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Having Major Brain Surgery During COVID-19

When Paula lay down to sleep one night, she heard a loud rushing sound in her right ear. It sounded like the crashing waves of the ocean. The unusual sound began in January, shortly after the 72-year-old had moved into her new condo in Rhode Island. After a week, Paula started joking that it was just her imagination. In February, the rushing sound suddenly vanished.

Still, Paula didn’t want to take any chances. She visited her primary care provider, who thought the sound might involve a narrowing of the artery that sends blood to the brain. Her doctor ordered an MRI to examine the tissues in her neck and head. It was a Friday night in early March when Paula’s world turned upside down. Her doctor entered the room and told her the results of the MRI: “We found a mass in your skull.”

A Meningioma Diagnosis

Located behind her right eye, the mass in Paula’s brain was diagnosed as a sphenoid wing meningioma, a type of tumor that develops in the membrane surrounding the brain and spinal cord. Meningiomas are the most common type of brain tumor, accounting for more than 1 in 4 brain tumors. Ninety percent of meningiomas are benign.

Since meningiomas are slow growing, Paula likely had hers for years without knowing. It remains unclear if the tumor was related to the sound in Paula’s ear. “Either way, they weren’t looking for this mass,” she says. “I was shocked that they found it.”

As meningiomas grow, they can put pressure on the brain and cause many serious symptoms, including headaches, weakness and seizures. The most common—and often curative—treatment for meningioma is surgery. Because Paula’s meningioma was located at the base of her skull, it would be more challenging to remove.

The Decision to Undergo Major Surgery During COVID-19

Five days before Paula’s diagnosis, Rhode Island recorded its first two cases of COVID-19. In the coming weeks, schools were shut down, followed by churches and restaurants. Meanwhile, Paula entered the two most critical months of her life. She had to decide where to have surgery to remove her meningioma. “In times of struggle, my natural response is to reach out to people,” says Paula. “So, I started a network.”

Having recently retired from a career in the Rhode Island State Government, Paula reached out to former colleagues, as well as neighbors and friends. “I considered many factors, but one of the things that weighed heavily on my mind was the aftercare,” says Paula. She wanted a hospital that was known for both its technical skill and low infection rate after surgery.

Two physicians, one of whom was a personal friend, recommended Omar Arnaout, MD, a neurosurgeon in the Brain Tumor Center at Brigham and Women’s Hospital. Paula arranged a virtual visit with Dr. Arnaout and liked him right away. Dr. Arnaout’s knowledge and confidence put her at ease. He explained that the surgery should happen relatively soon because of the size and location of her meningioma.

The COVID-19 pandemic complicated her decision, though. At the time, Boston had become a hotspot for the virus. “This period of uncertainty was the most terrifying part of the experience,” says Paula. “I was doing so much research because I knew my four grown kids would have a million questions. I wanted my decisions to relieve their concerns as much as possible.”

Like Paula, her children responded to the news by reaching out to their own networks. The consensus was clear—the Brigham was widely recommended for brain surgery. Paula contacted Dr. Arnaout’s office and set a tentative surgery date for June, based on the pandemic’s trajectory at the time.

But shortly after scheduling the surgery, Dr. Arnaout called Paula to let her know it could be moved up to for May 6. He explained that the Brain Tumor Center had increased capacity for surgical cases and that safety protocols were in place to ensure a safe environment for patients. By the end of the phone call, Paula decided to proceed with an earlier surgery date. “I felt so relieved when I finally had a surgeon, a hospital and a date,” she says.

Preparing for Brain Surgery Without Family

The day before Paula’s operation, it started to sink in that her older son would soon drop her off at the Brigham for major surgery and then would have to leave. To help prevent the spread of COVID-19, the Brigham had implemented a temporary policy—which has since been updated—that didn’t allow visitors to accompany patients who were undergoing surgery.

“Before that moment, it hadn’t dawned on me that my family wouldn’t be able to visit me because of the virus,” says Paula. She worried about being alone during recovery, and she was especially worried about her children’s concerns. But the extensive research that led Paula to the Brigham consoled them. “As nervous as they were, they were comfortable with the decisions I had made and the care I would get.”

On May 6, Paula’s son dropped her off at the main entrance at the Brigham. She arrived at the COVID-19 pre-screening table where she was checked for respiratory symptoms. She was given a mask, which she was required to wear while inside the hospital. From there, Paula was escorted from pre-screen to admission to pre-op. Paula says the process was seamless.

In pre-op, several anesthesiologists and nurses entered her room. They assured her they would all stay beside her during her surgery. When Dr. Arnaout introduced himself for the first time in-person, Paula could see his brown eyes above his surgical mask. She felt comforted.

Brigham Nurses Provided Emotional Support During Recovery

That night, after an 11-hour operation, Paula woke up in the intensive care unit (ICU). She wanted to call her children, but she couldn’t remember the password to her cell phone. The next morning, she touched the fresh incision along her hairline. Dr. Arnaout had completely removed the meningioma, which was confirmed to be benign.

As she healed, Paula felt the absence of her children’s support. The nurses helped alleviate her children’s concerns. “They were so sensitive to my family’s worry,” says Paula. “My younger daughter called the hospital daily, and the nurses were gracious and compassionate when they updated her on my progress.”

The next night, Paula woke up in the ICU feeling emotionally overwhelmed. A nurse rushed to her side to talk her through the distress. “I was feeling the full force of having just had major brain surgery during a pandemic without my family,” says Paula. “The nurse calmed me down and helped me get through that difficult moment.”

Despite the separation from her loved ones, Paula says she never felt alone. “My care team at the Brigham was attentive and compassionate. They were just astounding.”

Processing the Surgery and Moving Forward

On May 10, after spending 4 days in the hospital, Paula was discharged. Her older son drove her home, where her partner took care of her while she recovered. Paula still has some mild numbness on her scalp, but otherwise she’s feeling close to normal. She has a follow-up MRI planned for August.

Undergoing major brain surgery during a global pandemic brought fear and discomfort, but Paula’s time at the Brigham was also marked with compassion, kindness and gratitude. “This brain tumor turned my life upside down,” she says. “But I had a surgeon with tremendous skill and a care team that provided compassionate and incredible care when I needed it most.”

Paula hopes her story can help other people who may be grappling with major medical decisions during the pandemic. “I can say without reservation that if people are waiting to have surgery at the Brigham, they should feel confident that every precaution has been taken and that every protocol is in place to ensure their safety,” she says.

As Paula continues to process her journey, the pandemic has made her emotional recovery more challenging. “Touch is important to me,” says Paula. “The pandemic has kept me from doing the things that would normally make me feel better, like hugging my children and my 3-year-old granddaughter.” Right now, her family visits her from the lawn outside her home.

Paula and her family are keeping their eyes on Rhode Island’s reopening guidelines. They have a tentative reunion planned in July. “I look forward to getting that healing touch that gives me comfort,” says Paula. “I can’t wait to hug my granddaughter.”