Four medical mysteries solved
"I hope this helps someone else."
I hear that every time I write about a patient's often tortuous and usually prolonged journey through the medical system, featured each month in The Washington Post's Medical Mysteries column.
I began writing the column in 2007 with twin goals: to explain the surprising complexity of medical diagnosis and to document the impact on patients and families when the process goes awry. Most stories are told from the perspective of a patient or close relative, while others reflect the viewpoint of the doctor or health-care worker who figured out what was wrong after others — sometimes many others — failed.
So how often does this desire to help others actually pan out? While there is obviously no way to measure the ripple effect, sometimes I learn about successes as dramatic as the original cases that served as the catalyst.
Here are four stories of people solving their mystery thanks to the column:
A PAINFUL FINGER
When hand surgeon Raymond A. Pensy walked into an exam room at the University of Maryland Medical Centre in June 2014, he was confronted by an unusual sight.
"Doc, look what I've got for you," Pensy remembers R. Lance Gardner saying. The 71-year-old Arlington, Virginia resident's right pinkie "was sticking straight up like he was going to drink a cup of English tea," Pensy recalled. Next to Gardner sat a week-old Medical Mysteries column featuring one of Pensy's patients, Cheron Wicker.
After seven years, two unnecessary neck surgeries and pain in her index finger so searing she once considered chopping it off, Wicker had consulted Pensy in 2012. She had previously seen more than half a dozen specialists, several of whom thought she had a pinched nerve in her neck; all had missed the rare, exquisitely painful vascular growth under her fingernail called a glomus tumour. Pensy had quickly diagnosed the problem and removed the benign tumour, earning Wicker's undying gratitude.
Pensy was surprised when Gardner, a retired real estate consultant, told him he was sure he had been living with the same problem — for 35 years.
"As a physician," Pensy said, "you're somewhat sceptical. What are the odds that someone is going to come in with the exact same diagnosis [of a rare tumour] they read about in the newspaper?"
Gardner told Pensy that he had consulted doctors years earlier, before giving up "in disgust and frustration" when they were unable to diagnose the problem. He lived with pain that routinely disrupted his sleep and once contemplated smashing his finger with a hammer. After reading Wicker's story, he located her phone number and talked to her for nearly two hours. Then he made an appointment to see Pensy.
The hand surgeon spotted the telltale bluish discolouration on Gardner's fingernail that indicated a glomus tumour. The physical exam was memorable: when Pensy gently touched his little finger, Gardner shot out of his chair and circled the room twice. "It was obvious the pain was excruciating," Pensy said. An MRI confirmed the diagnosis, and on June 13 Pensy removed the tumour in a 15-minute procedure.
"This is the most important surgery I've ever had," said Gardner, who has undergone more than a dozen operations, including total knee replacements. "I feel resurrected."
Wicker's case also helped 82-year-old Lois Riemer of Camp Creek, W.Va. (population 315). For more than 15 years, the former medical secretary had suffered from intense, intermittent pain in her left pinkie, a problem an orthopaedic surgeon and a neurologist were unable to diagnose. "I thought, 'Well, I'm going to have to learn to live with it,' " she said.
A friend in Northern Virginia mailed Wicker's story to her. Riemer said that her internist had never heard of a glomus tumour but referred her to a hand surgeon at Johns Hopkins Hospital. The specialist removed the tumour in November. "The pain was gone immediately," she said.
Pensy has submitted a description of Gardner's case, which he says may represent the longest undiagnosed glomus tumour on record, for publication in the New England Journal of Medicine. "People are out there living for many years and they're absolutely miserable," the hand surgeon said. "I'd really like [other doctors] to pay attention to this diagnosis."
'IT COULDN'T BE THAT SIMPLE'
Alice McDaniel sat at her kitchen table with her morning coffee in August 2014 contemplating the many similarities between her case and that of Heidi Gribble Camp. The wife of a former professional baseball player, Camp, 32, had suffered for seven years with increasingly debilitating abdominal and back pain that some doctors told her was psychosomatic. In fact, her pain was the result of a broken and potentially lethal medical device, an IVC filter. The filter had been implanted in her inferior vena cava, the largest vein in the body, to prevent blood clots after emergency gynaecological surgery. It had penetrated the walls of the vein and one spiky leg was poking her small intestine, causing constant nausea.
The filter was removed by Scott Treretola, chief of interventional radiology at the University of Pennsylvania, on June 18, 2014, which Camp called "the best day of my life."
BROKEN DEVICE CAUSED HER PAIN: Alice McDaniel is angry that doctors missed her problem for so long; reading about a similar case helped her find relief from the pain she suffered since 2007. Photo: Supplied.
"My first thought was 'It couldn't be that simple,' " McDaniel, 60, remembers thinking when she read the story. A retired teacher who lives in Prince William County, Virginia, McDaniel had suffered from worsening bouts of severe abdominal pain since 2007. She had received the same filter as Camp in the same year — 2006 — following abdominal surgery. Like Camp, McDaniel had been variously told that the filter was fine, that it could remain in place for life and that it should not be removed — none of which turned out to be true. McDaniel had also endured numerous scans, several hospitalisations and procedures performed by a variety of specialists, who concluded that her pain was probably caused by scar tissue from her original surgery.
McDaniel immediately called her internist, who referred her to a local interventional radiologist. The radiologist examined McDaniel's previous CT scans and found that as far back as 2007, the legs of the filter, which is shaped like an umbrella, had penetrated her pancreas and inferior vena cava. And while the CT scan reports noted the presence of a filter, its position was never evaluated, a description that might have revealed the cause of her pain. The radiologist told her that the filter needed to come out. In 2010 and again in 2014, the Food and Drug Administration had urged doctors to remove filters that were no longer needed, citing more than 900 reports of severe injury and death.
McDaniel then contacted Treretola, who pioneered a method of removing the devices that has a 95 per cent success rate. Her November 5 procedure went without a hitch.
"I'm fine, my pancreas is healed and the pain is gone," McDaniel said. Like Gribble, she is angry that so many doctors missed her problem for so long.
Her case may have its own ripple effect. At Trerotola's instigation, Penn is considering a new protocol that will require that IVC filters be evaluated and described in CT scans. Radiologists, he said, "need to be more cognisant of these removable filters."
Mike Beall, director of a Washington NGO, couldn't sleep one night in July 2013, so he surfed the Internet. He began reading the Medical Mysteries column about Jan Harrod, a Northern Virginia woman who endured years of gnawing pain that began after a shoulder replacement. Harrod's problem turned out to be an allergy to the nickel in her shoulder implant. The uncommon allergy has been documented for decades in knee and hip replacements; the FDA advises doctors to ask patients about metal allergies before surgery.
Beall forwarded the story to his friend Kerri Smith, a marketing specialist in Simpsonville, South Carolina, who had been suffering from severe, unexplained jaw pain. Despite months of intravenous antibiotics and several surgeries, doctors did not know what was causing the persistent golf-ball-size swelling on the right side of her face.
Kerri Smith had surgery after reading a column about Jan Harrod, who suffered swelling and pain from an undiagnosed allergy to nickel. Photo: Gwinn Davis Media.
In 2010, four years after a botched root canal, Smith's badly inflamed right salivary gland had been removed by an ear, nose and throat surgeon at the Medical University of South Carolina because it was not draining properly. During the surgery, a dozen surgical clips had been used to clamp off blood vessels; they were left in place.
After that operation, Smith's health deteriorated. In 2011, her ENT surgeon M. Boyd Gillespie sent her to the Mayo Clinic for a week-long evaluation that revealed little.
By 2013, Smith was so despondent that she had contemplated suicide. "It was so painful and so hard feeling there was no light at the end of the tunnel," she recalled.
Harrod's case provided a lifeline. Smith also had a lifelong allergy to nickel — cheap jewellery gave her a rash — but she wondered how the clips, which were stainless steel, could be the culprit. She did her own research and found that the clips also contained nickel. She saw an allergist, whose testing confirmed the nickel allergy. When she asked Gillespie to remove the clips, he reluctantly agreed.
"I thought it was a little weird," he said, "but she's a reliable patient and I'd been following her for four to five years." Gillespie said he didn't know what else to do for her.
Six weeks after the November 2013 operation, Smith's swelling and pain were dramatically reduced. "She was remarkably better," Gillespie said. When he saw her last fall at a one-year follow-up, he barely recognised her. Smith was pain-free and had lost 60 pounds.
Her case "certainly raised my awareness and changed my practice," Gillespie said. He now asks patients if they have a nickel allergy before surgery.
Smith, 50, says she feels "fabulous" and believes Harrod's case saved her life. "I wouldn't have survived another year. Now it's my mission to tell everyone who'll listen about this."
By December 2013, Kerry Logan, the owner of a software company in Los Angeles, was at his wits' end. He had spent four months bouncing among a series of doctors, searching for anything that would stop his incessant scalp itch. A Beverly Hills dermatologist diagnosed folliculitis, a bacterial infection of the hair follicles that causes little bumps, but none of the many shampoos or treatments Logan was given helped. A scalp biopsy revealed nothing. One night, Logan said, the itching got so bad he went to an emergency room.
After work, Logan routinely sat on his living-room sofa searching for answers on his iPad. One night he typed "scalp itching worse at night." Up popped the 2010 column about Washington lawyer Susan Benda, who had suffered for more than a year with a problem that had been missed by three dermatologists: head lice. The allergist who diagnosed it said Benda had the worst case he had seen in a decades-long career.
"It's one of those movie moments I'll always remember," Logan, 45, recalled recently. "First I thought, 'no way.' Then I thought, 'This is it!' " It was 10 pm, but he immediately walked to a nearby drugstore and bought lice-killing shampoo. After he used it, his girlfriend, a hairstylist, carefully examined his salt-and-pepper hair. There she found the unmistakable signs of lice infestation. (Head lice are nocturnal — the reason Benda's and Logan's itching was worst at night.)
Logan said his case was so bad that it took several treatments to eradicate the pests, which left his scalp painful and tender but free of itching and bumps.
Looking back, he believes he got lice four months earlier, when he stayed in two small motels en route to a camping trip in Utah. Logan says he now closely inspects bedding when he travels and has not had a recurrence.
"I was so relieved and then so angry at my doctors that I made an appointment with the dermatologist to tell him," he said. Logan said the specialist insisted he had folliculitis.
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