Even though she couldn’t see it, Jan Harrod could sense the dismissive eye roll that greeted her call to the orthopedic surgeon who had been unable to treat the persistent pain in her shoulder.
On Inauguration Day 2009, Harrod, then 49, had undergone a total shoulder replacement after two arthroscopic procedures had failed to repair the severe cartilage tear she suffered in a fall.
But instead of relieving her pain, the surgery had left Harrod with an unexplained gnawing ache in her right shoulder and upper arm. Despite numerous tests, months of potent antibiotics and painful procedures, her surgeon found no sign of infection or any other problem. Her physical therapist was equally perplexed: Harrod’s new shoulder had an excellent range of motion — the ability to move freely — a key barometer of surgical success.
So why, Harrod kept asking, did it hurt to put a teacup in the microwave or pull laundry out of the washing machine?
It was a chance question from her brother that ultimately led to a reevaluation of her case, upending long-standing assumptions about what was wrong and how best to treat it. In all, Harrod underwent seven operations performed by three specialists before her shoulder worked and felt right.
“I never really realized before just how important it is to be tenacious,” she said. “I’m a dumpy middle-aged woman and it’s easy to feel intimidated by doctors” — especially surgeons with a commanding presence.
In June 2007, while giving a presentation at a church in Northern Virginia, Harrod fell off a low podium, ripping the cartilage in her shoulder.
When three months of physical therapy and painkillers failed, the first orthopedic surgeon performed an arthroscopic procedure, which allowed him to inspect the joint and make some surgical repairs. He told her that the tear, known to baseball pitchers as a SLAP injury, was worse than first thought and that more extensive surgery might be required.
In June 2008, after months of PT, Harrod still had trouble lifting her arm, and the pain remained strong enough to require Vicodin, a narcotic pain reliever. After a second arthroscopy revealed extensive arthritis, the surgeon told Harrod she might need a total shoulder replacement.
When Harrod was no better after five more months of therapy, her brother, a lawyer for a Seattle hospital, advised her to find a highly experienced shoulder specialist, not a general orthopedist. Her new surgeon, who practices in Northern Virginia, also recommended a total shoulder replacement, using a prosthetic joint that Harrod understood would be made of titanium. During the preoperative physical, she answered the standard questions about whether she had any allergies, especially to drugs and latex; she had neither.
Her 2009 operation went well, and after about a month in a sling, she started a new round of PT. Although it soon became clear that Harrod’s range of motion was much improved, a deep ache had settled in her upper arm and shoulder, which felt different from the pain she had experienced before the joint replacement. While she could now lift her arm above her head, the normal swinging movement of her arms when she walked hurt.
After six months of rehab exercises, she asked the surgeon why she was still in pain; his tone turned chilly.
“I haven’t had a joint infection since 2004,” he said, referring to one of the most serious complications of the surgery, “and I don’t intend to have it now.” Harrod felt chagrined, as though he was blaming her for not getting better.
Because infection was the most likely cause of the pain, the surgeon prescribed the first of many courses of antibiotics and gave her steroid injections. He also ordered monthly tests to monitor her white blood cell count; her sed rate, a measurement involving red blood cells; and her level of C-reactive protein, which is produced by the liver. Both her sed rate and CRP levels were persistently elevated, which signaled inflammation, but her white count was normal. Subsequent tests for Lyme disease, lupus and rheumatoid arthritis were all negative.
In November 2009, 10 months after surgery, her doctor told her he suspected that a component of the artificial joint might have loosened, causing pain. He performed an arthroscopic exploration to see if he could spot a problem, but found nothing. Harrod said that by this point the pain was waking her at night, and one of her adult daughters, an EMT, was concerned about the Vicodin her mother was taking routinely.
“I think if I had been 69 or 70, I might have said, ‘Well, this is as good as it gets,’ ” she said. “But I wasn’t even 50 and couldn’t imagine living the rest of my life like this.”
The orthopedist and his staff seemed increasingly unsympathetic, as test after test failed to find anything definitive. “I wanted to say, ‘I know that to you I’m just 15 minutes on your calendar once a month, but this is my life,’ ” she recalled.
In March 2010, her surgeon, contemplating removal and replacement of the joint, sent her to Philadelphia for a second opinion. Shoulder specialist Gerald Williams recommended that her Virginia surgeon leave the joint in place but culture its surfaces and the surrounding tissue to determine if a smoldering infection was present. Harrod’s fifth surgery, performed the following month, found nothing amiss.
After that operation, Harrod met with an infectious-disease specialist at the behest of her surgeon. He didn’t think her pain was the result of an infection, but Harrod insisted that she “wanted something done” and pushed for stronger medicine. She got a month of intravenous vancomycin, one of the most potent antibiotics available, administered through a central line that was surgically implanted in her upper left arm.
Her pain was undiminished.
In January 2011, Harrod’s brother was in New Orleans on a business trip and met a cousin, a rheumatologist who practices there. The conversation turned to Harrod’s long-standing shoulder problem, and her brother asked whether it was possible that Harrod’s severe, lifelong allergy to nickel might have something to do with it.
Harrod’s childhood rashes — caused by cheap jewelry containing the metal, which made her arm look like she’d rolled in poison ivy — were family lore. She’d been warned never to wear anything with even a trace of nickel; about 10 percent of adults, particularly women, are allergic to the metal. The cousin said he had heard of allergic patients who’d developed bad reactions after receiving metal implants.
Harrod initially dismissed the theory.
“I said to my brother, ‘It can’t be, because the thing is titanium.’ ”
But increasingly intrigued — and desperate — she began researching metal allergies in artificial joints. She learned that they had been documented for about 20 years, mostly in knee and hip replacements, and involved a variety of metals. The Food and Drug Administration’s Web site recounted the case of a heart patient who experienced a severe systemic reaction to a stainless steel stent.
Although Harrod had been routinely quizzed about allergies preoperatively, she had forgotten to mention her metal allergy. The FDA advises that doctors and patients explicitly discuss such allergies before surgery, since “pre-procedure questions to identify potential allergic reactions are often directed [at] drug reactions or sensitivities to latex.”
During a March 2011 appointment with the Virginia surgeon, Harrod asked him if he thought she might have developed an allergy to titanium. “He just pooh-poohed the whole idea,” she said, and looked askance at the research she had brought with her. Her shoulder joint was not entirely titanium, he informed her, but was composed of many metals, including nickel.
Harrod was aghast. “I’ve had an allergy to nickel all my life,” she said. “I wish you’d told me.” The doctor looked frozen and was silent, then suggested another six-week course of the antibiotic she had just finished. “Your way isn’t working,” she recalls telling him before walking out of his office for the last time.
A few weeks later, her primary-care doctor helped her arrange a MELISA blood test, which can detect metal allergies; it is not widely used in the United States. Of the 20 metals for which Harrod was screened, her only allergy was to nickel.
Armed with her research and test results, she returned to Philadelphia to see Williams.
An allergic reaction to a metal joint is rare — Williams said he has encountered about four cases in approximately 4,000 shoulder replacements — but he became increasingly convinced that Harrod’s problem was not an infection, although it was not clear what it was. Pinpointing a metal allergy is difficult: Testing is imprecise and other causes of pain — including infection, loosening of the implant and improper alignment of the device — must be excluded first.
Williams proposed a two-stage surgery: He would remove the prosthetic joint and put in a spacer device impregnated with antibiotics while waiting for a custom-made non-nickel implant to be manufactured. Then he would install the nickel-free prosthesis.
“I wasn’t sure what to expect,” recalled Williams, a professor of orthopedic surgery at Jefferson Medical College, noting that the first implant had been positioned perfectly, which ruled out a misalignment problem. “I was a little concerned about whether she was going to get better.”
After he removed the problem implant, the ache began to recede. But the real test would come two months later, when he installed the nickel-free device. “It was remarkable, like someone flipped a switch,” Williams recalled.
Although she faced months of recovery and PT — again — Harrod said she felt optimistic for the first time in more than a year. “I kept getting better and better,” she said. “And I thought, ‘Now, this is the way it was supposed to be the first time.’ ”
In March 2012, seven months after her seventh shoulder operation, she was discharged from PT and postoperative care. Although she is careful with her new shoulder, she can play golf, do water aerobics, kayak and walk her dog without pain.
So does Williams ask patients about metal allergies before he operates?
“I should probably ask more than I do,” he said, adding that the standard of care does not require such questions. “But it probably makes sense in talking to patients, especially women, to be a little more inquisitive and see if they have a nickel allergy.”
Harrod, who credits Williams with “giving me my life back,” believes such questions are essential and could have saved her three years of pain. “I also learned about being your own advocate and not just sitting there and saying, ‘Oh okay,’ ” she added.
During her final visit with Williams, she recounted her ordeal to the orthopedics fellow accompanying him. “I said, ‘I’m doing you a favor. You’re learning about this, and because of me you’re not going to let your patients go through this.’ ”
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