Carolyn's Story: A Will to Stand Straighter

Compounding Effects

Carolyn, 65, was first diagnosed with scoliosis at age 15. Characterized by a sideways curvature in the spine, scoliosis most often develops during the growth spurts common throughout puberty. "At the time, I didn't receive any recommendations or exercises for it," she says, "so over the years, my scoliosis became worse and worse." 

Her years teaching little ones often required her to squat down to the height of her students and stand for hours on end atop thinly carpeted concrete floors. This repeated stress exacerbated her already existing discomfort.

After retiring in 2009, Carolyn was finally able to put her feet up, but her pain persisted. "What I felt became very severe, running from my groin area, through the inside of my leg, and into the back of my knee," she says. Although she went to physical therapy to address her sciatic nerve pain, as well as her scoliosis, she says the severity "consistently increased."

Eventually, Carolyn's primary care physician ordered an MRI. The results showed that her scoliosis had progressed. That's when she was referred to the experts in the Adult Spinal Deformity and Scoliosis Program at Brigham and Women's Hospital in Boston.

Facing it Together

Approaching the hospital before her first consultation, Carolyn felt the sort of nervous excitement that hinted to her that the road ahead, while long, was something she was ready to take on. On that first day, she met Hasan A. Zaidi, MD, neurosurgeon and co-director of the Adult Spinal Deformity and Scoliosis Program at Brigham and Women's, a program that combines the expertise of the Orthopedic Surgery and Neurosurgery teams in treatment planning and surgery to provide integrated care to the most complex cases.

"I could tell he was a caring person," Carolyn says. She points out that he was not only "very informative" about the kind of surgery she would need to correct her spine, the potential complications of the procedure, and its extensive recovery, but was also "concerned about how I would best handle the procedure." She says, "He took me, not just my back issues into consideration."

Dr. Zaidi encouraged Carolyn to take her time to think about the procedure and come back with a decision in one month's time.

"After I took it all in, I knew what I needed to do," Carolyn says. "My life was being impeded by my back problems, so something had to change. It was something that I was nervous about, but I trusted Dr. Zaidi and knew, bottom line, that I needed to have it done in order to improve my quality of life."

At the doctor's recommendation, Carolyn brought her sister and good friend along for the second consultation to get them up to speed about the surgery and their role in the recovery process. From there, special x-rays were taken and advanced preparations were made. A surgery this complex requires a specialized care team and a cutting-edge technique.

"All these special arrangements made it feel like my surgery was something that everyone at Brigham and Women's was concerned about, wanted to help with, and was trying to make all the best things available for," Carolyn says. "It made me feel like I was part of a family."

Radical Change Through Radical Means

According to Dr. Zaidi, every plane of Caroyln's spine had significantly abnormal curvature. The surgery to correct this would require the installation of large metal rods and dozens of screws to help stabilize her newly straightened spine. Carolyn was wheeled into the operating room one early morning in October of 2018. After 11 hours, Dr. Zaidi emerged and told Carolyn's sister and friend that the surgery was a success, but he didn't take all the credit.

"There are so many important links in the chain that need to fit to allow a surgery like this to occur and be successful," Dr. Zaidi says. "The surgeon is just one tiny part of a much larger picture. I really don't think I could do this if it wasn't for an institution like Brigham and Women's Hospital that had all the resources available to handle such a complex procedure."

With the life-changing surgery now behind her, Carolyn began her recovery at Brigham and Women's Hospital, where she spent eight days under the watchful eyes of her clinical care team. "After the ICU, there was a great team of nurses that were always there to help me through my early recovery, and the doctor came by with his physician assistants to visit often," Carolyn says. "I was given a lot of moral support alongside all the checks on my physical wellness."

Those first eight days were only the very start of what will end up being a year-long recovery period. The surgery, says Dr. Zaidi, is considered a controlled trauma, so the post-operative care is a crucial step in the journey to coming out on the other side of recovery as successful as possible.

"It takes quite some time to reorient your body to the new shape that it's in," Dr. Zaidi says. "You're taller, you're in a new position than you've been in for the past 20-30 years of your life, and you have to get used to essentially this new body, which takes a lot of coordination and a lot of physical therapy."

Attitude is Everything

Carolyn could feel that the pain that had pestered her for years was gone after only one month post-surgery. In this time, she began her stay at an inpatient rehabilitation center and was reunited with her faithful support companion, Priscilla, a fluffy white Havanese who keeps her owner close.

As her spine continued to heal, Carolyn was prescribed a back brace to lessen the strain on her spine as she transitioned back into her daily routine. A cumbersome accessory that covered her from chest to pelvis in hard plastic, the brace became a magnet for curious eyes and direct questions from people unashamed to ask Carolyn what it was. Knowing that her brace would attract attention wherever she went, Carolyn decided to give people something better than hard plastic to look at by using her brace as a base for fantastical costumes that she hoped would bring smiles to people's faces.

Carolyn created multiple costumes for many different occasions, starting near Christmastime with a design that transformed her into a Christmas tree—complete with a bright yellow star encircling her smiling face. To her, each costume was a tiny act of rebellion and a big display of positivity, all wrapped up in colorful construction paper.

"It was my way of saying, 'Hey, I may be wearing a back brace, but that doesn't mean I need to be down in the dumps about it," Carolyn says. "It's so helpful during recovery to look on the lighter side of things and think positive. This really helped me to maintain a more positive attitude. I guess you could say the kindergarten teacher side of me came out."

Looking ahead, Carolyn is excited to finish her recovery strong and get back to her favorite activities, like gardening, bowling, and playing with Priscilla. She also plans on gifting Dr. Zaidi a special photo album, complete with a potential business proposition.

"I'm going to give Dr. Zaidi a catalog with all my costumes and include an order form in the back in case any other patients requiring a back brace want to order them," says Carolyn. "I know how much worse things could be, so I want to spread all the positivity I can to folks who might need it."