"I was just scratching myself": the medical mystery of a woman's tireless itching

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Cameron Cottrill for The Washington Post

Leslie Lavender knew that the dress she wore for her younger daughter's wedding in April 2017 was unusual for the mother of the bride. But the dark trousers and a long-sleeved shirt, he decided, were the best way to hide the damage caused by an incessant, relentless itching of antihistamines, dietary changes and special creams.

"I was just scratching myself," recalls Lavender, then in his sixties, who lives in Stockton Springs, a small town 110 miles north of Portland, Maine.

The retired nurse spent more than a year seeing a variety of specialists, each of whom was disoriented by the problem that was ruining Lavender's life.

A consultation with a Boston expert in June 2018 proved to be crucial. He made the elusive connection between Lavender's relentless itch and an event that happened almost a decade earlier.

"When he said, I can help you," Lavanda recalls, "it was a miracle."

Attack of the gallbladder

In January 2010, while the last night of a cruise around the Panama Canal, Lavender experienced a severe attack on the gall bladder. He had suffered attacks before, but this incident was much worse. The severe abdominal pain allowed her to double for hours.

"I come from a long line of women who ended up losing their gall bladder," he said, referring to his mother and his grandmother.

At home in northern Kentucky, where she and her husband, Michael, an obstetrician-gynecologist, lived, Lavanda underwent an ultrasound, which revealed a gallic stone the size of a peanut that blocked her gall bladder. The pear-shaped organ is found under the liver and stores bile, which aids in the digestion of fats.

Shortly after Lavanda suffered a Laparoscopic cholecystectomy, a common operation to remove the gallbladder. Minimally invasive surgery involves the extraction of the organ through small incisions rather than a single large one. Laparoscopic surgery promises less pain and faster recovery than the conventional open procedure.

More than 90 percent of all gallbladder removal operations are now performed laparoscopically, but this method can limit the surgeon's ability to see and can cause bile duct injury – a potentially fatal error if not treated promptly. It is estimated that bile duct injuries occur in 1 in 1,000 laparoscopic procedures and less often during open procedures.

The Lavender operation seemed normal. She was discharged after spending a night in the hospital.

But a week later, he started vomiting and developed intense abdominal pain.

"I'm going to die," he told a doctor he sent for a CT scan, which revealed pools of fluid in the abdomen. Doctors have discovered a loss of bile and admitted to washing the caustic bile and solving the problem.

Three days after being discharged for the second time, Lavanda was back in the hospital, unable to hold down a mouthful of water. The doctors readmitted it and performed a procedure to make a temporary discharge, which was removed after six weeks.

After the third operation, the surgeon told Lavanda that he had an unusual anatomical variation called an accessory bile duct, also known as the Luschka conduit, which was closed to prevent further losses.

The next few months were rocky. Lavanda has developed a debilitating infection caused by Clostridium difficile bacteria, which can result from the use of antibiotics. He recovered slowly and later that year moved with her husband to 1,100 miles north of the Maine coast.

Not quite normal

In the years that followed his surgery, Lavanda said he had never had a severe recurrence of pain. But she didn't feel completely well.

"I was leading a mostly normal life and looking at my diet," he said. Acid blockers and other medicines didn't seem to help, so he stopped taking them.

During routine physicists, his internist in Maine noted a persistently high level of alkaline phosphatase (ALP). High levels of ALP may indicate liver or bone problems.

"I questioned him, but no one seemed too worried," Lavender recalled, who said that doctors believe the increase is not important.

The itching started in March 2017, while Lavender was in Omaha visiting his eldest daughter.

"It was just madness," he said. "I examined a list of possibilities: I have an eruption? Urticaria? An allergy? What am I eating?" Nothing seemed to explain it.

And little seemed to lighten it.

"I was a disaster," he recalls. He had scratched so much that his arms and legs were crossed by angry bruises, which sometimes became infected.

Lavender's internist sent her to a dermatologist, who ordered extensive laboratory tests to rule it out multiple myeloma and other cancers, as well as several autoimmune diseases that can cause intense itching.

The dermatologist gave her a steroid ointment and prescribed a large dose of oral steroids, which suppressed itching. But the ointment made Lavender's skin so thin that it began to tear. And when he stopped taking oral steroids, the itching roared again.

A second dermatologist, whom he saw in January 2018, said he thought his problem was not dermatological. He sent her to a hematologist, who ordered a CT scan and extended blood tests. Everything – except the high ALP – was normal.

The hematologist sent her to a gastroenterologist in Portland. After excluding cirrhosis and liver cancer, he told Lavender that he suspected sclerosing cholangitis, a liver disease caused by inflammation or scarring of the bile ducts.

Michael Lavender recalls the gastroenterologist who told him that his wife could be guided by liver failure and that he might need a transplant in four or five years.

In apparent anticipation of this possibility, he referred to Lavender Roger L. Jenkins, a liver transplant expert at Lahey Hospital & Medical Center in Burlington, Massachusetts, a suburb of Boston.

Jenkins, a pioneer of liver transplantation, is president emeritus of surgery at Lahey, which operates one of the most active liver transplant programs in the country.

A crucial look backwards

When she arrived in Lahey in June 2018, Lavender was discouraged.

He was finding it increasingly difficult to live with the itch he had eluded both the identification of the underlying cause and an effective treatment. And the idea that she might need a transplant was overwhelming.

"I told Michael," I love you, but I'm not having a liver transplant, "he recalled.

In preparation for his visit, Jenkins got his records from Kentucky and Maine.

"What you really need to do is go back in time," he said.

The answer seemed clear, Jenkins said, and seemed to date back to something that happened during the Lavender gall bladder intervention.

The surgeon apparently had sewn Lavender's right hand hepatic bile duct closed, mistaking it for an accessory duct. (The hepatic ducts drain bile from the liver). Over the years, subsequent scans and tests were repeatedly misinterpreted as signs of a left and right hepatic duct, when in reality they were two branches of the left duct. Lavender liver it was the source of the itch.

"Miraculously," noted Jenkins, the right lobe of the organ had not atrophied as would be expected. "This is extremely unusual," he said, "but never heard."

One of the reasons why the error may have gone unnoticed for so long, Jenkins hypothesized, could be that Lavender's anatomy differs from the norm in an unspecified way.

"Most chole-related lesions (cystectomy) are recognized at the time," Jenkins said.

A few years before he saw Lavender, Jenkins had treated a young woman with a wound similar to a gall bladder.

Jenkins recommended removing the right lobe of lavender liver to stop itching; the left lobe should grow to compensate for the missing portion. The other option was an extensive reconstructive intervention that Jenkins said might not work.

Lavender, the surgeon wrote in his consultation note, was "in agony" about the itch and had said he "didn't want to live" if the problem couldn't be solved.

Lavender was paved – and electrified.

"He only knew," he said of Jenkins. "I felt that the Lord had sent me to the right place."

The three and a half hour operation, performed nine days later, went smoothly.

It took several weeks before the itch disappeared completely and about five months before the unpleasant postoperative fatigue that Jenkins had warned to expect to disappear. The tests show that the left lobe of his liver has grown as expected.

"I feel great," he said.

Lavender wants doctors to pay more attention to its abnormal ALP, which had become increasingly elevated over the years.

"No one saw it as the canary in the coal mine," he said.

His experience, he noted, is a reminder that minimally invasive surgery does not necessarily mean simple or risk-free.

"You shouldn't think anything could go wrong," he said.

Send your medical mystery solved to sandra.boodman@washpost.com. No unsolved cases, please. Read the previous mysteries on wapo.st/medicalmysteries.

(tagsToTranslate) medical mysteries (t) gallstones (t) gallbladder (t) coleotectomy (t) laparoscopy (t) hepatic (t) misdiagnosis (t) bile duct injury (t) Roger L. Jenkins (t) Lahey L .minimniminally

1 COMMENT

  1. This story about the Leslie Lavender is confusing as hell. One minute it states that she spoke to her Doctor and the next minute it says he spoke to the Doctor. Then the last name is misspelled several times. Whoever put this story together needed some help.

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