In March 2022, Chloe Hermansen, then 23, began to feel her pulse in her right eye.
She’d always had migraines, dating back to when she was first diagnosed with an unusual malformation of blood vessels in her face, when she was 5.
But now, chewing was excruciating. Even lying down hurt. The combination of the pain and the pulsating eye was disabling.
When doctors could do nothing to help, she gave up her job as a stylist in Dallas and moved back in with her mom in Missouri.
“It was depressing. It was just awful not feeling like myself and being able to get out and do anything,” she said.
That summer, after months of pain, Hermansen stumbled across the name of a doctor at Northwell Lenox Hill Hospital in New York who specialized in her type of venous malformations. Her scans were sent to New York and doctors were shocked by what they saw.
The skull bone behind Hermansen’s right eye was gone. In its place was a hole, allowing her brain to press against the eye, which explained the pulsating, said Dr. Netanel Ben-Shalom, a neuroplastic surgeon at Northwell.
Over two decades, the consistent pressure from Hermansen’s venous malformation had eroded the bone down to nothing – like how flowing water carves channels into bedrock.
“If you think about the eye as the basement and the brain as the first floor, she didn’t have a ‘floor’ to the skull,” Ben-Shalom said. “The brain pretty much sagged from the first floor to the basement.”
What is a venous malformation?
A venous malformation is a cluster of abnormal veins that typically forms in the face or neck area, said Dr. Teresa O, who specializes in facial plastic and reconstructive surgery at Northwell.
“It’s like a bag of worms,” she said.
Venous malformations are rare, affecting up to 1 in every 5,000 people, according to the Cleveland Clinic. Most don’t have a clear cause. In Hermansen’s case, doctors said she was likely born with it.
Doctors consider most venous malformations benign. If they’re small and don’t cause functional issues, they may recommend actively monitoring them without treatment.
Some patients undergo sclerotherapy, a medication injected directly into the malformation to shrink or close off the abnormal veins, according to Cincinnati Children’s Hospital. Hermansen received several rounds of it throughout her teenage years to no avail.
By the time she saw O, Hermansen’s “veins were dilated and infiltrated within the tissues.” They had invaded the jaw muscles that lined the right side of her face, from below her cheekbone up to her temple.
If left untreated, Hermansen could have suffered from cognitive problems and possibly vision loss, Ben-Shalom said. But he knew treatment wouldn’t be easy.
Treatment and recovery
Hermansen’s first surgery took place in December 2022. O removed the affected jaw muscles, including the temporalis and masseter muscles, fat tissue and the rest of the venous malformation. She replaced the missing tissue with a fat graft from her abdomen and reshaped the cheekbone, so it matched the left side of her face.
Once the venous malformation was removed, it was Ben-Shalom’s turn to address the hole at the bottom of Hermansen’s skull.
His lab printed a replica of her skull and an implant would fit perfectly into the hole where her cranial floor should have been. With the puzzle piece in hand, Hermansen’s final surgery was scheduled for March 2024.
Ben-Shalom pushed the brain out of her eye socket and back into the correct position in her skull. He cut out the diseased bone eroded by the venous malformation. Finally, he reconstructed the skull with the 3D-printed implant.
Since her surgeries, Hermansen’s “excruciating” pain has vanished.
She’s been recovering at her mom’s house in Missouri but plans to return to Dallas within the next month. She’s excited to start work and “get back to normal activities.”
“I feel like a new person,” she said.
Adrianna Rodriguez can be reached at [email protected].
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