The Meningioma Mystery

Why do we know so little about this brain tumor?

The most frequent type of brain tumor is one that you may never have heard of. It can grow silently for years before it’s noticed, reaching two inches or more in diameter. It’s known as meningioma, and it accounts for nearly 37 percent of primary brain tumors. So why aren’t we more aware of it?

“I think they get less attention because they’re generally considered to be benign,” says Anoop Patel, M.D., UW assistant professor of neurosurgery at UW Medical Center’s Alvord Brain Tumor Center. “But these tumors can be debilitating or even life-threatening if left unchecked over a long period of time.”

A meningioma is a tumor that forms on the meninges, the membranes that cover the brain and spinal cord just inside the skull. Even though they’re outside the brain, meningiomas are thought of as brain tumors because they can compress or squeeze the brain, nerves and vessels. About 90 percent of them are benign, but malignant meningiomas — which can grow for years without noticeable symptoms — can invade the brain, spread to other organs and pose severe health risks.

When symptoms do appear, they’re often subtle: blurry or double vision, headaches or memory loss. Or, in the case of Julie Heller Varon, a sudden numbness of the tongue.

Last summer, Varon, a realtor in Bellevue, was playing tennis when her teeth began chattering. Thinking she was just feeling cold, she went to talk to her teammates — and was shocked to find her tongue was so numb that she couldn’t speak.

“I knew immediately that this was something to take seriously,” she says. At a nearby hospital, doctors performed a CAT scan, then an MRI, and showed her a fist-sized mass behind her right eye. It was the first time she’d ever heard the word “meningioma.”

Despite being relatively common, the causes of meningioma aren’t well understood. Although there can be a genetic component, it’s not considered a primarily genetic disease. However, research suggests a correlation between meningioma and hormones: Women are more likely to be affected, and high levels of hormones such as estrogen and progesterone can cause rapid tumor growth.

Once a meningioma is diagnosed, the best treatment may be no treatment at all. Surgery to remove these tumors is difficult and risky, and require highly specialized neurosurgical approaches when they occur in difficult locations. For benign, slow-growing tumors, observation and monitoring is the least invasive option. Radiation can shrink tumors down to a more manageable size.

“It’s a balance between being aggressive enough to treat the tumor, but not leaving patients with long-term neurological deficits,” Patel says.

Varon’s tumor was large but appeared to be benign, so she had some time to evaluate her options. For three months, she traveled, consulting neurosurgeons across the U.S. and Canada. When she talked to Patel, she knew he was the right choice: He’d come to UW Medicine because of the institution’s commitment to meningioma research and treatment. Best of all, he practiced in her own city. The seven-hour operation took place at UW Medical Center just a week after they met.
“Everyone that I interfaced with was terrific, from scheduling to post-operative care,” Varon says. Although she prepared for a potentially long recovery, her occupational and physical therapists soon fired her as a patient because she was doing so well. In fact, Varon was able to drive and play competitive tennis again five weeks after the surgery, and she’s joined a Facebook group called Meningioma Mommas and Poppas, whose 4,500 members — including several of Patel’s patients — offer support to each other.

Despite Patel’s dedication to neurosurgery, he’d be happy to lay down his scalpel if better treatments were available. And, through the research he’s doing at the center, he hopes to make that dream a reality.

“Currently, meningioma is primarily a surgical disease, and that surgery can be very challenging,” says Patel. “If we can culture these tumors in the lab and develop new treatment modalities, maybe we can ultimately find the Holy Grail: never having to do surgery for a brain tumor again.”

What Are the Signs of Meningioma?

The signs and symptoms of a meningioma usually begin gradually and develop over time. Often, however, they don’t cause noticeable symptoms at all, and the tumor is only discovered through imaging scans. Common symptoms include:

  • Vision problems, such as seeing double or blurriness
  • Hearing loss or ringing in the ears
  • Headaches that get worse with time
  • Memory loss
  • Loss of smell
  • Seizures
  • Weakness in the arms or legs

ACCELERATE RESEARCH

With a gift to the Alvord Brain Tumor Center Fund or the Alvord Brain Tumor Center Clinical Support Fund.

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