“As soon as we heard the word surgery, we were like, ‘no, there’s not going to be brain surgery for our daughter,’ ” recalls Michele Craparo of Endicott. She did not want to believe her daughter was sick enough to require such drastic measures.
Her daughter, Lily was a perfectly healthy 2 ½-year-old when she went to bed March 11. Sometime in the night, her brain began a quiet but destructive seizure, which wracked her body into dawn that Saturday. Her parents heard what sounded like choking and came running. Lily couldn’t speak or walk. Her left side was paralyzed.
Doctors at the Binghamton hospital transferred her to Upstate Golisano Children’s Hospital, where the Craparos learned Lily had epilepsy, and specialists set out to determine why. The term “epilepsy” describes seizures that are not related to a medical condition such as low blood sugar. Some children are born with epilepsy; it can also develop because of cerebral palsy, head injury or brain tumor.
Lily suffered seizure upon seizure while Dr. Yaman Eksioglu, a pediatric neurologist specializing in epilepsy, tried different medications and dosages. Six days into the crisis, the seizures were finally under control. But doctors remained concerned.
The medication’s effectiveness was likely to wane, Eksioglu told the Craparos, and Lily’s seizures were so severe, they might cause permanent damage to the healthy parts of her brain. He and Dr. Zulma Tovar-Spinoza, director of pediatric neurosurgery, proposed surgery.
It would be the first pediatric epilepsy surgery done at Golisano, but both doctors had experience in the procedure, Eksioglu at Children’s Hospital in Boston, and Tovar-Spinoza at the Hospital for Sick Children in Toronto. They had come to Syracuse intent on offering epilepsy surgery to children throughout Central New York.
The prospect was scary to the Craparos, both of whom are teachers – Charles in 8th grade special education, and Michele in kindergarten. Lily is the baby of the family to big brothers Christian, 6, and William, 5. She was born precocious and vibrant. They worried if removing part of her brain would change that. They worried if declining the surgery was even riskier.
“We were pushed so many times to go to a bigger hospital,” Michele Craparo says. “But I knew we were in the right place.” She and her husband were impressed that the doctors wanted not only to control Lily’s seizures but to preserve the little girl’s quality of life and developmental abilities. And they understood that meant acting quickly, to minimize any damage.
Between 25 percent and 40 percent of children with epilepsy have what’s known as a focal lesion, one spot from where the seizures originate. Between 5 percent and 10 percent of those patients may be candidates for surgery, which has a success rate of 85 percent for curing the seizures and improving the patient’s quality of life but comes with the risk of infection, stroke or bleeding in the brain, Tovar-Spinoza says.
The process involves a series of diagnostic tests and scans, two trips to the operating room and several harrowing days during which several dozen to a few hundred electrodes would reside on Lily’s brain, recording the seizures to help doctors pinpoint the origins. But first, the child would need to let her brain rest, and regain her strength through physical therapy.
She couldn’t stand on her own when she arrived at Upstate. She was walking by the time she underwent surgery, but her left arm remained partially paralyzed.
The first operation, on April 25, revealed a brain tumor called meningioangiomatosis. It was not cancerous, but it would have to be removed in order to stop the seizures.
Lily remained in her hospital bed for four days while doctors tracked the activity in her brain. “She looked normal on the outside, but on the inside she was having these seizures,” Michele Craparo describes. “They learned a lot of information from that.”
Using data from the electrodes and the previous tests, Tovar-Spinoza and Eksioglu came up with a strategy for reaching and removing the tumor and the areas that created seizures on Lily’s brain. They mapped a path to follow, to minimize damage, and they took Lily back to the operating room.
“We were ready for her to be in a wheelchair. We were ready for her to wake up and not know us,” Craparo says.
Instead, Lily awoke from surgery insisting that nurses put on her diaper — and lifting her left arm, the side that had been paralyzed.
The Craparos had their sweet, sassy daughter back. And she wasn’t having seizures anymore.
Lily will take anti-seizure medicines for at least the short-term, to be safe, says Charles Craparo. But thanks to the doctors at Upstate, he says, “long term, she should be able to live a normal, healthy productive life.”
–Reach Dr. Yaman Eksioglu through the Department of Neurolgoy at 315-464-4243. Reach Dr. Zulma Tovar-Spinoza through the Department of Neurosurgery at 315-464-4418.
Seizure surgery process
Children as young as a few weeks old may be candidates for epilepsy surgery if anti-seizure medicines prove ineffective, or if side effects are intolerable. A series of tests are part of the epilepsy surgery process, including:
- EEG — electroencephalograms to show the electrical activity in the brain cells, and electrodes placed directly on the brain provide precise information about the brain’s electrical pathways, without interference from hair, skin and bone.
- MRI – various types of magnetic resonance imaging to show detailed pictures of the brain and metabolic changes taking place in the active parts of the brain, plus functional imaging to localize the areas with important cortical functions
- PET — Positron emission tomography, which provides 3-dimensional cross sectional images
- SPECT – Single photon emission computer tomography to reveal the more active and less active parts of the brain
- Motor and sensory mapping, done to help pinpoint which actions are controlled by which part of the brain