a microscope, with doctors nipping away around a mass of purplish blood vessels — called a cavernous malformation — nestled in the part of her brain that controls speech.

To make sure that the surgeons didn’t damage brain matter that would affect Ms. Cheng’s speech, they had to keep her awake and talking — answering questions in both English and Chinese.

For Ms. Cheng, a Ph.D. student in public policy and machine learning at Carnegie Mellon University, the trip to the operating table was months — and many miles — in the making. She grew up in China but has lived in the U.S. for a decade. Last spring during CMU’s spring break, she flew to Norway to visit her boyfriend. COVID-19 travel restrictions hit while she was there, and she stayed in Norway through the summer.

Hanging out with friends there in June, she came down with a bad headache and lay down to rest. When her boyfriend started to talk to her, she could no longer understand him. Or reply.

“It was really scary,” she said. “I could hear him very clearly — I just couldn’t understand any of the words.”

Her boyfriend called an ambulance, and in the hospital, unable to speak, she struggled to explain her medical condition.

“The Norwegian physician, he was asking me to tell him what happened,” she said. “I was so frustrated … this is exactly what I cannot do right now.”

Doctors scanned her brain, discovering that a brain hemorrhage was causing her symptoms. It resolved several hours after they began. Ms. Cheng was put on anti-seizure medication and told that she couldn’t fly for two weeks. After that two-week period, they urged her to get back to the U.S. to get the hemorrhage evaluated.

Returning to Pittsburgh in August, she contacted CMU student health, which referred her to UPMC neurosurgery. More advanced brain scans showed a cerebral cavernous malformation — a rare condition where blood vessels get tangled into a mass that resembles a mulberry. The malformations may sit harmless or may leak as Ms. Cheng’s did, causing symptoms that improve as the blood is re-absorbed.

“They usually don’t kill you, but they can cause damage,” said Dr. Robert Friedlander, chairman of the department of neurological surgery for the University of Pittsburgh and UPMC, who evaluated Ms. Cheng and performed the surgery. “They can bleed in clusters — sometimes once and not again for years and years and sometimes two or three times in a year.”

Some people are born with them and some develop them spontaneously, as Dr. Friedlander believes was the case with Ms. Cheng. He removes about 20 cerebral cavernous malformations per year, though most are not in the area of the brain that controls speech.

Dr. Friedlander used technology developed at Pitt called high-definition fiber tracking to pinpoint the exact location of Ms. Cheng’s malformation to a part of the brain that controls speech and comprehension.

Because of the threat of future bleeds and the possibility of permanent damage to her speech, Dr. Friedlander recommended that Ms. Cheng have surgery to remove the malformation.

And not just any surgery — he wanted her awake and talking so that he could make sure that her speech wasn’t affected.

Ms. Cheng wasn’t expecting brain surgery, and certainly not one that she would participate in.

“I knew that I didn’t really have any other options, but it was hard to accept,” she said.

To calm herself, she watched YouTube videos of other people undergoing similar surgeries.

With no family in Pittsburgh and COVID-19 travel restrictions in place, Ms. Cheng struggled to get support in place for her surgery and recovery. UPMC wrote a letter explaining the situation, a letter that her boyfriend used to get an exemption on humanitarian grounds to come for a week from Norway. Getting her mother to Pittsburgh from China required the pulling of every string imaginable.

One of Ms. Cheng’s friends from CMU who had been a Rhodes Scholar reached out to people whom she knew in the U.S. State Department who were working internationally. CMU reached out to U.S. Sen. Bob Casey, who wrote a letter on Ms. Cheng’s behalf asking for her mother to be able to visit.

Through some combination of those and other efforts, Ms. Cheng’s mother was able to come and remains in Pittsburgh.

Through the fall, the patient was able to function and continue her Ph.D. studies, though she did get headaches if she talked consistently for a long time — such as during a three-hour recitation that she taught on Fridays. The surgery took place Nov. 17.

“We’re in the operating room together,” Josh Sunderlin, a surgical neurophysiologist, told her as he woke her up during the procedure. “You’re safe. You’re in surgery. Everything is going really well. We just have to have you hold still.”

Listening for slurred speech or areas where Ms. Cheng might have difficulties, Mr. Sunderlin showed her various pictures on a tablet. With Chinese translator Hong Li present to assess her Chinese speech, Mr. Sunderlin also asked her to respond in her native language.

“What’s this?” he started.

“Apple,” she said.

“How do you say it in Chinese?” he followed up.

Dr. Friedlander described the importance of being awake during the procedure to Ms. Cheng as the difference between using a paper map and a live GPS map where changes could be noted in real time.

Ms. Cheng came into the surgery “perfect,” Dr. Friedlander said. She was a fully bilingual individual who uses speech and writing as part of her career.

Because of the location of the cavernous malformation, a slipup during the surgery could have devastating consequences.

“In these regions of the brain I call hyper eloquent, there’s no room for error,” Dr. Friedlander said. “Every millimeter counts.”

Ms. Cheng held a conversation during the surgery effortlessly — identifying various foods, the days of the week, mentioning the deep-dish pizza she ate when she lived in Chicago and even making a couple of jokes.

“If I noticed that she started to speak a little more slowly, make some paraphrasing errors, I might have had to change my strategy,” Dr. Friedlander said, “and leave some of the lesion behind.”

In the months since, Ms. Cheng has recovered well, taking medication to try to prevent seizures that can be triggered by the surgery.

As someone young and healthy, who runs 3 miles a day, she never expected something like this. But in a sense she has also appreciated how having a brain condition forced her to be more aware of managing stress and more focused on work-life balance.

And as someone who came to Pittsburgh to study technology and policy, she also learned a real-world lesson from this experience.

“For my own research, I study public policy and also machine learning and how all these algorithms can be applied to the future of health care,” Ms. Cheng said. “I never thought I would be one of those people to experience that.”

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