Blindsided by aneurysms, patients hail support group

Ten days after signing the lease on Resurrection Fitness, in Carnegie, Pa., Jeff Donato was found lying in a pool of blood.

At a local hospital, doctors ordered a rush CT scan and, as they were wheeling him into surgery, they told his wife that he had had a ruptured brain aneurysm. A blood vessel in the left side of his brain had ballooned out and burst. He had been lying on his bedroom floor for almost 12 hours. His chances of survival were slim.

Donato, 60, is a personal trainer who lives and works in Carnegie. He has been lifting weights since the age of 8, and he does not smoke, have high blood pressure or use artery-damaging drugs like cocaine. He had none of the characteristics that might predispose him to such an emergency.

Donato knew nothing about aneurysms until he had one. The same goes for most brain aneurysm patients.

“There was no sign, there was no warning,” said his wife, Theresa Donato, 52. “That’s what a lot of people say.”

For the past three years, there has been a support group at University of Pittsburgh Medical Center for brain aneurysm patients and their families. Recently a walk and run was held to raise awareness in the wider community.

Robert Friedlander, chairman of neurosurgery at UPMC, explains that brain aneurysms can be caught before or after they rupture. In patients whose aneurysms rupture, he says, “there’s a ton of blood under high pressure that goes into the brain and causes severe brain damage. A lot of them die on the spot.”

A ruptured aneurysm often manifests itself as the worst headache of your life, he added. “Approximately 50 percent of people die within 30 days.”

But an unruptured aneurysm can go undetected for years.

On Oct. 30, Amanda Tocci was sitting in class at Penn State University preparing for an exam when she began to feel nauseated. She needed to leave.

“As I was walking across the street, I got a black screen in front of my face and my legs kind of gave out,” she recalled.

A friend came and drove her to the hospital. “They kept telling me it was a combination of dehydration and lack of sleep,” she said. “But I’m a very health-conscious person. I drink plenty of water. I knew it wasn’t dehydration.”

When doctors did a CT scan, they saw a blur they thought might be an aneurysm. They confirmed the diagnosis with an MRI. To check if it was ruptured, they did a spinal tap, inserting a long needle into Tocci’s spinal cord to check if blood had leaked into her cerebral fluid. It hadn’t. Her boyfriend drove her home, and early the next morning she was at UPMC, booking surgery with Daniel Wecht for Nov. 19.

“Waiting was the hardest part, knowing there was a ticking time bomb in my head,” said the 22-year-old. Her aneurysm, shaped almost like a flower, was larger than most, presenting an even greater risk of rupture.

One treatment option is to pack an aneurysm full of platinum coils through a catheter. The coils are tiny – not much wider than a hair – but they slow the blood down, encouraging it to clot.

The other option – more appropriate for an aneurysm like Tocci’s – is clipping.

After she was anesthetized, Dr. Wecht fixed her head into position and cut a crescent from her right ear to her forehead, pinning down the flap of skin. Then, using a power drill, he removed a window of skull, putting it into a solution that keeps it clean. With scissors and scalpel, he snipped back the dura, a fibrous layer that protects the brain.

His path was the Sylvian fissure, a natural crevice between lobes. Widening it, he found a map of arteries, first locating the internal carotid, which he could clip in case the aneurysm began to bleed, the way a plumber could turn off a water main. Following the blood vessels through a microscope, he clamped a temporary titanium clip onto the artery that was feeding the aneurysm, and then a permanent one at the neck of the aneurysm. He pricked the dome of the aneurysm with a tiny needle to make sure there was no longer any blood flow, before closing up the wound layer by layer.

Within a month, Tocci was back at the gym, slowly beginning to work out again.

For someone like Donato, whose aneurysm had ruptured, the recovery process is longer. “Nothing I am doing through the surgery is healing the damage done to the brain,” said Dr. Friedlander. “It only prevents the aneurysm from bleeding again, so the brain can heal itself as best it can.”

It took him three weeks to sit up in a chair and many more months to relearn skills the rest of us take for granted. He wore a helmet because the piece of his skull removed during surgery couldn’t be replaced until his brain swelling went down.

The support group at UPMC is important, he said, because it allowed him to share tricks that can help survivors function. Donato might have trouble saying certain words, but he can spell them out. He might not be able to recall a computer password, but he can copy it.

Now, he is back to his weightlifting regimen and is re-teaching himself jazz guitar.