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While at the University of Mary Washington, Anna Deaton learned she had an unusual neurological problem and needed surgery to fix it.
Surgeons cut into Deaton's head to reduce the pressure her condition, Chiari I Malformation, puts on the spinal cord and cerebellum. |
BY TALLY BOTZER
FOR THE FREE LANCE-STAR
Instead of looking for a job after graduating from the University of Mary Washington in May, Anna Deaton put her career aspirations on hold. She was about to undergo neurosurgery, and everything else had to wait.
Deaton, who lives in Virginia Beach, had been diagnosed in January with Chiari I Malformation, a rare and harmful skull malformation that causes part of the brain to slip down into the spinal canal.
"It's basically caused by my skull not being big enough to house my brain," Deaton said. "Or a contrary theory is that the brain is too big, and the skull is normal."
The condition can lead to cysts in the spinal column, and over many years, the top three vertebrae of the spine can fuse together from the pressure of the cerebellum.
The malformation, whose cause is unknown, can also prohibit spinal fluid from moving between the spinal column and the brain.
Without surgery, the cerebellum can put pressure on the brain stem, which controls involuntary and important body processes such as breathing and heartbeat.
Pain medication and careful monitoring can be sufficient treatment for people whose symptoms are minor. But for Deaton, surgery was a necessity.
GUESSWORK AND TESTS
Deaton, 22, first began feeling symptoms in high school--severe pain in her neck and shoulders. But it took years to get an accurate diagnosis.
"We originally thought it was a swimming injury," she said.
Last summer her symptoms grew worse, with pain so severe she sometimes vomited because of it. The family physician diagnosed her as having social anxiety disorder, and prescribed antidepressants, Deaton said.
"I think I was in the room for maybe five minutes [before getting the prescription]," Deaton said.
Frustrated by negative side effects of the antidepressants, Deaton made an appointment with a psychologist, who didn't think she belonged on antidepressants, but didn't know just what was wrong with her, either.
Deaton weaned herself off the antidepressants and, during a visit with her family physician, mentioned that her hands sometimes tingled. The doctor referred her to a neurologist, who performed tests to see if carpal tunnel syndrome or a nerve disorder was to blame.
The neurologist diagnosed Deaton with a pinched nerve and ordered an MRI, a detailed magnetic scan of her upper body. It was that test that finally led to a diagnosis.
After looking over the MRI, a radiologist diagnosed Deaton with Chiari.
"If you looked at my MRI, you could see my cerebellum, and it just looked odd, even to the untrained eye," Deaton said.
WORRY AND RELIEF
One neurosurgeon told Deaton that surgery was necessary to correct the malformation, and a second opinion confirmed it. Surgery was scheduled for June 20.
Deaton said she was nervous but knew something had to be done--the pain "hinders my life," she said before the procedure.
The neurosurgery is high-risk "because it's in a very sensitive area of the body," Deaton said.
But she said the chance of complications arising is less than 1 percent, while the chance of surgery fixing the problem is more than 90 percent.
Deaton's family--mom Susan, dad Richard and three sisters--gathered together to support her before, during and after the procedure.
"It's very humbling and overwhelming," Susan Deaton said. "We'd never experienced anything this serious before. There's been a great gathering of love and concern."
The Deatons said the stress level in their house was noticeably high around the time of the surgery, but the nerve-wracking procedure took only a few hours and was a success.
Deaton's neurosurgeon, Dr. James D. Dillon, explained the procedure in an e-mail.
"The treatment in Anna's case involved removing a portion of the back of her skull and the back of her first cervical vertebra," wrote Dillon, who practices in Virginia Beach. "The procedure was carried out without complication."
LOOKING BACK
Deaton and her family consider her quest for a diagnosis a comparatively short one, given the difficulty of diagnosing the condition.
Though she began feeling pain in high school, even she didn't link it to a larger problem until last year, when her mom came home from work to find her lying on the floor, flat on her back with her knees up.
Deaton explained to her mom that the position was the only way to make her severe headaches go away.
"I knew then that this was something beyond normal," Susan Deaton said.
She said she wished she and her daughter's doctors had realized the magnitude of the problem sooner.
"As a parent, you look back and see the pieces of the puzzle," Susan Deaton said. "You think, 'Oh, my goodness, I should've seen it.'"
Yet the rare condition was difficult even for the experts to spot.
"We felt a little bit like a rat in a maze, going from doctor to doctor," said Susan Deaton. "We ended up in a place we didn't expect."
LIFE STARTS NOW
Now, about two months after her surgery, Deaton is recovering well.
"There's hardly any pain," she said. "I am absolutely amazed at how it feels to be pain-free. I had no idea how much pain I was in before it was taken away."
At Deaton's last postoperative visit, her neurosurgeon told her she was four months ahead of schedule in her recovery.
"Her degree and rate of recovery have been the best that I have seen," said Dillon, her neurosurgeon. "I feel that she should be able to look forward to a full, normal life."
Deaton said she had a lot to look forward to before her surgery--especially laughing as hard as she wants to, but also being able to play Frisbee again and "just doing what everyone else is doing."
"I know it sounds cliche," Deaton said, "but I honestly feel like my life kind of starts now."
Tally Botzer, a University of Mary Washington graduate, is a freelance writer in Manassas.
