Woman with 'evil twin' brain mass details her ordeal

INDIANAPOLIS — When Yamini Karanam's MRI scan came back, the informatics graduate student kept telling herself she was going to be fine.

She told her friend, "There's a growth in my brain."

And the friend replied, "Sweetie, nothing growing in your brain is good news."

Still, she never lost faith. Perhaps it was a burst cyst, doctors said, an infection, or a hemorrhage. More tests followed. And the experts were baffled. No one expected at that time that it was a hideous mass of bone, hair and teeth known as a teratoma.

Through it all she believed that eventually medicine would help.

"I kept thinking they're going to give me a magic pill and it will be just fine," said Karanam, who turned 27 last week. "For some reason, I never thought this was a problem of treatment. I always thought this is a problem of diagnosis. Once we have a diagnosis, the treatment will be easy."

Her optimism appeared misplaced.

Starting last fall, something seemed to have changed. Fatigue consumed the Indiana University-Purdue University Indiana student. She found herself sleeping 15 hours or more a day — and she was still exhausted. A few weeks later, she started having trouble understanding what she read. By the time she reached the second paragraph of a research paper, she had forgotten what the first paragraph said.

After two months of tests, her doctors advised waiting a few months to see what the growth would do over time. Meanwhile, Karanam felt worse and worse.

Scans taken at the end of January revealed an even larger lesion.

The symptoms Karanam reported did not match anything the doctors thought it could be. Doctors debated operating but were reluctant, given how deeply lodged in Karanam's brain the tumor was. Removing it would require a highly invasive procedure. The doctors weren't sure it was worth the risk.

The consensus was: Maybe, we should wait another six months and see what happens.

Karanam did not want to wait. She consulted yet another expert, Dr. Hrayr Shahinian, director of the Skull Base Institute in Los Angeles. She faxed all her test results and scans. Then they Skyped.

"Yamini," the doctor told her, "I have your reports in my hand. I'm looking at them. You need surgery."

At first, Karanam hesitated, still holding out for that magic pill. Shahinian told her that there was a good chance her symptoms might be completely reversible if she acted soon. Unlike some of the other doctors that she had consulted, Shahinian did not doubt her symptoms, which were inconsistent with ones typically seen with tumors in that location.

"In my head, it was like, I don't know if this really has a solution, but I'm going to trust him because he trusts me," Karanam said. "He said, 'Let's get the answer.' "

And the answer they would find after Karanam had endured six months of baffling symptoms, numerous tests and consultations with doctors in Indianapolis, Pittsburgh, London and Los Angeles would turn out to be not just good news for her, but also pretty weird news for the medical field.

Something was growing in her brain all right, but it was not what anyone expected. It was an oddity of medical science that had been with her since before birth, a rare growth of bone and hair and teeth that she would come to call "my evil twin sister."

And, in a strange way, that remarkable finding would validate her optimism.

'THERE FROM THE BEGINNING'

Shahinian said he understood why so many of his colleagues had demurred. The tumor was very deep in the brain and would be difficult to reach.

But Shahinian feared it was malignant and the best treatment would be to remove it as soon as possible. Even if it was benign, he knew, it would continue growing and eventually kill her by exerting pressure on her brain.

"She was 26 years and she was slowly dying," Shahinian said.

Since 2007, Shahinian has performed minimally invasive brain surgery with a technique known as endoscopic keyhole surgery. He had never done an operation on a tumor this deep.

On April 15, Shahinian and his colleagues performed the operation.

When his instruments reached the tumor, Shahinian was immediately concerned. Because it was hard, he feared it was malignant. Then he went inside the tumor and saw the hair follicles.

The surgeons found a mass of bone, hair and teeth and immediately knew that the tumor responsible for Karanam's months of confusion stemmed from a bizarre medical condition called a teratoma. Teratomas can be malignant, but Karanam's was benign.

Teratomas originate in the embryo, as the cells start dividing, a fact that led a post-operative Karanam to dub hers "my evil twin sister" once her doctors explained what they had found.

"Oh my god, this thing was there from the beginning," she said in a phone interview as she recuperated from her surgery in her Indianapolis home. "This thing has been living and breathing in me for the last 26 years."

Teratomas, especially those in the brain, are exceptionally rare, accounting for only about 0.5% to 2% of all brain tumors. Taking their name from the Greek for "monstrous tumors," teratomas are characterized by misplaced tissue such as bone, hair, teeth, even eyes, in parts of the body in which they should not appear.

Over time, teratomas grow and can impinge on other body parts.

Only once before in his three decades of brain surgeries, over the course of thousands of operations on brain tumors, had Shahinian seen a teratoma.

"Everybody was shocked and relieved at the same time," he said.

No one more so than Karanam who awoke after the five-hour procedure to hear the good news. As she and Shahinian joked about the evil twin that she never knew she had, he added one amendment: Her teratoma with its hair and teeth might have looked ugly but it was not evil. It was, after all, benign.