Back from the brink: Bryan’s life-threatening brain AVM

BryanThomasHeadShot

Ed. note: This is an updated version of a post that originally appeared in January.

Bryan Thomas doesn’t remember what happened at the eighth-grade graduation party in June, the night he almost lost his life. He knows only what he’s been told.

He was celebrating at a sleepover that Saturday night when he leaned over to his friend and said, “I have a headache.”

“My friend asked if I wanted an Advil, but I said I would tough it out,” Bryan says.

Two or three minutes later, he told his friend the headache was getting worse. He took three ibuprofen, but soon sat down and said, “I can’t go on.” He began rocking back and forth, saying how scared he was.

Then he threw up and passed out.

A ticking time bomb

Bryan’s parents were at a wedding on the Cape. “I got a call at 1 a.m.,” says Jennifer, his mother. “I had only one percent battery on my phone — let that be a lesson.”

Bryan was on his way to South Shore Hospital. As the Thomases sped to meet him, an emergency room doctor called. “How long until you get here?”

The meaning was clear: Get ready to say goodbye to your son.

Jennifer was shocked when she saw Bryan: His eyes were open, facing in two different directions. He had an arteriovenous malformation (AVM) in his brain — a tangle of blood vessels that were abnormally connected, forcing high-pressure blood into the veins. He probably had it from birth, and an overtaxed vein had finally burst, causing massive bleeding and swelling inside his head.

“The nurses were comforting us. I was wailing, and my husband was praying,” Jennifer says.

Boston Children’s Hospital had already sent an ambulance and transport team. They rushed Bryan on board and sped off in the rain. Though it was normally a 35-minute ride, they reached Boston Children’s in 19 minutes. A large team was waiting and whisked Bryan into surgery.

The nurses were comforting us. I was wailing, and my husband was praying.

It was 3 a.m. Within 30 minutes, all of Bryan’s brain functions could shut down.

Dr. Kristopher Kahle, the neurosurgical fellow on duty, inserted drains to relieve the dangerous swelling and pressure on Bryan’s brain. He also called Dr. Edward Smith, a vascular specialist and co-director of the Cerebrovascular Surgery and Interventions Center. At home and scheduled to fly to Germany at 7 a.m., Smith rearranged his flight and scrubbed in.

Stabilizing Bryan’s vitals

Smith carefully removed a large blood clot that was further compressing Bryan’s brain. But the team couldn’t safely tackle the AVM because of Bryan’s fragile condition.

“He was close to being dead, quite frankly,” says Smith. “The first goal was to help him survive the night. The AVM wasn’t very large, but it was in a very dangerous location. At that point we really didn’t understand its full anatomy. We spent a lot of time taking pictures and figuring out next steps.”

At 9 a.m., Smith came out from surgery with hopeful news: Bryan’s vitals had stabilized, though he was still in critical condition.

Before weaning Bryan off the anesthesia, neuroradiologist Dr. Darren Orbach imaged the AVM’s blood vessels one by one to make sure there were no remaining aneurysms — weak spots that could rupture and bleed. Finding another vessel wall at risk of blowing, Orbach guided a small catheter to it — all the way from Bryan’s groin — and injected a special glue to seal the spot shut.

The AVM itself still remained — for now.

“Bryan, can you hear me?”

For several days, Bryan lay unconscious and intubated in the intensive care unit. “Doctor after doctor would come in and ask loudly, ‘Bryan, can you hear me? If you do, squeeze my finger,’” says Jennifer. “And then, nothing.”

On July 1, Wednesday, Bryan squeezed her hand for the first time but didn’t rouse.

Bryan’s left side appeared to be fully paralyzed, but his right side was showing a big fight — especially his leg, which thrashed in agitation as he drifted toward consciousness. One of the ICU nurses put up a sign: “I have a very strong right leg. Please be careful when leaning over me!” With his right hand, Bryan tried to pull out his drains. He succeeded on one occasion, requiring a return to the OR.

On July 4, he opened his eyes. The nurses asked, “Do you see your mom?” He nodded yes.

AVM Bryan
A recovered Bryan with Orbach (left) and Smith

Bryan’s first memory is this: “My eyes were closed and my parents were reading me cards people had sent. I remember opening my eyes and having no idea why I was lying in a hospital bed.”

On July 17, the nurses sat Bryan up for the first time. On July 21, he was moved out of the ICU. He began eating and mouthed his first full sentence: “I’m very tired.” His friends began visiting.

On Aug. 5, it was time to remove the AVM.

A ball of yarn

For 14 hours, Smith and Orbach worked in tandem. First, under high-resolution imaging, Orbach went in with a catheter and used a combination of glue and coils to seal off the blood vessels feeding the AVM.

“My goal was to get rid of as much of the blood flow as possible to help Dr. Smith do a safe operation,” says Orbach, who co-directs the Cerebrovascular Surgery and Interventions Center with Smith. “As I shut the flow down, it became clear this was a complex AVM.”

“It was like having a ball of yarn with several strings I needed to leave alone,” elaborates Smith. “You can’t really untangle them; you have to gently dissect and operate on them one by one.”

Guided by the images and looking directly at the AVM with a microscope, Smith gradually found the “bad” vessels and pinched them off with tiny clamps, allowing him to safely remove the AVM. Orbach’s final images confirmed this.

Homecoming day

Bryan recovered quickly from the second operation. With intensive physical therapy, his left leg began functioning again. He was discharged on Aug. 11 and spent a month at Spaulding Rehabilitation Hospital.

On Sept. 11, he arrived home to find that his friends had decorated his town of Cohasset in his honor — all the way to his house.

AVM

Bryan continues to make huge strides every day. He has has been left with some weakness on his left side, and his vision is restricted on the left side in both eyes. But he is jogging a mile a day and is starting to get some movement in his left hand. As of February, he’s back to school full time.

Having ranked at the top of his eighth-grade class, Bryan has his sights set on Stanford University. He and his mother joke that his experience will make a great college essay.

“His attitude has been amazing, he’s so optimistic and so incredibly determined,” says Jennifer.

Bryan credits the support of his friends and family. “This experience has really reinforced for me the importance of values such as companionship, hope and moral support.”AVM

Learn more about cerebrovascular care at Boston Children’s.