COURTESY KELLY BRYAN SMITH
Read more Body&Soul stories and the blog at jacksonfreepress.com
by Kelly Bryan Smith
â€˜Something Wrong with Your Brainâ€™
COURTESY KELLY BRYAN SMITH
Less than two months after brain surgery, Kelly and her family returned to Jackson to start life anew.
â€˜Iâ€™ve Seen Thisâ€™ 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 wouldnâ€™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. â€œIâ€™ve seen this kind of tumor before during my training,â€? he said, â€œand 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.â€? 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. Itâ€™s possible I may have had some neurological problems and gradual vi- Kelly modeled the latest fashions in post-brain surgery headwear and hair sion loss long before I woke up that April design in the neurological intensive care unit at Johns Hopkins Hospital. 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 0OSSIBLE 3YMPTOMS OF benign and some malignant, writes Dr. Peter Black in â€œLiving A "RAIN 4UMOR with a Brain Tumorâ€? (Holt Paperbacks, 2006, $18.99). Undiagnosed pituitary tumors may affect a larger perÂ‡9LVLRQKHDULQJRUVSHHFKSUREOHPV centage of the adult U.S. population, perhaps as much as 17 Â‡6HYHUHRUXQXVXDOKHDGDFKHV percent, some sources claim. Â‡'L]]LQHVVRUEDODQFHGLIÂżFXOW\ My particular tumorâ€™s location is rare. I discovered that Â‡&RQIXVLRQRURWKHUPHPRU\SUREOHPV there have only been 20-odd recorded cases in the world, and Â‡8QXVXDOQDXVHD I am now one of them. Yippee. Â‡6HL]XUHV Many cavernomas are asymptomatic until patients reach Â‡/RVVRIIHHOLQJLQDQH[WUHPLW\ their 20s or 30s. Untreated, they carry the risk of unexplained Â‡6WURNH 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 )F 9OU 3USPECT A "RAIN 4UMOR for me. Under the Knife On June 1, my family and I met with Dr. Rafael Tamargo, one of the worldâ€™s premier neurosurgeons, at Baltimoreâ€™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.
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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 runâ€”and live. Once a year, I will return to Baltimore to follow up with Tamargo, and, more importantly, to make a pilgrimage to my sonâ€™s new favorite placeâ€”the B&O Railroad Museum. I havenâ€™t figured out, yet, what my sudden illness and recovery means for my lifeâ€™s ultimate direction. But I do know one 41 thing: After surviving brain surgery, I can do anything. jacksonfreepress.com
he neurologist walked into the room and closed the door quietly behind her. She turned off the lights and went to her computer monitor. â€œHere is your brain tumor.â€? She clicked through images of the large mass in my head while I struggled to catch up. â€œWhat?â€? The doctor paused. â€œI should probably tell you that I donâ€™t think this will kill you, but you are most likely going to go blind,â€? she said. â€œThereâ€™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.â€? 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 hadnâ€™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. â€œThere is nothing wrong with your eyes,â€? said the eye doctor. â€œThere is something wrong with your brain.â€?