Evil twins: the brain tumour that wasn’t

Published Apr 24, 2015

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Washington – Something was wrong with Yamini Karanam.

The PhD student had moved from Hyderabad, India, to Indiana to study computer science. But her new life in America was amiss. Once a brilliant student, she now had trouble understanding simple articles. Friends and colleagues would say things to her, only for the sentences to get mixed up in her mind.

Because that’s where Karanam’s problem lay: deep within her brain.

She went on holiday last fall but returned even more exhausted than when she left. Karanam slept for two weeks straight, missing school.

“Then came the headaches. Slips and misses at work followed,” she wrote on her blog. “There were doctors. First, a couple of them and then more.” Then came the “revelation”: doctors spotted what they thought was a cyst on Karanam’s pineal gland, a tiny pea-like structure in the centre of the brain that French philosopher René Descartes called the “principal seat of the soul.”

“The fear didn’t sink in yet,” Karanam wrote. “[My] will was undeterred because it was hardly put to test. [My] energy levels were sinking and fatigue started crippling [my] days … Months and weeks slipped through [my] fingers. There weren’t any diagnostic procedures left to run on [me]. Consultations followed procedures but nobody said anything useful. It was like white noise passed from the doctor to the patient to the support system. Now, they called it a tumor and that’s all 21st century medicine could do in three months.”

Karanam grew sicker and sicker as the tumor grew larger and larger. Reading was impossible. Soon, walking was, too. Only 26, Karanam could barely eat. Pains ran from her head throughout her body.

“But the men of science found no correlation between her suffering and the images,” she wrote. “[I] thought they would take [my] problems and own them. But they don’t and they didn’t. There was frustration and anger. Most of all, there was self-doubt. When sanity is in question, the best of us lose ourselves to the answer.”

Desperate to save Karanam’s life, her friends set up a fundraising account online.

“Yamini, a PhD student at Indiana University’s School of Informatics and one of my best friends, was diagnosed with a pineal tumor a few months ago,” the website read. “She has been seeing quite a few neurologists and neurosurgeons across the country in the past 6 months. Most of the doctors seem to think that the location of the tumor poses a lot of risks to the surgery and they think that the tumor could cause irreversible damage to her brain.”

“Could you please put an end to it one way or the other?” Karanam finally wrote to someone – God, doctors, anyone – on March 15.

Then came the medical procedure that would save Karanam’s life and reveal the bizarre malady behind her meltdown.

Karanam found a doctor, Hrayr Shahinian, performing radical “keyhole” brain surgeries at something called the Skullbase Institute in Los Angeles. Using the $32,437 her friends had raised for her, Karanam flew out to L.A. and put her life in Shahinian’s hands.

Shahinian made a tiny incision in the back of Karanam’s head, then strung an endoscope into her skull and through a natural channel in her brain to the site of the tumor. That’s when the doctor made a startling discovery.

Karanam’s tumor wasn’t just a tumor. It was a teratoma: a clump of bone, hair and teeth. A Frankenstein’s monster within Karanam’s own mind.

Teratomas have baffled scientists for almost a century. Some have speculated that they are basically twins that never quite develop and are instead absorbed into the surviving baby’s body. In fact, newborns occasionally have large teratomas attached to them like a conjoined twin. Other times, it’s not until adulthood that people realize they have one. In 2009, a British man named Gavin Hyatt “gave birth” to an “undeveloped identical twin” when a small lump pushed its way out of his abdomen. Hyatt named the tiny creature “little Gav.” Earlier this year, doctors in Hong Kong discovered two partially developed fetuses inside a newborn’s abdomen.

It’s not clear whether Karanam’s tumor was really her twin. But it was killing her. Shahinian successfully removed the tumor, which was not cancerous. He now expects Karanam to make a full recovery.

“This is my second one,” he said of the intracranial teratoma, “and I’ve probably taken out 7,000 or 8,000 brain tumors.”

When Karanam awoke in the hospital, she was stunned to learn that her tumor wasn’t just a lump of cells, but her “evil twin sister who’s been torturing me for the past 26 years,” she told NBC 4.

Physically, Karanam should be back to normal in three weeks. But her near brush with death at the hands of her own “twin” has clearly affected her. Her blog is titled, “The ‘n’ Phases of her Tumor,” which is basically a math joke about her ordeal. It features a blue cloud with a smiley face that could be easily confused for the tumor she had removed.

“It’s more of a happy brain!” Karanam tells The Washington Post. But she admits that her experience has left her with a strange connection to her twin.

“I was stuck with it much longer than I thought,” she says. “It doesn’t leave you much choice other than to deal with it the best you can.”

Washington Post-Bloomberg

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