When the Philadelphia specialist gently tweaked a spot deep inside Heidi Gribble Camp’s back, she screamed, an expression of both anguish and elation.Camp’s vindication was fueled in large part by her persistence. In 2006, her complaints of severe abdominal pain early in her first pregnancy were brushed aside by her doctor — until she nearly bled to death from a ruptured ectopic pregnancy. That near-fatal hemorrhage was swiftly followed by her sudden lapse into unconsciousness and the discovery of large blood clots in her lung and abdomen, requiring additional emergency surgery.
“I told him, ‘You found the pain, this is the best day of my life!’ ” Camp, 32, recalled saying during the June 18 procedure at the Hospital of the University of Pennsylvania. The fact that the interventional radiologist, an expert in minimally invasive surgical procedures, was able to pinpoint and replicate the stabbing pain she had suffered for more than eight years was sweet validation. It proved that Camp wasn’t exaggerating her pain and that it had an identifiable, physical cause, something a series of doctors had come to doubt.
Months of recovery followed — as did the first episode of searing back pain. But doctors in Florida, Toronto and Northern Virginia, where Camp lived at various times with her husband, a recently retired professional baseball player — told her they could not find a reason for her agony. Some implied that she was dramatizing normal aches; others rebuffed her inquires about a potential cause that would later prove to be prescient.
It took the fortuitous involvement of a physician friend several months ago to help uncover the answer. Without that, it is likely that Camp’s diagnosis would have been delayed further, subjecting her to the risk of serious injury or sudden death.
“Heidi is a poster child for this” problem, said Scott O. Trerotola, chief of interventional radiology at Penn, who treated her. “There is relatively little recognition [of it] among anyone except interventional radiologists.” Doctors in other specialties — cardiology, gynecology, emergency medicine and orthopedics — whom Camp consulted over the years were probably unfamiliar with the phenomenon, he said. By contrast, Trerotola and his team have treated more than 150 patients.
Camp has always had a high tolerance for pain; as an elite college athlete, she was accustomed to shaking it off. Once, at Virginia’s James Madison University, where she played Division 1 soccer, she drove herself to the ER with a broken arm.
But a lesson from her freshman year became a touchstone upon which she would later draw. From childhood, Camp had suffered from intermittent, debilitating stomach pain that had eluded diagnosis. Doctors discovered the cause after she entered JMU and removed her diseased gallbladder; her pain vanished. “Part of me thinks that because of that experience, I thought that if I figured out what was causing a medical problem, I could get it solved,” she said.
Camp was keenly aware of chronic pain for another reason: Her mother had been seriously injured in a ski-lift accident that had required numerous reconstructive surgeries. Camp grew up watching her struggle with the crushing burden such pain imposes and did not want to repeat her mother’s experience.
In 2006, shortly after moving to Florida, where her new husband, pitcher Shawn Camp, was trying out for the Tampa Bay Rays, she discovered she was pregnant. She soon developed severe bouts of abdominal pain that her doctor and some relatives dismissed as the jitters of a first-time mother.
One day during her second month of pregnancy while her husband was out of town, Camp was home alone when she doubled over in pain. Unable to walk, she crawled to the phone and dialed 911 before collapsing. When the EMTs broke down the door, they found her on the bathroom floor, her blood pressure dangerously low. Rushed into surgery, doctors diagnosed a ruptured ectopic pregnancy in her right fallopian tube, which had burst.
A day later, her family discovered her lying, unresponsive, in her hospital bed. After an emergency resuscitation, surgeons found a large blood clot in her lung and gave her heparin, a drug that thins the blood to prevent the formation of clots.
But a few days later, after complaining of severe stomach pain and a racing heart — which nurses attributed to anxiety over losing the pregnancy — a CT scan revealed two softball-size blood clots in her abdomen. Heparin alone wasn’t effective, so a surgeon implanted a Gunther tulip filter. The small metal device,also known as an IVC filter, is shaped somewhat like an umbrella. It is implanted in the inferior vena cava, the largest vein in the human body, which returns blood from the lower extremities to the heart. The filter is designed to trap large clots, preventing them from migrating to the lungs and heart, where they can be lethal.
Soon after the device was implanted, Camp recalled, “I was up and walking around” as though she hadn’t nearly died twice. “No one could believe it.”
The trauma surgeon told Camp that the filter, although designed as a temporary device, did not need to be removed; her OB-GYN concurred, saying it would prevent clot-related problems in future pregnancies.
After the first episode of back pain in 2006, Camp thought she might have overdone a workout. But when the pain persisted, she sought treatment in an emergency room; a doctor told her the problem might be caused by a cyst that was detected on her right ovary, or from scar tissue following surgery.
Weeks later, the pain disappeared; in 2007, she gave birth to a son after an uneventful pregnancy. The pain recurred in 2008, when she was living in Toronto. This time, a doctor diagnosed sacroiliac joint dysfunction, pain in the lower back that sometimes occurs as a result of overexertion. Soon, the pain vanished again.
In 2012, back in Northern Virginia, where she spends summers near her family, Camp consulted a cardiologist because she was having episodes in which her heart raced and her face flushed. He found nothing alarming. Because she was done having children — her second child was born in 2010 — she asked the cardiologist whether the filter should be removed. After performing an ultrasound, he told her that removing it was too risky and that the device shouldn’t cause a problem.
In May 2013, Camp began having periodic bouts of nausea and vomiting, along with severe back pain. She consulted her internist about those symptoms and an unintended 10-pound weight loss. He attributed her problem to stress: She moved frequently with two young children, and her husband was often on the road. Eventually the pain receded.
By January 2014 it was back — and worse than ever. “I was drinking Ensure because I really couldn’t eat,” Camp recalled. Her only relief came from lying on a heating pad. She sought treatment from an orthopedist, who discovered a bone spur in her spine, near the area of the filter, which he found puzzling; bone spurs, which are bony projections typically caused by wear and tear, are not common in young people. He sent her to a second orthopedist, who gave her cortisone shots, which didn’t help.
In April, Camp said, her gynecologist discovered that the cyst on her right ovary, first detected in 2006, had grown to the size of a lime. “I was really relieved,” Camp recalled, “because I figured this was the source of the pain.” Her gynecologist demurred, saying that such cysts were harmless and did not usually cause pain.
In tears, Camp said, she begged him to operate. “The pain was so horrible I wanted to die,” she recalled. “I said, ‘You have to do this.’ ” Reluctantly, he removed the cyst, ovary and fallopian tube. But when the anesthesia wore off, Camp realized the pain was undiminished. “I thought, ‘Oh, my God, what can this be?’ ”
At the insistence of a friend who was alarmed by her deterioration, she agreed to see a third orthopedist. This time, an X-ray did show a possible cause of her back pain: a bone spur had formed on her lower spine, near the filter. The orthopedist advised Camp to consult a cardiothoracic surgeon to see if the filter could be removed. After the surgeon’s office told her he did not remove IVC filters — a difficult and risky procedure — Camp scoured the Internet and discovered she needed a different kind of specialist altogether: an interventional radiologist. She quickly discovered that specialists with the most expertise included those at Penn and Stanford University Medical Center. She called Stanford and was told to send her records and a CT scan for review.
She then turned to a physician friend, Michael Brucculeri, a Tampa area kidney specialist, for help scheduling a CT scan there, where her family was living during the school year. Brucculeri had grown increasingly alarmed by Camp’s condition.
But the CT scan performed June 4 was read by the local radiologist as normal, with no sign of filter involvement. Camp said she was extremely upset by the interpretation and called Brucculeri. He told her to bring the computer disk containing the scan to his home that night so he could review it. Brucculeri said that what he saw was scarcely normal: Several legs of the filter appeared to be sticking out of the vena cava; one was touching the duodenum, the upper section of the small intestine, a situation that might account for Camp’s nausea. The bone spur seemed to have been caused by the constant friction on her vertebrae from a broken piece of the filter.
Brucculeri said he immediately e-mailed images to several colleagues, including a local interventional radiologist. All agreed with him, he said. The interventional radiologist said that the broken filter might be the cause of Camp’s back and abdominal pain and should be removed in any case. He recommended that Camp go to Penn, where he had trained.
The next day, Brucculeri called the Tampa radiologist who had read the CT scan as normal. After a discussion, the radiologist amended his report to include a description of the broken filter — but not before his original report indicating nothing abnormal had been sent to Stanford.
“Not all physicians, like not all car mechanics, are created equally,” Brucculeri said. “I don’t know why he missed it. Maybe he was distracted.”
Problems surrounding vena cava filters are not new. In 2010, four years after her filter had been implanted, the Food and Drug Administration, alarmed by more than 900 reports of injury and death in patients whose filters migrated or broke, in some cases fatally piercing their heart, warned that the devices should be removed once the risk of a clot subsides. That warning was repeated in May 2014; the longer the device was in place, the greater the risk of adverse events, researchers found.
“If they don’t need it anymore, that filter should come out,” said Trerotola, who specializes in complex filter removal, for which his success rate is 95 percent. Cases such as Camp’s, in which the device causes severe pain, are uncommon.
In the weeks before her June 18 procedure at Penn, Camp said, she “was panicking. I kept thinking: ‘What if a piece goes to my heart?’ ” She was taking no chances: If Penn’s efforts failed, she planned to fly to Stanford a week later.
The 20-minute outpatient procedure, performed under light sedation through a vein in Camp’s neck, was a success; her pain disappeared almost as soon as the filter was extracted.
Although she feels vindicated, Camp is also furious: at the doctors who missed the problem, and at others who doubted the severity of her pain. She wonders what might have happened had her doctor friend not intervened.
“I think she was written off as a malingerer,” Brucculeri said. Because she moved frequently, Camp lacked a primary-care doctor who could have taken a holistic look at her case. “This just shows that patients need to be their own best advocate.”