Jenn’s Story: From Brain Surgery to Hiking the Alps

AVMs are a congenital condition, or a condition you’re born with. The condition is rare but can be devastating.

AVMs happen when the capillaries in the brain don’t form correctly. Capillaries are tiny blood vessels that help control blood flow between arteries and veins. In an AVM, malformed capillaries cause blood to build up in the veins. As pressure builds, the walls of the blood vessels can expand like balloons and burst without warning.

When the veins rupture, there’s a risk of permanent brain injury or death. AVMs are the leading cause of hemorrhagic stroke in young people. They can also cause seizures.

Treatment for AVMs can include careful monitoring, or different surgical procedures to remove the AVM, depending on the type and location within the brain. Doctors grade AVMs from 1 to 5, with 5 being the most severe and dangerous type.

Finding the right AVM care team

Jenn was devastated to learn she not only had a large grade 5 AVM, but it was in a location that made it difficult to remove. Her AVM was close to crucial brain structures that control movement, vision, and language. Multiple surgeons around the country declined to operate, saying the risk of complications was too great.

Jenn didn't give up. “I thought, I’m a mom. I have four daughters. I have something to live for. I have a wonderful husband. I have a great career and feel like I’m on a mission,” she says. “I have so much to offer and so much more to do. I can’t die.”

Eventually, she read about a patient who had a similarly challenging AVM, but was successfully treated at Brigham and Women’s Hospital. She contacted the patient’s neurosurgeon, Dr. Patel, who agreed to take on her case as well.

“What I love about Dr. Patel is he was very honest. He didn’t sugarcoat anything. Although you can’t always foresee complications, I knew what I was getting into, and that Dr. Patel was the right surgeon for me. I had such peace that I was going to be OK at the end of this,” Jenn says.

Jenn’s recovery was as challenging as her surgery. She faced complications from the initial surgeries and wound up going through 10 different surgeries in total. At Spaulding Rehabilitation, Jennifer performed inpatient physical therapy for more than 3 months. She later completed additional inpatient physical therapy back home in Virginia.

“The hardest thing was realizing that I was going to have to regain some cognitive functions. My brain is the fabric of my personality, my career — everything,” Jenn says. “I remember after surgery wanting to call my husband, but I couldn’t figure how to put my password into my phone. I started weeping. ‘Is this what I signed up for? I signed up to be healed.’ I decided right then to pull myself together, and my faith played a huge role in that because I believe God was in the operating room with Dr. Patel.”

Jenn’s strength and determination left a lasting impression on her care team. Rebecca Phelan, DPT, a Mass General Brigham physical therapist who cared for Jenn at Spaulding Rehabilitation, was moved by Jenn’s dedication.

For Rebecca, helping her patients regain their mobility and independence isn’t just about moving the body. Her goal is to help them find their own strength within. This seemed to resonate with Jenn, too.

“I can still remember the feeling of walking into Jenn’s room for her treatment sessions. She exuded such positivity and remained so motivated for our therapy sessions, even when I knew she was exhausted,” Rebecca says.

Life after AVM

Jenn pushed herself through the setbacks and gradually relearned how to walk and talk. She’s now living a full life again. She recently participated in a conference where she shared her new perspective on the importance of resilience.

Jenn also enjoys spending quality time with her husband and daughters. The family even hiked the Swiss Alps together just 8 months after her last surgery. She credits the expert care she received from Mass General Brigham, from Dr. Patel and his team to Rebecca and the dedicated physical therapists at Spaulding, for treating her with respect and compassion.

“The people at these hospitals weren’t just providing a service to me. I love them, and I hope they felt seen just like they made me feel seen and cared for,” she says. “When you’re dealing with issues of the brain, you just need your dignity. And I felt like I maintained my dignity at every stage, whether I was at Brigham or Spaulding. That was really special.”