I was diagnosed with a meningioma on March 6, 2014. I had surgery to remove it on June 16, 2014. I am glad that it is gone, but no matter what anybody says There is no such thing as a "good" brain tumor! This article really struck home for me.
The Brain Tumor Is Benign, but Threats Remain
In the frightening world of brain tumors, “benign” is a good word to hear. But even a nonmalignant tumor can be dangerous — especially if, as in my case, it goes undetected, becoming a stealth invader.
“Anecdotally, we often hear about women who were originally misdiagnosed — sometimes for years,” said Tom Halkin, a spokesman for the patient advocacy nonprofit National Brain Tumor Society.
When I developed tingling in my limbs 12 years ago, two Los Angeles neurologists diagnosed Guillain-Barré syndrome, a disorder in which the immune system attacks the nervous system. The symptoms of numbness and weakness ebbed and flowed for three years. Then one day, I couldn’t slide my right foot into a flip-flop. This got me a ride in a magnetic resonance imaging machine, which revealed a brain mass the size of a tennis ball. It was a benign meningioma, a tumor that grows in the membranes surrounding the brain and spinal cord.
After the diagnosis, I consulted with Los Angeles surgeons. “We’re going to cut your head open like a pumpkin,” one told me. I chose someone else, who had a stellar reputation, who was compassionate, and who did not compare my skull to a squash.
“You’re cured,” he said as I awoke in the operating room. Recovery took about six weeks and went smoothly, except for my right foot, which remains partly numb. I relearned to walk and to drive with my left foot, using adaptive equipment. Had my tumor been diagnosed earlier, I might have avoided a large craniotomy and permanent foot issues.
“It’s critical to find these tumors when they are small, when radiosurgery is an option, rather than when they are very big or produce a lot of symptoms, at which point it’s not optimal to treat them without doing open surgery,” said Dr. Susan Pannullo, the director of neuro-oncology and neurosurgical radiosurgery at NewYork-Presbyterian Hospital and Weill Cornell Medical College.
Nonmalignant meningiomas are twice as common in women as in men, though no one is sure why. Studies have examined the role of hormones and reproductive factors, but “nothing conclusive has come out of these studies,” said Jill Barnholtz-Sloan, a brain tumor epidemiologist at the Case Western Reserve University School of Medicine.
The only known causes for meningiomas, usually benign, are rare inherited genetic syndromes and therapeutic doses of ionizing radiation to the head and neck. “There’s been a lot of controversy about dental X-rays, cellphones and power lines,” Dr. Barnholtz-Sloan said. “Most studies have shown inconsistent or negative results.”
A challenge of diagnosing meningiomas is that they often grow slowly and can mimic other conditions. “The symptoms can be very subtle,” said Dr. Jon Weingart, a professor of neurosurgery at the Johns Hopkins University School of Medicine. “The brain can accommodate quite a bit in terms of molding and shifting.”
Although there have been no major studies of gender bias and brain tumors, a 2014 study in the journal Diagnosis found that women with strokes were 30 percent more likely to be misdiagnosed in emergency rooms than men. Dr. David E. Newman-Toker, an associate professor of neurology at Johns Hopkins who led the study, said it was reasonable to believe that women with other neurological disorders also had a higher likelihood of being misdiagnosed.
“Misdiagnosis is the bottom of the iceberg of patient safety and medical error,” Dr. Newman-Toker said. “We don’t have great data, because diagnostic errors are not systematically tracked or aggregated in any way.”
The symptoms of Byrdie Lifson-Pompan, a patient advocate in Los Angeles, started 11 years ago, when she was 38 and had an eye twitch. She consulted a prominent neurologist, who chalked it up to stress, and prescribed Xanax, a medication for anxiety. When her symptoms worsened, the neurologist ordered scans and concluded she had a severe form of Bell’s palsy, a disorder that affects the facial muscles.
A year into the ordeal, Ms. Lifson-Pompan went to a Little League baseball game, where she sat next to another parent, a plastic surgeon, who urged her to see a facial nerve expert. She did, and that doctor “put my scans up on a light box,” she said. “With a purple Sharpie pen, he circled the brain tumor,” a benign neural ossifying hemangioma, she said.
Complicated surgery and a long recovery followed, though she still cannot move the left side of her face or close her left eye.
After my surgery, I had regular follow-up scans; the reports indicated no tumor recurrence. Last year, I changed insurance plans and doctors; a new M.R.I. test and a review of previous scans revealed the meningioma had started to grow back five years ago, something my previous medical team had missed. The mass was pea-size, but the time for watchful waiting had passed. I had stereotactic radiosurgery, an outpatient procedure like something out of a sci-fi movie, in which beams of radiation zapped the tumor.
When surgery is necessary, there are technologies “that allow us to do things that were never possible in the past, as more and more surgeons are becoming interested in developing devices that allow better surgery with less complications,” Dr. Pannullo said. Two less invasive treatments that show promise are focused ultrasound, already in limited use, and special heat therapies, she said.
Another option is so-called keyhole surgery, which involves operating through small openings in the skull, such as near an eyebrow or behind an ear, though not all neurosurgeons like this approach. One concern is that if something goes wrong during the operation, doctors may have limited brain exposure to correct the problem.
Also, many patients with benign tumors are not candidates for keyhole surgery, Dr. Weingart of Johns Hopkins said, because the tumor must be small enough and in the right location. Even so, he said, surgery has become much safer over all in recent years because of advances in imaging, anesthesia and critical care. “Patients who have large tumors with a lot of swelling and mass, which require large craniotomies, can be expected to be out of the hospital in two to three days and back to their normal life within four to six weeks,” Dr. Weingart said.