Shannon Hickey, patient, right, with her occupational therapist, Aura Weltman
Shannon Hickey, 29, never imagined a case of double vision shortly before Valentine’s Day in February would lead to an Emergency Department visit, two brain surgeries, and months of rehabilitation therapy. It has been a long journey, made easier by her medical team, and on one memorable day, by an unexpected word of kindness and cheer.
Shannon had always been very healthy, and only a week before her symptoms began, she was sightseeing in Paris with her best friend. At most, Shannon thought her symptoms might simply be due to a vitamin deficiency. Imaging revealed that was not the case. She had a brainstem brain tumor, and on February 14, Shannon underwent surgery to remove the tumor at The Mount Sinai Hospital, performed by a team headed by Isabelle Germano, MD, MBA, Director of the Mount Sinai Comprehensive Brain Tumor Center. When she awoke, her double-blind vision was much improved but she developed a new difficulty with her peripheral vision on the right. She also had difficulty recalling words and moving the right side of her body, as consequence of a small stroke that occurred during surgery. After a few days in the Intensive Care Unit, Shannon spent two weeks as an inpatient in the Rehabilitation Unit at the hospital.
Shannon describes herself as extraordinarily positive, and says she never felt the severity of all she was going through. “A right-sided deficit was fortunate,” she says. “I am left -handed.” And she gives a lot of credit to her “wonderful” team of therapists. Shannon praises Emily Teitelbaum, MS, OTD, Senior Occupational Therapy Rehabilitation Specialist, “Emily was my inpatient OT. She had been a professional ballet dancer before becoming an OT, and I was a volunteer dance instructor, so Emily designed my exercises based on ballet moves, which clearly were personalized for me. It was just so nice.”
“My physical therapist, Will Long PT, DPT, was such a happy and positive person,” Shannon continues. “He made everything fun. I had to learn all the basics, basically how to walk again, but it never felt like work.”
“It was an amazing meeting, to have all of these professionals, in one room, in person and virtually, supporting me in this way.”
Shannon returned home in late March, but needed to continue physical and speech rehabilitation therapy. She still required a brace to walk and had challenges reading. As the spring progressed, Shannon was eager to return to work despite her limitations, as she had taken a three-month leave and wanted to meet her self-imposed deadline. At that point, my wonderful outpatient occupational therapist, Aura Weltman, MS, Senior Occupational Therapy Rehabilitation Specialist was instrumental in my emotional recovery as well as my progress physically. Shannon says. “She set up an interdisciplinary meeting with my team, including my therapists, social worker, and Aveniel Klein, MD, PhD, Associate Professor, Rehabilitation and Human Performance. They helped me understand that I was doing all the work I needed to do to recover, but there was no timeline I could measure myself against. I needed to be patient. It was an amazing meeting, to have all of these professionals, in one room, in person and virtually, supporting me in this way.”
Unfortunately, the tumor had formed another cyst in her thalamus, so a second surgery was scheduled for June. Shannon admits she was nervous this time. “I had so many changes after the first surgery, I was scared.” But she says, she felt incredibly supported by the Mount Sinai team she had come to consider family. She recounts a small, but meaningful gesture by Dr. Germano. “I gave Dr. Germano a valentine on the day of my first surgery. For the second surgery, she was wearing a Snoopy surgical cap and told me she knew I liked Snoopy. I was confused, but a few minutes later, I recalled I had given her a Peanuts valentine featuring Snoopy. It was incredibly sweet of her.”
During this surgery, a biopsy confirmed that Shannon had pilocytic astrocytoma, a type of brain tumor that originates from glial (brain) cells called astrocytes and seen primarily in children. Most cases are benign, as was Shannon’s. Shannon says the day she was informed of her diagnosis was “the best day of my life.” She explains, “It was my lucky day to learn this tumor does not multiply. Literally, I can thank my stars, because these glial cells are star-shaped.”
Shannon is taking oral targeted-therapy specific for her tumor’s molecular signature and may have long-term decreased peripheral vision on the right side. But she remains upbeat and unfazed. “I have adapted to my vision deficit. I no longer need speech therapy and will cut back on OT soon,” she says. “And, I am so lucky, the hospital is near my home so I get to practice walking on my way to PT.”
Shannon with Prince Allah, parking attendant
Shannon is grateful to another special Mount Sinai staff member: On her walks back home along Fifth Avenue after therapy, she says she had to be hyper-focused to avoid falling. “I could not really pay attention to my surroundings or people.” But one day, she heard someone say to her: “Oh, progress.” The voice was that of Prince Allah, a parking attendant at 1176 Fifth Avenue. Shannon introduced herself, and thanked Prince for his interest and support. Prince says he had seen Shannon walk by for months, first on crutches, and then on her own, and noted how she worked at her gait, but still had her smile.
“I could not hold back, I had to tell her she was so impressive,” he says. “And when she came up and introduced herself, it made my day.” Mount Sinai is his first hospital work experience. “I love working at The Mount Sinai Hospital,” he says, “helping people in any way I can.”