The neurologist walked into the room and closed the door quietly behind her. She turned off the lights and went to her computer monitor.
"Here is your brain tumor."
She clicked through images of the large mass in my head while I struggled to catch up. "What?"
The doctor paused. "I should probably tell you that I don't think this will kill you, but you are most likely going to go blind," she said. "There's not really anything you can do about it, since no surgeon is going to want to operate in that sensitive area of the brain."
About two weeks before, on April 25, 2011, I woke up with blurred vision. I told myself that I had woken up too early, that as a graduate student I had spent too much time in front of the computer the day before.
When my vision hadn't cleared two days later, I went to the University of Southern Mississippi student health center. Doctors there sent me to emergency appointments with an eye doctor and then a neurologist.
"There is nothing wrong with your eyes," said the eye doctor. "There is something wrong with your brain."
'I've Seen This'
The tumor was inside my optic chiasm, the area of the brain where the optic nerves intersect.
After the initial prognosis of complete blindness, I visited several brain surgeons and spoke with several more on the phone. Some were optimistic; others wouldn't touch it. Many had never heard of the type of tumor I had. I waited two weeks for an appointment with Dr. Richard Clatterbuck, a neurosurgeon in Hattiesburg. It was worth the wait.
"I've seen this kind of tumor before during my training," he said, "and it is extremely rare to find this kind of tumor in this location, actually inside of the nerves in the optic chiasm. If you want any chance of sight, you need to go to Johns Hopkins."
Clatterbuck diagnosed a cavernous malformation, or cavernoma, frequently caused by genetics. Such tumors can also occur randomly, which neurologists believe happened in my case. I was probably born with my tumor, a small mass of abnormal blood vessels that continuously bled and scabbed over, accreting layers upon layers to form what may have looked like a chunk of partially cooked ground beef, according to my Google search. It's possible I may have had some neurological problems and gradual vision loss long before I woke up that April morning with sudden visual deterioration.
It is not uncommon for women in their late 20s and early 30s to be diagnosed out of the blue with different kinds of brain tumors. About 100,000 Americans are diagnosed with brain tumors each year, some benign and some malignant, writes Dr. Peter Black in "Living with a Brain Tumor" (Holt Paperbacks, 2006, $18.99).
Undiagnosed pituitary tumors may affect a larger percentage of the adult U.S. population, perhaps as much as 17 percent, some sources claim.
My particular tumor's location is rare. I discovered that there have only been 20-odd recorded cases in the world, and I am now one of them. Yippee.
Many cavernomas are asymptomatic until patients reach their 20s or 30s. Untreated, they carry the risk of unexplained seizures, stroke or permanent vision loss.
My most crucial lesson was the importance of getting a second opinion. Complete blindness just was not an option for me.
Under the Knife
On June 1, my family and I met with Dr. Rafael Tamargo, one of the world's premier neurosurgeons, at Baltimore's Johns Hopkins Hospital. He assured us that although this tumor was rare, he had experience with it. Although immediate brain surgery was my only option, he was confident that he could at least partially restore my vision.
Two weeks later, I prepared for a pterional craniotomy. The surgeon shaved my head, made an incision from the middle of my forehead to behind my ear and peeled back the skin from a quarter of my head. He removed a square piece of skull to give him access to my brain. Some of my frontal lobe was moved during surgery so that a microscope and other surgical tools could reach the tumor inside my optic nerves near the base of my brain.
I knew the risks: complete blindness, stroke, seizures, infertility, mental retardation, diabetes insipidus and death. Tamargo warned me that I might be in the hospital for months, and that I might need more months in rehab to learn to live as a blind person. But I had no other options. Indeed, through my own research, I discovered that cavernomas had no successful treatment other than surgery. Radiation therapy makes this type of tumor worse.
After six hours under the knife, the surgeon put my head back together with titanium screws and stapled my skin back in place. When I woke up, nurses led me through a series of tests to assess my neurological function and vision. Vision!
I spent a short time in the neurological intensive care unit. Sensory input overwhelmed me. The smell of food, the sound of squeaking carts and the sight of someone walking toward me all made me reel with nausea.
Several times a day, doctors with clipboards, nurses with needles, occupational and physical therapists barraged me. They took me on scavenger hunts, had me navigate the hospital stairs again and again, and asked me to complete piles of worksheets. I had MRI scans and several Ivs. Each night, they woke me multiple times for steroids to reduce brain swelling, drugs to prevent blood clots and more medication.
Five days after surgery, they kicked me out. My family rented a townhouse a few blocks from the hospital and cared for me while I recovered. At my six-week follow-up, Tamargo sent me back out into the world (albeit with a large permanent blind spot in my right eye, caused by years of a hidden tumor stretching my optic nerve almost to its breaking point) to drive and read and run—and live.
Once a year, I will return to Baltimore to follow up with Tamargo, and, more importantly, to make a pilgrimage to my son's new favorite place—the B&O Railroad Museum. I haven't figured out, yet, what my sudden illness and recovery means for my life's ultimate direction. But I do know one thing: After surviving brain surgery, I can do anything.
Possible Symptoms of a Brain Tumor
• Vision, hearing or speech problems
• Severe or unusual headaches
• Dizziness or balance difficulty
• Confusion or other memory problems
• Unusual nausea
• Seizures
• Loss of feeling in an extremity
• Stroke
If You Suspect a Brain Tumor or Neurological Problem
1. Don't Google your symptoms and freak out. Trust me.
2. Make a list of your symptoms to discuss with your doctor.
3. Ask your primary-care physician for a physical exam and a referral to a neurologist.
4. Be prepared for an MRI, blood tests and coordination tests.
5. If you receive a neurological diagnosis, get a second opinion.
6. Seek out others with similar conditions for answers and support.
Resources
• "Living with a Brain Tumor" by Dr. Peter Black (Holt Paperbacks, 2006, $18.99)
• "100 Questions & Answers about Brain Tumors" by Dr. Virginia Stark-Vance, (Jones & Bartlett Learning, 2003, $22.95)
• American Brain Tumor Association: http://www.abta.org
• National Brain Tumor Society: http://www.braintumor.org
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