WASHINGTON — She was an energetic little girl who liked nothing better than to dive into a pool with her swim team. Then the pain started
“I felt like a monster was eating my leg,” says 10-year-old Niyati Shah, of Nokesville, Virginia, remembering the awful months when a benign leg tumor called an osteoid osteoma kept her out of sports and up at night in agony.
Her mom remembers the fear and the helplessness of watching her child in such pain, wondering if there was any way to get her any relief.
“It would hurt on touch,” says Nita Shah. “Nothing would help — no cold pack, no ice pack — she would be in tears every night.”
Her parents went from doctor to doctor, searching for answers. What they found was a study at the Children’s National Health System, where researchers were looking at an alternative to standard surgery for osteoid osteoma.
Instead of cutting the tumor out of the bone, or using a needle inserted in the tumor to ablate — or burn — it, they wanted to try something revolutionary, a procedure that had never been used on a child in the United States.
“It is really, truly noninvasive,” says Dr. Karun Sharma, the interventional radiologist who leads the clinical study. This new procedure — already tested in Italy and Canada — involves using high intensity targeted sound waves to destroy the tumor.
“It was Dr. Sharma who actually gave us hope,” remembers Nita Shah.
In the end, it was the painless incision-less nature of the procedure that won her over.
In March, Niyati and 16-year-old Afredo Coreas, from D.C., became the first kids to get their bone tumors removed at Children’s using MR-HIFU — an MRI machine that is integrated with high intensity focused ultrasound.
The MRI guides the medical team as they focus sound beams at a very small pinpoint on the tumor. The ultrasound then heats the spot and destroys the growth.
“There is no ionizing radiation involved, there is no scalpel, there is no needle — and that is why I think this is a great procedure for children,” says Sharma
Right now, they are using it only on patients with osteoid osteoma, which is fairly common in children and teens. But Sharma says the potential is enormous, noting it is already being used in adults to treat uterine fibroids, and is being studied as possible treatment for different kinds of malignancies.
At Children’s National Health System, in addition to the osteoid osteoma study, researchers are looking into the ability of MR-HIFU to improve treatment for various types of kid cancers, focusing initially on young patients whose tumors have reoccurred after chemotherapy and radiation. Sharma says his research team is looking at the procedure not just as a possible way to remove malignant tumors, but to also boost the effectiveness of drug therapies.
The first two patients to get the treatment for osteoid osteoma — Niyati and Alfredo — remain the pride and joy of the MR-HIFU research team. Both are back at school and enjoying their favorite sports.
“It was like a dream come true,” says Nita Shah.
Her daughter takes the fact she made medical history in stride. Asked how she is feeling after the procedure destroyed the tumor in her leg, Niyati thinks for a second and says, “I am a flying butterfly now! I have never felt more free!”