Cerebrovascular Surgery and Interventions Center | Patient Stories
Jack: My AVM story
For rugby player Jack Bull, a fourth concussion led to the discovery of an even bigger problem: an arteriovenous malformation (AVM) in his brain. “We joke that my fourth concussion saved my life,” he says.
Fighting for Kennedy: Coping with moyamoya disease
When Kennedy was diagnosed with a rare but serious condition called moyamoya disease, her parents knew they had to fight for her. Their journey brought them from Texas to Dr. Edward Smith and the Moyamoya Disease Program at Boston Children’s Hospital.
The closest of calls: Infant's DSM cured with life-saving brain procedure
When Madelyn was 5 months old, she contracted an illness that her parents and pediatrician thought was just a bad virus. But it wouldn’t go away, and a visit to the ER led to a rare brain diagnosis and an urgent procedure at Boston Children’s Hospital.
Father and son find unexpected connection
Matty Siegrist was having trouble walking and talking because of cavernous malformations, a genetic condition he shares with his dad. After surgery to remove a large malformation, Matty is back to running and playing like a typical two-year-old.
Back from the brink: Bryan’s life-threatening AVM
Bryan Thomas was rushed to the emergency room with a bleeding arteriovenous malformation (AVM) in his brain. Quick but careful teamwork defused the “ticking time bomb” — safely removing the AVM and saving his life. Four years later, Bryan writes about his recovery and the impact Boston Children’s has had on this journey.
Parents-to-be travel to Boston for their son’s vein of Galen malformation
A prenatal ultrasound found a vein of Galen malformation in Alex Martin’s brain that threatened to compromise his heart function. Alex’s parents drive 17 hours from South Carolina for his delivery and eventual treatment — guided by a 3D-printed model of his malformed vessels.
Brain hemorrhage threatens to put a hockey career on ice
Wyatt Schlaht and his dad were driving to hockey practice when he suddenly had a seizure. A cavernous malformation, a mass of blood vessels in his brain, had caused a large blood clot. Neurosurgeons at Boston Children’s used stereotactic navigation — an image-guided GPS-like system — to safely remove the clot and the malformation. Wyatt is now back on the ice.
3D printing guides a tricky brain surgery
Two years ago, Adam Stedman had a seizure out of the blue. It was caused by an arteriovenous malformation, or AVM, a tangle of abnormally connected arteries and veins. His neurosurgeon, Ed Smith, MD, wanted to rehearse the tricky operation to remove it in advance. That’s how Adam became one of the first patients to have his blood-vessel anatomy reproduced through 3D printing technology. His one-year follow-up angiogram, at age 17, was completely normal.
My sister couldn’t be tamed by a brain hemorrhage
Pedaling her stationary bike, 14-year-old Carly Coughlin felt a sharp pain in her head and quickly became lethargic and unresponsive, in extreme pain. An arteriovenous malformation (AVM) had burst and hemorrhaged in her brain. Medflighted to Boston from Cape Cod, Carly had the AVM safely removed. Eight weeks later, with well wishes from Tom Brady, she was back in school with aspirations to be a neurosurgeon.
Relieving the pressure: Yousef’s vein of Galen procedure
When Yousef was two days old, a doctor burst into his mother’s hospital room in Kuwait City to tell her that he had high pressure in his heart. An echo showed nothing in his heart, but found a vein of Galen malformation deep in his brain. Two hospitals in France and England said they could operate only after his first birthday. Boston Children’s treated him much sooner, with a catheter-based technique.
Rolensky’s story: Saving his heart by fixing his brain
Rolensky was flown from Haiti to Boston Children’s with a failing heart. But there was nothing structurally wrong with his heart. Instead, he had a rare blood vessel abnormality in his brain: a vein of Galen malformation. A procedure called embolization closed it up and relieved the stress on his heart.
