Three years ago, Lilly Lee's back was so severely bowed she needed to thrust her hands into her pockets and lock elbows to hold herself up.
Lee had likely suffered from ankylosing spondylitis for decades, according to her doctor, Serena Hu, MD, a professor of orthopaedic surgery. The disease causes the back to stiffen, often into a forward-curved position and, for many years, the now-55-year-old Lee was able to adjust her activities as her disease progressed.
"I was bent over, but I could hold myself up and do everything," said Lee, a physical therapist who lives in Astoria, Oregon. "I was still working."
Then, on Christmas Eve 2016, she was in a car crash that left her with a fractured spine. The fracture exacerbated the bent of her spine from the ankylosing spondylitis, forcing her to quit work and to use a walker.
"The accident tipped her over the edge," Hu said.
Lee's condition became so severe that her lower spine curved forward 60 degrees. Most people stand 40 to 60 degrees in the other direction, Hu said. In 2019, Hu performed a daylong surgery to straighten Lee's back. She now stands upright.
Ankylosing spondylitis is an autoimmune condition that causes vertebral discs to stiffen, freezing the spine into a single, rigid position. Patients with the disease often hunch forward in response to the pain it causes, Hu said, then their spines harden. "They get stuck in that position."
After her auto accident, Lee was in too much pain and was too immobile to work with patients or get outside to exercise. She was able to live independently only because friends helped with tasks such as grocery shopping, doing laundry and driving her to appointments. She had always been active -- playing tennis and volleyball, and swimming after her condition grew more severe -- so she struggled to adjust to her new immobility.
Lee's doctor in Oregon told her that surgery could correct the spinal disfigurement, but he added that it required a specialized surgeon and carried neurological risks that might include a loss of function in her limbs. "He told me, 'Do the surgery only if you can't live the way you are,'" Lee said. "My friends told me I was never going to be happy if I couldn't get my spine fixed, and I knew they were right."
She and a friend flew to New York to consult with a surgeon, then to Stanford Medicine to meet with Hu, who described the surgical procedure she would use to straighten Lee's back. She said the surgery often causes a lot of blood loss and carries a 25% chance of complications.
Lee chose Hu for the procedure partly because of her reputation -- Lee's doctor in Portland and a physician she knew from when she was studying physical therapy recommended Hu -- and partly because of her honesty.
"I felt like Dr. Hu was really straightforward about everything," Lee said. "I thought, 'OK, I'll do it.'"
A complicated surgery
A friend joined Lee when she came to Stanford. Lee recalled that the night before the procedure, the two of them went out to dinner at an Asian fusion restaurant in downtown Palo Alto. "I wanted to pick a good place, because I thought this could be my last meal," Lee said.
The surgery took all day. Hu inserted screws into Lee's spine, then cut a wedge and bent it backward to straighten it. She also attached rods to the screws to hold the spine in place.
When she first met Lee and viewed her X-rays, Hu said, "I was worried that, given how far forward she was bent, one surgery wouldn't be enough." By the time the surgery was complete, however, Hu felt that Lee was in as good shape as she would ever be.
Lee spent a week at Stanford Hospital, then two weeks in a rehabilitation center. Her friend, who stayed in a nearby hotel, headed home once Lee was released from the hospital.
"When I first stood up with a walker after surgery, I felt tall," Lee said. "I could see people face to face. I gained 6 inches in height!"
Lee had lost some blood during the surgery and suffered from headaches and nausea that were brought on by low hemoglobin. In addition, her left leg was numb: "It couldn't hold me up," Lee said. Her leg gradually improved, though she still has some numbness.
Within two months after the surgery, Lee had graduated from a walker to a cane, then to walking without support. She wore a back brace for six months whenever she was out of bed.
Though Lee's spine is now straight, it is still rigid, making it difficult to put on socks or clip her toenails. It also prevents her from performing some of the tasks required of a physical therapist. She's excited about pursuing other lines of work, including writing children's books and teaching physical therapy.
Hu said that Lee's spine isn't likely to become worse. "Her disease seems to have burned itself out," she said. Still, because her back can't absorb any force -- such as during an accident -- and is prone to fracture, Lee needs to be vigilant about avoiding falls.
Lee no longer plays tennis or volleyball, but she's more active since her surgery. She can visit the beach with her dog, Jin Dao; pedal on a stationary bicycle; and play low-impact sports such as pickleball.
"I can do a lot more now than I could," she said. "I can walk my dog, I can garden; I'm really enjoying it. I can admire the stars above while I'm standing. And I have no more back pain!"
"My neighbors see me walking around, and they're amazed at how much better I am," she added. "I'm really grateful to Dr. Hu."
Top photo courtesy of Stanford Health Care