Buffy Beal enjoys looking up at the sky.
It’s something she did for the first time at the age of 50, in 2018, after undergoing spinal surgery with John H. Shin, MD, the Kingdon-Saylor Family Endowed Chair in Neurosurgery, Director of Spine Oncology & Spinal Deformity Surgery and Director of the Massachusetts General Hospital General Spine Neurosurgery Network.
“I was born with something called a flat neck,” she says. “My neck curved forward an entire inch, so I spent all my time in pain, with hunched shoulders and my head down.”
Buffy’s condition is known as “chin-on-chest syndrome,” when the spine is fused in such a way that her chin was always tucked in toward her chest.
“It can affect the way individuals with this condition swallow, while also causing severe neck pain. It can also take an emotional toll on quality of life as it is often disfiguring,” says Dr. Shin, who is internationally known for his innovations in spine surgery.
Trying to Manage the Pain in Vain
Despite living with constant pain, Buffy earned her culinary degree and worked as an executive chef, competing in American Culinary Federation competitions and enjoying an active lifestyle that included hiking, cross-country skiing, running, kayaking and motorcycle touring.
“I believe staying active helps engage the mind and the body to manage the pain,” says Buffy.
The chronic pain, however, finally led her to spinal surgery, and, since 2006, she had undergone three neck surgeries at three different hospitals across the country. She endured the insertion of plates, screws and titanium rods, all designed to correct her spinal deformity, none of which were effective.
“I had to educate myself on neurosurgery, because I discovered not all neurosurgeons are created equal and they all had different ideas about what to try,” she says. “I felt like a guinea pig.”
Discovering the Best
When her husband Patrick’s business relocated them to New Hampshire (from Alabama), Buffy began researching neurosurgeons in Boston and discovered Dr. Shin, one of few surgeons in the world with the skills and experience to perform the complicated surgery necessary to correct her spinal deformity. He arrived at Mass General in 2011, and, over the past decade, has developed specialized expertise and technical innovations for this condition, attracting patients from all over the world.
“John’s commitment to improving the quality of life of his patients represents the goal of all of our team members in Neurosurgery,” says Bob Carter, MD, PhD, Chief of the Division of Neurosurgery at Mass General. “He is focused on research to advance the safety and effectiveness of these surgical procedures, delivering compassionate, well-informed care and sharing his knowledge widely. I am so proud of his work and grateful for the philanthropic support that allows us to recognize him with the Kingdon-Saylor Family Endowed Chair in Neurosurgery.”
Communication is Key
Dr. Shin says that in cases like Buffy’s, getting to know the patient and having frequent discussions regarding the risks, benefits and potential complications of surgery are important. Patients take a leap of faith when considering an additional spinal surgery, so it is critical to be open about expectations.
Communication, he says, is key.
“This surgery can be very invasive,” he says, “and is associated with a high risk of complications. I was impressed with the research the Beals had done in advance of our first meeting and their realistic expectations.”
“We really appreciated his honesty,” Patrick Beal says. “He explained the severe risk, but also the reward that was possible.”
“He also made it clear what he would do, and what I had to do,” says Buffy.
All-In, Every Step of the Way
With so many elements involved in caring for patients with severe spinal deformities, Dr. Shin is quick to credit his Nurse Practitioner Kristina Shultz, whom he describes as the glue that holds everything together.
“Kristina is an amazing advocate for our patients and provides the highest level of care possible to ensure that everyone feels heard and cared for,” Dr. Shin says. “Not only does she inspire confidence, but she naturally fosters a sense of trust that helps patients endure the highs and lows of recovery from complex spine surgery. Surgery is an intense life experience, and we assure patients we are ‘all-in’ every step of the way.”
“From the moment we arrived in the parking lot at Mass General until we left for home after Buffy recovered from the surgery, the level of service was outstanding,” says Patrick. “It was great to know someone had our back every step of the way.”
What’s most important to share with other patients, Buffy says, is: “Don’t give up hope. Be resilient and do everything you can to focus on improving your quality of life.”
To learn more about how to support Neurosurgery at Mass General, please contact us.
