In Search of a Miracle Worker

Kathy Lazarini, a teacher in Cary, Illinois, was naturally concerned when her daughter came inside from playing one afternoon complaining of a headache. She and her husband, Wayne, put six-year-old Samantha to bed, believing their long-haired little girl had a touch of the flu. But when Samantha awoke in the night with a fever, vomiting violently, and suffering neck and lower back pain, they rushed her to a Chicago hospital near their home.

A CT scan and an angiogram confirmed the problem: Samantha had an unruly tangle of blood vessels snarled into a mass in her brain, a condition called an arteriovenous malformation (AVM). "We had never even heard of AVMs before," recalls Mrs. Lazarini, who was devastated to learn how close her daughter was to paralysis, stroke or even coma. Thus began an ordeal that would send the family across the country in search of a miracle.

AVMs are congenital abnormalities, progressively enlarging knots of errant vessels in the brain. They appear in children and young adults, and lacking tiny capillaries, carry fast-traveling blood. They grow by co-opting other vessels into the ensnarlment. Samantha's was already large, four by four centimeters, and was buried unusually deep within the temporal lobe. It had caused symptoms by beginning to hemorrhage, a dangerous situation that could potentially kill her. But an operation to remove an AVM so large, or even to block blood to the area, would be dangerous, Chicago neurosurgeons warned the family. When Samantha's symptoms subsided a week later and she appeared healthy, the physicians told the Lazarinis they were inclined to wait rather than operate.

Even so, the family pediatrician encouraged the anxious parents to seek other opinions. From a list of leading brain specialists, Mr. Lazarini recognized the name of Robert F. Spetzler, M.D., who had been featured in a Reader's Digest article by Pulitzer prize winning journalist and former patient Jimmy Breslin. At once, the Lazarinis sent the films of Samantha's AVM to Phoenix.

Dr. Spetzler has built a career at Barrow Neurological Institute handling seemingly impossible neurosurgical cases. He has pioneered surgeries and employed sophisticated procedures (like cardiac stand-still in which the body's temperature is lowered and the blood stalled) to access the brain. He has published more than 100 journal articles and 80 book chapters on his techniques, and four years ago became the youngest member ever honored by the Congress of Neurological Surgeons. All along, Dr. Spetzler's body of work has included extensive study of difficult-to-treat AVMs.

When he received Samantha Lazarini's films from the Chicago hospital, he saw the AVM was located deep in the brain, near the center of speech. "An operation put her in danger of losing speech and control over the right side of her body," he says. But left on its own, the AVM was a time bomb waiting to go off. Experience told Dr. Spetzler that removing Samantha's AVM would be long and difficult, but not impossible. With confidence, he told the Lazarinis he could help.

Samantha's treatment, beginning in the summer of 1997, involved a three-pronged, highly technical approach. First, Cameron G. McDougall, M.D., performed embolization therapy. Snaking a long, tiny catheter into the periphery of the AVM, he deposited tiny beads that would block the blood flow. Then, a day later, Dr. Spetzler was able to enter the brain surgicaIly, using the guidance of a powerful microscope to track down the edges of the abnormality. After certain blood vessels of the AVM were sealed with bipolar coagulation, a quick electrical current that cuts off the tissue, Dr. Spetzler began to disconnect the tangle, vessel by vessel. It was a tricky undertaking. "They're abnormal vessels, but some contribute to normal brain function, so it's important to distinguish between them and preserve necessary ones," he explains. Though the AVM was embedded in the folds of the brain, he was able to remove 90 percent of the tangle.

Four days later, Samantha headed for the third step: stereotactic radiosurgery, better known as the gamma knife, in which focused rays of radiation halt the errant tissue. Barrow's gamma knife machine is unique in Arizona and one of 24 in the United States (125 exist worldwide). More effective than surgery in curing certain types of brain tumors, it has been applied to other conditions like Parkinson's disease and epilepsy. For Samantha, the gamma knife was able to obliterate the remainder of the AVM. A follow-up MRI showed no tangle.

Just as importantly, Samantha pulled through surgery without trouble. She returned to Illinois with her family and was as healthy as can be for almost two years. But then, just as the ordeal seemed to be past, symptoms of hemorrhaging returned. Such setbacks are not unexpected, Dr. Spetzler explains. "AVMs in children can reappear. Hers grew back with a vengeance."

Samantha returned to Arizona a few months ago, just before her ninth birthday. The recurrence of the AVM was even larger and more diffuse than before, but recent advances in the field improved the stages of treatment. Dr. McDougall repeated the embolization, this time with a new type of "glue" that seals the vessels more permanently than the aggregating particles used in the past. Dr. Spetzler repeated surgery to remove the AVM. It took four separate, meticulous operations over the course of a week to detach the lacework of vessels from the cluster, but the individual, deliberate stages were nothing short of the miracle the Lazarinis had hoped for. "This time we got it all," Dr. Spetzler states. Samantha underwent another aggressive round of gamma knife treatment to destroy any residual abnormal tissue.

She returned home afterward with no lasting complications. Every six months for the next three years, she'll have an MRI to make sure the AVM has not returned, but she can now play like any child and look forward to a young adulthood without the same risk of hemorrhaging. Dr. Spetzler was especially heartened by Samantha's last treatment. "The chance of cure is very high," he says.

After the revolutionary surgery that cured his aneurysm, Derrick Stuckey was back in action.

"Inoperable," was what doctors in Huntsville, Alabama, told 34-year-old Derrick Stuckey about the life-threatening aneurysm lurking in an unreachable area of his brain. The entire circumference of a blood vessel had swelled and threatened to burst. But an operation in that area to clip the troubled vessel bore a 50 percent chance of destroying his vision, paralyzing his left side and even killing him.

But the young emergency medical technician and rodeo rider who owns his own custom carpentry business wouldn't take no for an answer. Instead, he studied all about his condition and sent his MRI films around the country. Though nobody initially had answers, "somebody somewhere had to be able to treat it," he remembers thinking.

His exhaustive research led to neurosurgeon Robert F. Spetzler, M.D., in Phoenix, who turned out to have a similar guiding principle. As Dr. Spetzler puts it: "I don't necessarily believe when people say something can't be done."

Dr. Spetzler had operated successfully on six previous patients with aneurysms similar to Mr. Stuckey's. In fact, he had invented the operation himself and was able to assure Mr. Stuckey a 90 percent chance of coming through the operation without a hitch. In the nine hour procedure, published recently in the Journal of Neurosurgery, Dr. Spetzler took a nearby artery and hooked it up to a new blood vessel beyond the trouble area. "We were the first ever to perform and report this procedure," says Dr. Spetzler.

After the bypass, the artery with the aneurysm was blocked with tiny expanding coils. Within two weeks, Mr. Stuckey was back at work, and just months ago, celebrated his 35th birthday.

Notes Dr. Spetzler: "That's our mandate as a referral center for the world: to come up with solutions to problems that others may never have dreamed possible." For information or referrals: (602) 406-3489

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