Deanne and Gerald Iacono thought their 2 ΒΈ year old son was only dizzy when he'd cover his eyes and say, "Mommy, I'm turning."
Because his hands were over his face, they did not see his eyes jerk from side to side, and the "dizzy spells" lasted only a few seconds.
Philip was lucky in a sense. If the unusual mass that was growing in his brain had been detected right away, radical surgery probably would have cost him a significant portion of his visual field for the rest of his life. As it turns out, the tumor was growing slowly, and the delay in diagnosis allowed medicine and technology to advance. As a result, Philip had a much better outcome than he probably would have had a mere seven years ago.
The early dizzy spells were unpredictable, according to Deanne. "It would happen occasionally, maybe once every three months, then twice in a month, then it wouldn't happen for six months. It was really hit and miss."
When Philip, the couples' first of three children, was about 4, Deanne took him to a pediatrician to ask specifically about these odd episodes. Philip performed fine on the standard "touch-your-finger-to-your-nose" neurological tests, and because there were no other symptoms to go on, the doctor and the family assumed Philip sometimes got dizzy from leading an up-and-down, running-around boyhood.
"From about the age of 5 to just before he turned 7, the symptoms completely stopped," recalls Deanne. "We didn't really think about it and figured that whatever it was, he outgrew it. Then he had a fall. He was almost 7 and he had a fall off a Jungle Gym and landed right on the back of his head. He was stunned for about 10 minutes and then he was fine. But later that week he came home and said, "Mom, I had one of my dizzy spells."
This was the first episode in about two and a half years. Another came a short time later. This time, for the first time, the family witnessed it. Philip's eyes suddenly began to dart rapidly from side to side.
Deanne and Gerald initially thought the eye movements might be caused by an injury sustained in the playground accident, but then they began to link them to Philip's earlier dizzy spells. The episodes started coming three, four, even five times a day, and an MRI revealed an area in the back of the brain that doctors thought looked suspicious. "They said, 'This doesn't look like it's from a fall. It has been there. It could be a brain tumor,'" says Deanne.
A neurologist informed Deanne and Gerald that Philip's "dizzy spells" were actually seizures. The doctor prescribed anti-seizure medications, which ended the episodes immediately. Meanwhile, an MRI with spectroscopy was performed as Philip's doctors worked to diagnose the suspicious spot in his brain and determine the best way to deal with it.
The family was referred to other physicians and surgeons who reviewed the films from the scans, suspected the mass was growing larger and settled on an aggressive approach to surgically remove it. Because it was located tight against the visual cortex, Philip would likely lose a significant portion of his peripheral vision permanently.
Even as surgery was being scheduled, Deanne and Gerald were having second thoughts. If the tumor or malformation had been in their son's brain throughout his life, as doctors believed, why was there now a sudden need to rush in, even without a biopsy to determine the exact nature of the mass?
Deanne placed a call to Cedars-Sinai's Maxine Dunitz Neurosurgical Institute to see about getting a second opinion. She had read about the founding of the Institute a few years ago and knew of the reputation of its director, Keith L. Black, M.D. She was surprised to learn, however, that the Institute had launched a pediatric neurosurgery program. She was even more surprised when, after a short wait on the phone, she was speaking with the director of that program.
"Dr. Danielpour was there and he got right on the phone with me," she recalls.
Pediatric neurosurgeon Moise Danielpour, M.D., who joined the Institute in 2000, told her the team would gladly look at Philip's scans.
"We urged a more conservative approach," says Dr. Danielpour. "Brain tumors in children are different than those in adults and the treatment may be vastly different. In children, tumors tend to be low-grade and slow-growing, and we often have more treatment options. In Philip's case, we first did a biopsy to establish that the growth really was a tumor."
Deanne remembers getting the results of that November 2001 biopsy. "We had the best news in that it was the lowest, lowest grade you can get," she says. "They decided, 'Let's just wait, there's no rush. We're just going to keep monitoring it and then take it out in the summer.'"
On June 24, 2002, Dr. Danielpour and Dr. Black surgically removed nearly all the tumor, using "brain mapping" technology that was not available when Philip first starting having his "dizzy spells."
"We wanted to take the tumor out but we also wanted the child to be left with good function," says Dr. Danielpour. "With such a low-grade, slow-growing tumor, there are not well-defined edges that make it easy to see where the tumor stops and healthy tissue starts. Therefore, we used magnetic resonance guidance and ultrasound to tell us what to take out and what to leave alone. Because of this, we were able to take out more than 95 percent of the tumor, and Philip's vision is completely intact. Without this new technology, that would not have been possible."
With the increasing precision of imaging and surgical technology, combined with a better understanding of certain types of tumors, physicians can now "manage" some conditions over the course of years. As Dr. Danielpour says, "Rather than rushing in to remove everything and destroy healthy tissue and function, neurosurgeons can sometimes take a more conservative approach."
Deanne says the family "couldn't believe" how quickly Philip recovered from surgery and wanted to resume his normal routine. He was out of the hospital on the second day after surgery. Two days later he said, "Mom, I'm bored. I want to go swimming."
He will have MRIs to monitor the site of the tumor, and in the unlikely event that the tumor comes back, surgery may be needed again someday. In the meantime, Philip enjoys a normal childhood with normal vision.
Philip turned 9 in May -- after the biopsy but before the removal of the tumor -- and instead of birthday gifts, he requested donations to the research program at the Maxine Dunitz Neurosurgical Institute. With family and friends contributing, Philip's parents presented the doctors with $2,000 during a recent visit. Cells from Philip's tumor will also be used in Institute research.
Cedars-Sinai Medical Center is one of the largest nonprofit academic medical centers in the Western United States. For the fifth straight two-year period, it has been named Southern California's gold standard in health care in an independent survey. Cedars-Sinai is internationally renowned for its diagnostic and treatment capabilities and its broad spectrum of programs and services, as well as breakthrough in biomedical research and superlative medical education. Named one of the 100 "Most Wired" hospitals in health care in 2001, the Medical Center ranks among the top 10 non-university hospitals in the nation for its research activities.
RSS