Lauren Crowley, 36, has a long and complicated medical history. She has often heard doctors describe her conditions as being "idiopathic," or "grey," meaning they couldn't pinpoint the cause.
"From a very young age, I was always in and out of hospitals," she says.
She was frequently hospitalized for severe asthma and spent some time on Ellison 18 with Mass General for Children specialists. She also underwent different tests for a variety of immunosuppressive diseases.
Her neurological symptoms started when she was in college. She noticed strange sensations in her face and one day, she looked in the mirror and saw that one side of her face slanted downward. Doctors thought it could be Bell's palsy, but she sought a second opinion, which brought her to a team at Mass General.
Solving a Medical Puzzle
For years, Lauren felt like she had to be her own medical detective, researching answers to her questions and trying to solve the puzzle of why she felt such unusual symptoms, such as a tingling sensation in a section of her face when she applies makeup.
Now, a team of specialists from Mass General Brigham work together to find the best possible treatment plans for Lauren's medical conditions, even when unexpected complications arise. She says her primary care provider Jeff Odiet, MD, helped her assemble a team of super heroes: Sarita Patil, MD, an immunologist in the Allergy & Clinical Immunology Unit in the Department of Medicine at Massachusetts General Hospital, Frederick Barker, MD, neurosurgeon at Mass Eye and Ear and in the Department of Neurosurgery at Mass General, and Daniel Lee, MD, FACS, director of Pediatric Otology and Neurotology at Mass Eye and Ear.
"I have some idiopathic issues, but I'm not idiopathic in their eyes," she says. "They can solve that. It's freeing."
A Supportive Team of Specialized Experts
At 21 years old, Lauren scheduled a second opinion appointment with Dr. Barker who had previously treated one of Lauren's family members. Just two weeks after the onset of her neurological symptoms, and 15 hours after her first appointment with Dr. Barker, she was prepped and ready for a suboccipital craniotomy, in which the surgeon removed a section of the skull behind her ear to access a cyst.
“Most arachnoid cysts are not treated with surgery, but this surgery was prompted by the occurrence of a facial weakness with a large CSF (cerebrospinal fluid) collection pressing on the facial nerve, with the possibility raised by the MRI that the fluid collection was in fact caused by a tumor,” says Dr. Barker. “This possibility was ruled out at surgery by biopsy.”
"It wasn't a lot of time to process, but I knew I was in good hands," Lauren says.
When she was recovering, the medical team kept her comfortable. Lauren’s family thought her facial weakness had improved immediately after surgery in the recovery room, and it did rapidly recover to normal.
"Mass General excels at figuring out the hard stuff," she says. "The doctors make me feel comfortable. They make me feel like I can be in the driver's seat of my health instead of the back seat. It's so empowering."
A Perspective Shift From Patient to Advocate
In December 2020, Dr. Lee performed Lauren’s third brain surgery. Music is an incredibly important part of Lauren’s life, so as she headed into surgery, nurses made sure she had her favorite ear buds, and that her mom could give her a hug, despite the challenges of COVID-19 safety restrictions.
Lauren also has an extensive history of allergies. Separately, after the brain surgery, she worked with her immunologist to make a major lifestyle change, leaving a career as a hair stylist because she is allergic to hair dye. In February 2021, she also started immunosuppressive infusion therapy after being diagnosed with a rare autoimmune disorder called polychondritis.
She says the Mass General team truly helped her crack the code on her intense medical history.
Now, she writes a blog about coming to peace with her health journey and advocates for other patients with chronic illness.
"Mass General has helped me get to a point in my life when I can speak freely and feel strong," she says.
A New Outlook
After three craniotomies, as well as a lung surgery to treat her autoimmune disorder, and a specialized procedure called tracheobronchial plasty to treat a collapsed trachea, Lauren feels confident that her healthcare team supports her physical and mental health, and she is prepared for any unexpected challenges that might lay ahead.
"I have a home base and I have people I can email and rely on to answer my hard questions at times when I don't feel good," she says. Even on the days when she doesn't feel well, she feels hopeful knowing that she has a strong team helping her solve the medical puzzles.
"I feel supported knowing that I have endured hard things and I have a safe place to go to when the hard things can pop up again," she says.
Stephen E. and Catherine Pappas Center
The Stephen E. and Catherine Pappas Center for Neuro-Oncology at Massachusetts General Hospital offers the most advanced care for patients with brain tumors and nervous system tumors