Savannah was at her computer doing physics homework when her right foot went numb.
"So numb that someone could hit it with a hammer and I wouldn’t feel it," she said. The numbness spread up her calf, to her hand and finally to her armpit.
By the time Hollis’ boyfriend got her to an emergency room in Lafayette, La., her left eye was darting wildly in all directions. She tried to sip some
Sprite but could not swallow. When she opened her mouth to speak, no one understood her.
Hollis, a pre-med major, had looked up her symptoms on the Internet and suspected a stroke. But for a 21-year-old, she figured, that couldn’t be right.
As the hours ticked away, Hollis never lost consciousness. She understood that something was terribly wrong, but she couldn’t grasp what was
happening to her.
About 10:30 p.m. an emergency room doctor called her mother, who was driving to Lafayette from her home in Hurst, TX. An MRI had revealed bleeding in Hollis’ brainstem, and there was no way to stop it.
"How far away are you," the doctor asked.
"Maybe four hours," Gwen Perkins replied.
"You need to hurry."
The ordeal
When Perkins arrived at the hospital, her daughter was slumped to one side in the bed and her eyes were rolling around so much that it was hard to
look at her without getting dizzy. Over the next three days, however, Hollis’ condition stabilized as the bleeding stopped on its own.
She had survived, but she was left with the effects of a hemorrhagic stroke.
"I couldn’t sit up, swallow, see, talk or walk," she said.
The bleeding in her brain began Aug. 26, 2006.
But nearly a month went by before Hollis learned what had caused it.
By then she was already entrenched in physical therapy at Baylor Institute for Rehabilitation in Dallas. Hollis thought that the bleeding had been an
isolated incident and that her greatest challenge would be learning to walk, talk and swallow again.
Then she learned that an MRI had revealed a cranial cavernous malformation in her brainstem, a vital area that controls breathing, heart rate and blood
pressure. It was the worst possible place for something like this to occur.
Now that a cluster of blood vessels had bled, it would likely happen again—and the next time could be fatal. If she did nothing, Hollis faced significant
impairment and the scary possibility of death.
"She would not be able to exercise, have children or even overexert herself," Perkins said. "And there was no telling when it would bleed again."
The malformation had to come out. But finding a neurosurgeon to perform the delicate surgery was difficult.
"The first doctor said that since it was on her brainstem, there was no way he’d touch it and we’d be hard-pressed to find someone who would," Perkins
said. Hollis’ family kept looking until they found someone willing to do the surgery. Dr. Duke Samson,chairman of neurosurgery at UT Southwestern
Medical Center at Dallas, agreed to take Hollis’ case.
"There is no effective treatment other than surgery,"he said.
"But the brainstem is a forbidden city as far as surgery is considered," Samson said.
Hollis did not hesitate. "If this was what I had to do to get on with the
rest of my life, then I had to do it," she said.
The disorder
Cerebral cavernous malformations occur in about 0.5 percent of the general population. Only about 10 percent occur on the brainstem.
On an MRI, they look like big pieces of popcorn in the brain, Samson said.
About 25 percent of people with a CCM never experience symptoms, according to the National Institute of Neurological Disorders and Stroke. The
CCM never grows, bleeds or causes seizures,headaches or paralysis.
"Some will remain almost like they’re in limbo forever, he said. "There’s no reason to take one out if it is not active." During Hollis’ surgery, an incision was made from behind her ear to the back of her head. Another CCM in a different part of a brain was left untouched
because it posed no risk. After surgery, Hollis took a year to recover before
enrolling at the University of Texas at Arlington. She also got involved with the Angioma Alliance,a nonprofit organization that supports education and
research. She plans to start a support group to help others facing similar health problems.
After spending so much time in hospitals, Hollis said, she decided against medical school and instead plans to teach science.
The future She has tried to get on with a life that has itslimitations. Despite therapy, she still cannot swallow, she said, except for tiny sips of chocolate milk or
strawberry shakes. For more than two years she has depended on a feeding tube for all of her nourishment. But she keeps trying. Once a runner, she has yet to regain her stamina, and she goes to bed early. It’s not exactly the lifestyle of the typical college student, but Hollis is not complaining. She just hopes that others who experience CCM symptoms do something about it.
"I kept thinking it was really nothing," she said.
"It wasn’t."
The experience has given Hollis an extraordinary perspective on life that even she seems unaware of, Perkins said. But clearly she feels she has a purpose. "It’s not to be a martyr or an inspiration but to show people there is no obstacle in life that can’t be overcome," she said. "I don’t think she even realizesthis gift she has walked away with, but everybody else does."
Jan Jarvis, Star-Telegram.com
"So numb that someone could hit it with a hammer and I wouldn’t feel it," she said. The numbness spread up her calf, to her hand and finally to her armpit.
By the time Hollis’ boyfriend got her to an emergency room in Lafayette, La., her left eye was darting wildly in all directions. She tried to sip some
Sprite but could not swallow. When she opened her mouth to speak, no one understood her.
Hollis, a pre-med major, had looked up her symptoms on the Internet and suspected a stroke. But for a 21-year-old, she figured, that couldn’t be right.
As the hours ticked away, Hollis never lost consciousness. She understood that something was terribly wrong, but she couldn’t grasp what was
happening to her.
About 10:30 p.m. an emergency room doctor called her mother, who was driving to Lafayette from her home in Hurst, TX. An MRI had revealed bleeding in Hollis’ brainstem, and there was no way to stop it.
"How far away are you," the doctor asked.
"Maybe four hours," Gwen Perkins replied.
"You need to hurry."
The ordeal
When Perkins arrived at the hospital, her daughter was slumped to one side in the bed and her eyes were rolling around so much that it was hard to
look at her without getting dizzy. Over the next three days, however, Hollis’ condition stabilized as the bleeding stopped on its own.
She had survived, but she was left with the effects of a hemorrhagic stroke.
"I couldn’t sit up, swallow, see, talk or walk," she said.
The bleeding in her brain began Aug. 26, 2006.
But nearly a month went by before Hollis learned what had caused it.
By then she was already entrenched in physical therapy at Baylor Institute for Rehabilitation in Dallas. Hollis thought that the bleeding had been an
isolated incident and that her greatest challenge would be learning to walk, talk and swallow again.
Then she learned that an MRI had revealed a cranial cavernous malformation in her brainstem, a vital area that controls breathing, heart rate and blood
pressure. It was the worst possible place for something like this to occur.
Now that a cluster of blood vessels had bled, it would likely happen again—and the next time could be fatal. If she did nothing, Hollis faced significant
impairment and the scary possibility of death.
"She would not be able to exercise, have children or even overexert herself," Perkins said. "And there was no telling when it would bleed again."
The malformation had to come out. But finding a neurosurgeon to perform the delicate surgery was difficult.
"The first doctor said that since it was on her brainstem, there was no way he’d touch it and we’d be hard-pressed to find someone who would," Perkins
said. Hollis’ family kept looking until they found someone willing to do the surgery. Dr. Duke Samson,chairman of neurosurgery at UT Southwestern
Medical Center at Dallas, agreed to take Hollis’ case.
"There is no effective treatment other than surgery,"he said.
"But the brainstem is a forbidden city as far as surgery is considered," Samson said.
Hollis did not hesitate. "If this was what I had to do to get on with the
rest of my life, then I had to do it," she said.
The disorder
Cerebral cavernous malformations occur in about 0.5 percent of the general population. Only about 10 percent occur on the brainstem.
On an MRI, they look like big pieces of popcorn in the brain, Samson said.
About 25 percent of people with a CCM never experience symptoms, according to the National Institute of Neurological Disorders and Stroke. The
CCM never grows, bleeds or causes seizures,headaches or paralysis.
"Some will remain almost like they’re in limbo forever, he said. "There’s no reason to take one out if it is not active." During Hollis’ surgery, an incision was made from behind her ear to the back of her head. Another CCM in a different part of a brain was left untouched
because it posed no risk. After surgery, Hollis took a year to recover before
enrolling at the University of Texas at Arlington. She also got involved with the Angioma Alliance,a nonprofit organization that supports education and
research. She plans to start a support group to help others facing similar health problems.
After spending so much time in hospitals, Hollis said, she decided against medical school and instead plans to teach science.
The future She has tried to get on with a life that has itslimitations. Despite therapy, she still cannot swallow, she said, except for tiny sips of chocolate milk or
strawberry shakes. For more than two years she has depended on a feeding tube for all of her nourishment. But she keeps trying. Once a runner, she has yet to regain her stamina, and she goes to bed early. It’s not exactly the lifestyle of the typical college student, but Hollis is not complaining. She just hopes that others who experience CCM symptoms do something about it.
"I kept thinking it was really nothing," she said.
"It wasn’t."
The experience has given Hollis an extraordinary perspective on life that even she seems unaware of, Perkins said. But clearly she feels she has a purpose. "It’s not to be a martyr or an inspiration but to show people there is no obstacle in life that can’t be overcome," she said. "I don’t think she even realizesthis gift she has walked away with, but everybody else does."
Jan Jarvis, Star-Telegram.com
Taken from The Spring 2009 Angioma Alliance NewsletterSince the article was written, Savannah has had the feedting tube removed, and is able to eat and drink (though very carefully)
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