To Beth Jersey, it sounded like a no-brainer.
The pain from the deteriorated joint at the base of her thumb caused by osteoarthritis was worsening, making her favorite hobby — gardening — increasingly difficult.
So in February 2014, the 58-year-old payroll manager who lives in northern California decided to have the outpatient operation recommended by her hand surgeon to repair the joint. Two of her friends had undergone the same procedure and “were really happy with the results,” she said. “They had no complications. It sounded really simple.”
But as Jersey discovered almost immediately, her case was anything but.
Jersey spent three months calling or visiting her surgeon’s office seeking help for severe shooting pain in her left hand. She sought treatment twice in an emergency room before a surgical assistant suggested a possible cause, a diagnosis subsequently confirmed by her surgeon.
“I complained to anyone who would listen,” she recalled, “but I was just brushed off as a hypersensitive patient.”
But diagnosis, Jersey quickly discovered, was only the first step. Finding effective treatment took considerably longer.
William Longton, a Stanford-trained pain specialist who saw Jersey about a dozen times in the year after her operation, remembers her as “organized and informed.”
“She didn’t come in and say, ‘Fix me.’ She was not histrionic,” said Longton. “This is a lady you wanted to try and help.”
Before surgery, Jersey had received three cortisone shots to alleviate the pain, which impaired her ability to use her hand to grasp, pinch or twist. Her arthritis, a common malady in people older than 50, was moderately painful but not debilitating. When the shots, administered over a six-month period, failed to help much, a type of ligament reconstruction seemed a logical next step. (Other treatments include physical therapy and hand splints to immobilize the joint, as well as anti-inflammatories, which Jersey took.)
The procedure proposed by her surgeon involves replacing the deteriorated cartilage in the thumb joint with a graft from a piece of tendon harvested from the patient’s arm.
The operation would be followed by about a month in a cast, then physical therapy to restore mobility. By the end of three to six months, Jersey’s surgeon told her, she should be largely pain-free and able to garden and perform other activities without pain.
But in the hours after surgery, Jersey developed stabbing pain and a burning sensation in her hand. It was alarming and intense — and much worse than the pain that had prompted her to have surgery in the first place.
Her surgeon’s staff repeatedly told her that postoperative pain was normal and would recede once the swelling diminished. But a week after her operation, when her pain hadn’t subsided, Jersey worried that her cast was too tight. Because it was a weekend, she went to a nearby ER to have it replaced.
The new cast didn’t help. Her surgeon then prescribed hydrocodone, a narcotic pain reliever, and when that didn’t work, a more potent drug. They helped her sleep but did little to relieve the pain while she was awake.
The surgeon’s office, she recalled, “got really tired of hearing from me.” Jersey said her calls often were not returned for days, or sometimes at all.
During follow-up visits to the surgeon, she said, he gave her hand little more than cursory consideration before reassuring her that she was healing normally.
When she started physical therapy, Jersey said, her range of motion increased and the swelling decreased, but the pain remained constant. The physical therapist, puzzled by Jersey’s persistent pain, recommended hot and cold desensitizing creams. They didn’t work, either.
Jersey said the pain made it hard to function, although work sometimes proved to be a welcome distraction.
In May, three months after her operation, she recounted her problems to a surgical assistant during a follow-up appointment. He took a careful look at her hand and pointed out the shiny appearance of the skin on her thumb joint.
Perhaps, he suggested, Jersey had developed a rare condition known as complex regional pain syndrome, or CRPS, formerly known as reflex sympathetic dystrophy.
The chronic pain condition, diagnosed in about 200,000 Americans annually, typically affects one limb or extremity, sometimes after an injury such as a sprain or broken bone; in other cases, it results from nerve damage during surgery. The condition is believed to be caused by a malfunctioning of the central and peripheral nervous systems, which transmit nerve signals from the brain and spinal cord. When these systems go awry, prolonged and excessive pain is common, as are changes in the texture of the skin and increased sensitivity in the affected area. It is not known why some people develop CRPS while others with the same injury don’t, although genetics and high levels of inflammation seen in those with autoimmune conditions or asthma may play a role.
There is no test to diagnose CRPS; diagnosis is made on the basis of symptoms and after ruling out other disorders. Treatment for the syndrome is believed to be most effective when it is begun in the first few months after symptoms appear.
‘Ignored and abandoned’
Jersey’s surgeon concurred with the probable diagnosis of CRPS and referred her to Longton, an anesthesiologist who specializes in treating patients suffering from chronic pain.
Jersey said she was glad to have an explanation, but added that the surgeon’s message seemed clear: He was finished with her. “I felt ignored and abandoned,” she said. Although she suspects that the pain was the result of nerve damage during her surgery, its cause hasn’t been conclusively determined.
She said she was also upset that the possible problem hadn’t been mentioned during preoperative discussions. And she was especially angry at herself for not being more skeptical about surgery and not trying less drastic remedies first, such as physical therapy or hand splints.
Longton, who first saw her in June, said that her CRPS was “pretty classic.” In addition to the shooting, burning pain and shiny skin, Jersey’s hand and wrist joint had become stiff, which can occur in the later stages of the disorder.
CRPS, Longton noted, is “not well understood.” Some patients have a minor case, while others “live with brutal pain.” Longton said that one of his patients, who was injured at work, is so severely affected that even when sedated, “if you put a plastic drape on his hand, he just goes off. Hers was not to that level.”
Jersey underwent a series of four nerve block injections in her neck. In some patients these injections are effective in breaking the cycle of nerve pain and may be used in combination with drugs. Nine months after her surgery, her pain decreased to a manageable level.
Several months later, she developed severe abdominal pain, which was treated first by Longton and later at Stanford’s hospital. Longton said he doesn’t believe Jersey’s hand pain and the subsequent stomach problems are related. “She may be someone who has a susceptibility for neuropathic [nerve] pain” for unknown reasons, he said.
Looking back on the past three years, Jersey said she regrets what she believes was a hasty and ill-considered decision that has left her hand in worse shape than it was before. The skin remains easily irritated and overly sensitive, she said, and she must take care not to have sleeves touch it.
But Jersey said she also feels triumphant that she managed to persevere and, with the support of family, friends and responsive doctors, to move from debilitating pain to having what she calls “a fairly normal life.”
“It’s such a horrible feeling to know that I made the choice to do this,” she said, adding that she wished she had consulted her longtime internist before opting for an operation. “If I knew what could have happened, I’d never had had the surgery. To go from shots to surgery was probably stupid.”
Other people’s experiences, she observed, are no substitute for a careful consideration of the possible risks and benefits of surgery.