Brain Tumor Treatment Heals Rare Heart Condition

Serendipity may have saved 32-year-old Jamie Arliss’ life. A rare tumor discovered in her heart had cardiologists stumped. They wanted to remove the mass, but traditional techniques failed because of its size and location. A heart transplant was under consideration; that is, until a neurosurgeon suggested treating it like it was a brain tumor.

“This was an extraordinary tumor in the heart. So unusual, so rare that we couldn’t find any information about how to treat it anywhere in our extensive research,” said Christopher Cove, M.D., assistant director of the URMC Cardiac Catheterization Laboratories. The only information available came from autopsy reports when similar growths had been discovered, but they offered no clues on treatment.

Fortuitous discussions between Cove and a neurosurgeon introduced the idea of treating the tumor in Arliss’ heart as they treat similar masses in the brain – using liquid embolization to stop the tumor in its tracks.

“This was all new ground for us and we’re pleased that we’ve been able to stop the growth of that tumor without any negative impact on her heart,” Cove said. “We expect Jamie will be able to enjoy a good quality of life as she continues her recovery.”

Experts believe the procedure was the first time this substance and technique was used in the heart.

Cardiothoracic surgeon H. Todd Massey, M.D., studied the images captured when the tumor was discovered late in 2008.

“It was nothing I’d ever seen before,” said Massey, senior transplant surgeon for the Program in Heart Failure and Transplantation. Initially concerned the tumor was cancerous, a March 2009 biopsy proved otherwise and Massey identified it as an arterio-venous malformation (AVM). More often seen in the brain or lungs, AVMs can form anywhere in the body. Arliss’ grew to the golf-ball size along the lateral wall of her heart.

Removing Arliss’ AVM surgically would damage too much heart muscle so Massey suggested that interventional cardiologists use coil embolization to starve the tumor.

“That was unsuccessful because if you cut off one blood supply, it was able to find another one to let the tumor continue to grow,” Cove said. Arliss’ tumor was complex and deeply rooted in her heart.

The life-threatening tumor kept growing, eventually reaching 3.5 centimeters and spreading outside of the left ventricle and into the pericardium.

Stymied as to how best to treat the AVM, cardiologists reached out to colleagues across the country for advice. They shared the initial images of the mass, which were published in the Journal of the American College of Cardiology in April 2010. While there was curiosity about the discovery, none of their peers offered suggestions for a cure.

Unlikely Pairing of Specialists

At the same time, due to renovations, neurosurgeon Babak Jahromi, M.D., Ph.D., had temporarily moved his clinical suite into the cardiac catheterization center where Cove and his colleagues observed Jahromi’s techniques for treating brain disorders. Jahromi regularly treats cerebral AVMs by using a tiny catheter to inject Onyx, a glue-like substance, into the tumor to shut down the vascular growth and destroy the vessels. Intrigued, Cove and Jahromi began studying the possibility of using the same substance to destroy the mass in Arliss’ heart.

“We decided to talk with the neurosurgeon next door because they have experience in treating these types of tumors in the brain,” said Cove. “We all use the minimally-invasive catheterization techniques to treat diseases and it was a great opportunity for cross fertilization between the two specialties.”

Jahromi knew there would be a learning curve working in a cardiac surgery instead of the neurosurgery lab with a patient who is lying still under anesthesia.

“This was a completely different ball game for me,” said Jahromi, assistant professor of Neurosurgery, Imaging Sciences and Neurology. He typically uses the liquid embolization procedure to treat masses that are measured in millimeters, rather than centimeters or inches. The massive heart tumor required the use of 10 times the amount of Onyx than would normally be used in the brain. Onyx is coated with metal flakes that allow physicians to follow the flow of the liquid and see that it reaches the target location. It hardens quickly and immediately shuts off the blood supply, destroying the mass.

“It was a beating heart that continues to move as you insert the catheter and deliver the therapy. And we did it all while the patient was awake. But that’s what the cardiologists do, so both of us working together we were a good combination,” Jahromi said.

Repeated imaging tests following the December 2010 procedure showed the Onyx filling the space where the tumor was, and no additional activity at the site. Now, it is an inert mass that will no longer draw blood from Arliss’ heart. It could remain there for the rest of her life, though it will not impair her heart function, Cove said.

Doctors continue to monitor Arliss’ recovery and heart function and will study what happens to the now-dead mass in her heart.

Stumbling Onto a Diagnosis

Discovery of the tumor in Arliss’ heart came by accident two years ago. Arliss, a licensed practical nurse, was working at a medical practice near her hometown of Clyde, N.Y.  At the time, the staff was learning to perform electrocardiograms and practicing on each other. When it was her turn, the test results were “a little odd and everyone said it was probably nothing,” she recalled.

Arliss suffered progressive fatigue as the tumor grew larger, reducing the capacity of her heart. She couldn’t exercise or complete tasks that required significant physical activity. She suspected something was wrong, but her doctors couldn’t find anything unusual.

“I always felt tired and short of breath, and I’d get chest pains sometimes. My doctor would order blood tests and they’d come back normal every time,” said Arliss. “I quit smoking, started taking vitamins more regularly and paying attention to myself but it continued.”

After the unusual EKG, Arliss couldn’t ignore the results and she was persistent in finding out why. “I’m a worrywart and couldn’t let this go.”

Thus began a two-year journey that took many twists and turns as she found the road to recovery. Arliss is regaining strength and endurance and has returned to work in the medical office.

“We’re very pleased that Jamie will have no long-term effects from this procedure,” Cove said. “She’ll move on and enjoy a good quality of life from here.”

For information or referrals to the URMC For urgent neurosurgery referrals or consults, please call our Brain and Spine Line at (585) CALLRNP (225-5767).

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