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

Contributors: Nirav J. Patel, MD; Rebecca Phelan, DPT; Mitali Bose, MS, CNIM
9 minute read

In May 2022, Jenn Murff, PhD, MA, had just spoken at a conference in Sweden. As she stepped off the stage, she was suddenly struck by the worst headache of her life. She had never felt anything like it before: a squeezing, tight pressure that left her in agony.

As the CEO of an international Christian ministries organization and a busy mom of four daughters, she initially brushed aside her pain.

“I figured it was a migraine. You don’t need to go to the hospital for a migraine,” she says. 

But the terrible pain lingered even after she returned home to Virginia. Eventually, she went to the hospital, where she was shocked to learn she had a severe brain condition called arteriovenous malformation, or AVM, which is sometimes fatal.

Nirav Patel, MD, a Mass General Brigham neurosurgeon, is the director of the AVM Program at Brigham and Women’s Hospital. He is known worldwide for treating the most complex AVMs. Dr. Patel and his team were able to remove Jenn's AVM in a long but successful surgery. Jenn then worked with Rebecca Phelan, DPT, a Mass General Brigham physical therapist at Spaulding Rehabilitation, to complete her recovery. Thanks to their dedicated care and her own determination, Jenn would dodge disaster and return to the life she loves.

AVM diagnosis and treatment

Scans showing the AVM formations in Jenn’s brain.

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.

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. 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.

Jenn Murff, PhD, MA

Mass General Brigham AVM patient

Surgery for AVM: A complicated, delicate procedure

AVM surgeries are complex, delicate procedures neurosurgeons perform under a microscope for greater precision. Neurosurgeons untangle the malformed blood vessels and slowly remove them, one millimeter at a time.

A multidisciplinary team works together to provide care. While the surgical team works in the operating room, other providers monitor progress through an angiogram. Angiograms are special tests that show blood flowing through arteries and veins in real time. This allows the surgeon to adjust course and protect delicate structures of the brain.

Dr. Patel knew that Jenn’s AVM surgery would be difficult. She would also face a long and challenging recovery after the surgery was complete.

“Whenever I see an AVM, the first question I ask myself is: Can I do this? Am I physically capable? If the answer is yes, the second question I ask myself is, should I do this? And the ‘should’ is wrapped up in the other person — the patient. I told Jenn this was going to be a very difficult operation with a high risk for lasting complications,” Dr. Patel explains.

Jenn felt confident in Dr. Patel and the Mass General Brigham team, and decided to go ahead with the surgery.

Personalized AVM care

Mid-sized AVMs can take 12 hours to remove. Jennifer’s was so complex and spread so deeply throughout her brain that it took more than twice that time. Dr. Patel and his team performed 3 individual surgeries over 7 days. Jennifer remained sedated in the Intensive Care Unit (ICU) between each procedure, under constant monitoring from a dedicated nursing team.

During Jenn’s operation, Mitali Bose, MS, CNIM, a Mass General Brigham neuro-physiologist, assisted Dr. Patel. “Neuromonitoring doesn’t take away all risk, but it gives the surgeon a lot more confidence,” says Dr. Patel.

By the end of the third surgery, the team was satisfied Dr. Patel had completely removed the AVM. While the surgeries had taken an enormous toll on her brain — impacting her ability to walk and talk — Jenn was finally ready to heal.

Physical rehabilitation after AVM surgery

Jenn doing physical therapy with Rebecca Phelan, DPT at Spaulding Rehabilitation.

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 with her husband in the Swiss Alps.

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.”

Nirav J. Patel, MD




Rebecca Phelan, DPT
Physical Therapist


Mitali Bose, MS, CNIM