Medical Mystery: A woman’s laborious search for the cause of her searing abdominal pain

In September 2017, Juliane Potter Marx, who lives in a rural coastal community outside Bellingham, Wash., had finished splitting a half-cord of firewood when she felt an electric jolt in her upper abdomen. She assumed she had pulled a muscle, but neither heat treatments nor massage helped.

Over the next six weeks the pain intensified. One night it was so sharp that Marx, a widow, took herself to a nearby emergency room. After an MRI scan found nothing, her primary-care doctor sent her to a gastroenterologist.

Marx had undergone multiple abdominal surgeries in her life: an appendectomy at age 11; an exploratory procedure for infertility followed by two caesarean deliveries; a TRAM flap, in which abdominal muscle is harvested to help construct a new breast following a mastectomy for breast cancer at 49; and, five years later, removal of her gallbladder.

“None of these things was a problem,” said Marx, who lifts weights for exercise.

Initially, doctors thought she might be suffering from adhesions — bands of scar tissue that can form in the abdomen after surgery, but they were ruled out.

Marx spent the next four months bouncing among her family physician and two gastroenterologists: one performed a colonoscopy while the second did an endoscopic exam of her liver, bile ducts and pancreas. Both tests were normal.

“I repeatedly tried to explain that the pain wasn’t digestive in origin,” recalled Marx, who had no symptoms such as diarrhea, heartburn or vomiting. Her pain was located in a specific spot on the right side of her abdomen just below her ribs. Sitting was intensely painful; Marx said the only way she could get remotely comfortable was to change position frequently. Walking helped.

In February 2018, Marx drove to Seattle to see a third gastroenterologist, who performed a gastric emptying study and a hydrogen breath test to check for a blockage or intestinal overgrowth. Both were normal.

She had an abundance of tests, Marx said, “but I had no diagnosis.”

Her interactions with doctors and their staffs had become increasingly unpleasant. One gastroenterologist, Marx recalled, shrugged when she insisted that something was wrong. And when she tried to see a specialist she had previously consulted, the staff refused to make an appointment.

In May, her primary-care doctor prescribed oxycodone. Marx said she reluctantly began taking the opioid painkiller to get a few hours of sleep. But she frequently awoke at 2 or 3 a.m., panicky from the pain.

In July, Marx began six months of weekly psychotherapy sessions. She also embarked on months of physical therapy.

“They were phenomenally helpful,” she said of both, but did nothing to alleviate her pain.

That month, the former medical transcriptionist and technical writer for Boeing launched her own search. “I felt I had no hope other than to find help on my own,” Marx said. She spent weeks poring over medical sites and shelled out more than $400 for access to journal articles.

Among the studies she unearthed was a 1926 report by Philadelphia surgeon John Carnett, who devised a simple bedside test to help pinpoint the location of chronic abdominal pain. Pain originating in the abdominal wall typically can be isolated to a specific spot; it is often overlooked and mistaken for visceral pain, which originates deeper in the abdomen and tends to be diffuse. Not infrequently, unexplained abdominal pain is attributed to a psychological disorder.

Carnett’s test is a scientifically validated way to help differentiate wall from visceral pain. A doctor applies pressure to the painful spot while the supine patient lifts both legs off the table or sits up. In people with abdominal wall pain, the pain increases; for those with other types of pain, it typically decreases.

An overlooked cause of chronic abdominal wall pain, anterior (or abdominal) cutaneous nerve entrapment syndrome (ACNES) occurs when the branches of the intercostal nerves to the abdominal wall are pinched as they pass through the fibrous fascia surrounding the rectus abdominis muscle. Prior abdominal surgery, pregnancy or trauma may play a role in the development of ACNES.

The problem can be treated with anesthetic injections or surgery, if shots fail.

It is estimated that as many as 1 in 50 people who visit emergency rooms for chronic abdominal pain may have ACNES, although studies have found that many doctors seem unfamiliar with it. The decline in physical diagnosis may play a role; increasingly, physicians have not been taught simple techniques such as Carnett’s test, which have been supplanted by expensive, high-tech diagnostics.

Marx was initially skeptical. But the more she read the more convinced she became that she had ACNES.

Persuading doctors would take 18 months.

Buoyed by her research, Marx said she asked her primary-care doctor to perform a trigger point injection of lidocaine, a local anesthetic. He was reluctant; Marx said that after she “begged,” he relented. The injection stopped the pain for two hours, which Marx said felt “miraculous.” Then it returned with a vengeance.

Next stop was a pain management team in Seattle. After several visits, Marx underwent a TAP block, an injection that anesthetizes the anterior abdominal wall. The anesthesiologist who performed it told her the result confirmed the ACNES diagnosis.

By then, Marx was convinced that surgery would be her best bet: Injections had worked, but the pain soon recurred.

Marx then sought appointments at a nationally prominent referral hospital but was turned down twice. She found a surgeon in the Netherlands who operates on ACNES patients and was planning a trip abroad when the pandemic shut down travel.

In March 2020, she saw a Bellingham surgeon who had never heard of ACNES and wasn’t sure what to do for Marx.

That encounter was the last straw.

Marx scheduled a meeting with her family physician and told him she was focused on “a permanent solution” — suicide — after years of being “dismissed, humiliated, ignored, infantilized and mistreated.”

He referred her to Timothy M. Whitney, whose former partner had performed her TRAM flap 21 years earlier.

A plastic surgeon for 25 years, Whitney has performed about 800 TRAM flap reconstructions. “I knew what had been done to her,” he said. “It made sense that there could be scar tissue around the ends of those nerves.”

“I told her we can go look, but there’s a chance that I’ll make you worse,” he remembered warning Marx, who was undeterred.

During Marx’s TRAM surgery, multiple branches of the intercostal nerves to the rectus abdominis muscles had been divided. Whitney found that some nerves were scarred. Twisting while chopping wood could have stretched and internally torn these nerves, triggering pain.

On May 5, Whitney released and relocated the affected nerves and removed three traumatic neuromas — scar balls of nerve endings that develop after an injury.

“I still have the sensation of a healing broken rib,” Marx said, “but the improvement is so obvious.” Her intractable pain is gone and she is back to lifting weights.

“Her whole demeanor has changed,” said Whitney, who saw her two months ago for a follow-up appointment to which she brought cookies for him and his staff.

Why did so many doctors refuse to believe Marx?

One reason, Whitney said, is that over the years she had developed a reputation as a testy patient whose demeanor could be off-putting.

In Marx’s view, Whitney’s concern and open-mindedness make him a rarity.

“Ignored patient input results in an enormous amount of diagnostic error,” she said. “This nearly killed me, and I had a fairly superficial problem.”