Published: Oct. 6, 2010
Updated: Oct. 6, 2010
By Carol Harbers
For most of her life, Caroline Niblock had taken medication daily that affected her cognitive abilities, but controlled her seizures. It was a trade-off she had no choice but to accept.
Niblock, 40, had been born with a brain arteriovenous malformation (AVM), a tangle of abnormal, weakened blood vessels. AVMs can cause not only seizures but bleeding in the brain (hemorrhagic stroke), neurological injury, even death.
Since age 16, she had been on medication to control seizures caused by the AVM, the effect of which, she says, was like a “wet blanket over my brain.” And because of the increased risk of hemorrhage, her doctors advised her not to become pregnant.
When Niblock was a child, her doctors had attributed her seizures to a fall: At two years old, she looked out a window and saw her grandfather drive up. She banged her tiny hands on the window screen to get his attention, and ended up on the gravel driveway two stories below. It was not until she was 16 that the real culprit, the AVM she had been born with, was discovered.
As an adult, Niblock searched for a neurosurgeon who could help her -- and moved ahead with her life. “I consider myself lucky,” she says. “I graduated from college, I played sports, I didn’t have other health issues.”
But still, the wet blanket. “The medication is like a big hammer on a tiny nail,” says Niblock. “It calms the seizures, but there were also cognitive effects for me. When I started taking the medication, even my teachers noticed a difference in my cognitive abilities.”
And there was the constant risk of rupture. Each year that went by meant about a four percent increase in her risk of stroke.
Niblock continued to see neurosurgeons over the years, asking about her candidacy for surgery. “They all said the risks outweighed the benefits,” she says, but she persisted.
In July 2009, Niblock heard something unexpected: there was something else, something new. Go see Dr. Kirkpatrick at Duke Radiation Oncology.
John Kirkpatrick, MD, PhD, was using the Novalis Tx to deliver radiation treatment to brain tumors and other lesions in the brain. In fact, just one year earlier, Duke had become the first medical center in the world to begin using the new stereotactic radiosurgery technology.
The Novalis Tx works by delivering high-energy, precisely shaped beams of radiation to the lesion from multiple directions. This allows the physician to target the lesion with extraordinary precision.
“They were enthusiastic,” says Niblock. “They told me that the technology had caught up with my AVM. And my reaction was, ‘Oops, I’m not prepared for this!’” Her persistence had paid off, but the path she had been on her entire life suddenly turned.
“I was shocked because this was the first time anyone had said the AVM could be treated safely,” she says. “But Dr. Kirkpatrick took his time to make sure I understood the whole process and all risks involved. His professionalism and wealth of knowledge made me feel very assured about the decision I made to go ahead with the treatment.”
Before the treatment, there was important preparation to be done. Niblock’s team of caregivers would now include neurosurgeon Ali Zomorodi, MD.
Through an embolization -- basically plugging the vessels supplying the AVM using a groin puncture -- Zomorodi dramatically reduced the size of the lesion.
Kirkpatrick would have a much smaller, better-defined area to treat, and Niblock would have a reduced risk of side effects.
“You never know what you’re going to get after an embolization,” says Kirkpatrick. “An AVM is like a bird’s nest of vessels. The procedure can leave it even more irregularly shaped than before, and that was true in Caroline’s case.”
But as it turns out, an irregular shape was not a problem -- at least not the type of problem it used to be. “In the past, we would have had to use a bigger radiation field,” says Kirkpatrick. “Now, we paint only the area we want to treat. It’s incredibly precise.”
The radiation treatment in January 2010 was surprisingly easy. “It took about an hour. I was awake, listening to music,” she says. “I had a mild headache for a couple of days and that was it.” She also had some hair loss at the radiation site.
Although Kirkpatrick will continue to watch Niblock, he does not foresee more treatments or problems. Her future now includes a greatly reduced risk of stroke, and more.
Pregnancy now could be an option for her, and Niblock can also look forward to a new way of thinking. “I will taper off my medications over the next two years,” she says.
“The wet blanket will be gone. Plus, the treatment means the AVM won’t monopolize the blood flow in my brain anymore. To be rid of this AVM, and off medication that I have been on since age 16, is a very good thing and I am excited about the future.”