Choroid plexus papilloma
When Shannon received her diagnosis following months of headaches and vomiting and, ultimately, a CT scan, neither she nor the nurse on the phone knew what it meant.
"What is that?" Shannon asked.
"Honestly," the nurse replied, "I don't know."
"I tried to look it up," Shannon recalled later. "I couldn't even spell it."
"It" was a rare choroid plexus papilloma brain tumor, a benign tumor that causes cerebrospinal fluid to build up, leading to increased intracranial pressure and hydrocephalus. Christopher McPherson, MD, the Mayfield neurosurgeon who would remove the papilloma, has seen fewer than 5 of them in his 15-year career.
After being diagnosed with "some huge medical term," Shannon assumed she was suffering from migraine headaches or vertigo. After all, she was active and healthy. She worked full-time as a 4-H Youth Development Educator, was a wife and mother of a 4-year-old son, and was a coach for Girls on the Run. Her referral to Mayfield Brain & Spine did not trigger any anxiety or internal alarm.
Although Mayfield normally requires brain tumor patients to undergo a brain MRI prior to meeting with a neurosurgeon, Shannon's insurance company declined to approve the test. Dr. McPherson ultimately agreed to see Shannon without the MRI, setting the stage for Shannon's first of two major shocks.
When Shannon entered Dr. McPherson's office alone, Dr. McPherson quickly got her husband on the phone. "Shannon's tumor was fairly large – 2.7 centimeters by 1.6 centimeters," Dr. McPherson said. "It was a difficult tumor."
Dr. McPherson, who performed his post-residency fellowship in neuro-oncologic surgery at the University of Texas M. D. Anderson Cancer Center, described the tumor to Shannon, told her it was serious, and scheduled her for surgery.
"They wanted me to pack a bag and go to Good Samaritan Hospital for surgery the following day," Shannon said. "I'm so thankful we had Dr. McPherson because his bedside manner was so wonderful. He was so patient. I was a hot crying mess. After talking with my husband, I asked if we could call my mom, which is what every 39-year-old wants to do. He walked through everything and explained the scenario. He said it was pretty important that she get down here. So she came."
Still in disbelief, Shannon was driven home by one of her co-workers. "I was trying to keep my life together," she said. "I have a 4-year-old at home. That morning started out like any other morning. I dropped off my son at day care on Thursday and didn't see him again until Sunday."
At Good Samaritan, Shannon underwent pre-op screening, which included a pregnancy test and an MRI. Then came the second shock.
"The pregnancy test came back positive just as she was about to go into the MRI machine," Dr. McPherson said. "She was literally on the table. So the tech pulled her out. The tech had to tell her she was pregnant, which was quite a surprise to her and everyone else."
Shannon's next difficult task was to have the "what if" talk with her husband, Jesse.
"We were married five years ago. I told him we do need to talk about this," Shannon said, choking up. "I could come out of this OK, or I could come out a vegetable or I could die. It was the hardest conversation I've ever had in my life. It was really emotional. Later that night, my minister came and we talked and prayed. With my career, I have friends all over the country, and they were making sure I knew that I was being prayed for. That was a huge comfort to know there were so many prayers and so many people thinking about us. That night I knew everything would be OK. I knew I was in good hands with Dr. McPherson and his team, and God would be with me."
The absence of MRI scans meant that Dr. McPherson had a limited evaluation prior to the surgery. "This did not change what we did, but made it hard to know the true extent of the tumor going in," he said. "Some choroid plexus papillomas come out easily. This one was adhering to many important structures, including the brainstem and important blood vessels, such as the posterior inferior cerebellar artery, which provides critical blood supply to her brain."
Because the tumor was wedged against critical structures, Dr. McPherson was not able to remove it in its entirety. "The tumor was actually growing out of the floor of the 4th ventricle, which is the brainstem, so I had to leave a small amount of tumor that was in her brainstem behind," he said. "Otherwise, she could have suffered severe and permanent deficits, such as the inability to eat or swallow without a feeding tube or breathe without a tracheostomy."
In a social media post, Shannon wrote that when she woke up, "I was cross-eyed, had double vision, and couldn't figure out how to put one foot in front of the other. Two days before at the gym I had been doing burpees, so this was really hard to understand."
She spent four days in Good Samaritan's neuro intensive care unit and then moved to TriHealth's rehabilitation facility for another 13 days. "My first day there, they had me set goals," Shannon wrote in her social media post. "My ultimate goal was to get home to my family, but second to that was to be back for the end of the Girls on the Run season and complete the final 5k. Days of learning how to walk again ensued, tears of frustration, trying every day to have an attitude of gratitude that I was alive, not questioning but relying on faith and the support of so many carried myself and my family through this process."
Following her release from rehab, Shannon continued her recovery as an outpatient at the Center for Balance with Dr. Patrick Shumrick. "Slowly but surely," she said, "everything started working again."
Shannon eventually returned to work and, by placing a patch over her left eye, was able to mitigate her double vision and regain her ability to drive. Three months after surgery, Shannon achieved her goal of completing a 5k, walking the entire route in less than 50 minutes. She is expecting her baby in the spring of 2020.
"Shannon's prognosis is good," Dr. McPherson said. "This is a benign tumor. I did have to leave some tumor behind that was in the brainstem, but it's hard to know how much since we have limited evaluation without contrast because of her pregnancy. I believe it was a very small amount. As soon as her baby is born we will get a new MRI with and without contrast, and that should tell us more. Overall, the chances for recurrence are low. If it does come back, it could be treated with radiosurgery."
Shannon is grateful to many individuals who helped her along the way. They include her obstetrician, Amanda Parker, MD, and her internist, Randall Leduc, MD, who recommended her CT scan; Dr. McPherson, the nurses at Good Samaritan Hospital, and her TriHealth rehabilitation team; Dr. Shumrick; Karl Golnik, MD, of the Cincinnati Eye Institute; Anytime Fitness Aurora; her mother, Cindy Brostek; her Girls on the Run Cincinnati colleagues, including coaches Emily Warner and Carrie Bilodeau; and her coworkers Jill, Alyssa, Trenna and Jessica.
"I'm so thankful to be home and able to cook dinner in my own kitchen and read a bedtime story to my little boy," Shannon said. "It's been an incredible, crazy journey, not all sunshine and rain."
~ Cindy Starr
Hope Story Disclaimer -"Shannon's story" is about one patient's health-care experience. Please bear in mind that because every patient is unique, individual patients may respond to treatment in different ways. Results are influenced by many factors and may vary from patient to patient.
Shannon prior to surgery. The fiducials on her head were part of the brain-mapping technology that helped Dr. McPherson navigate to the tumor and remove it safely.