Medical Mystery: At night she suffered through searing pain, but by morning it vanished

On nights that the pain became unbearable, Marion Millhouse Barker would get out of bed, head for the guest room, shut the door, and scream as loud as she could.

"It helped," said Barker, recalling the strategies she devised to cope with the stabbing sensation on the right side of her rib cage that left her doubled over. "I have a high pain tolerance," she said, but this pain proved to be more excruciating than unmedicated childbirth or acute appendicitis.

On other nights, Barker, now 65, headed for the shower. She aimed the pulsating spray of water, as hot as she could stand it, at the locus of her pain.

Oddly, the pain never struck in the daytime.

Her problem began in the fall of 2012, a year after Barker sold the suburban Maryland medical communications firm she co-founded and decided to retire.

Barker had been doing a lot of kayaking to stay in shape. When her rib cage began to hurt, she suspected she had pulled a muscle and tried to take it easy.

In January 2013, when the pain hadn't gone away, she consulted her internist. The doctor ordered a chest X-ray, an ultrasound of Barker's gallbladder, and a liver test. All were normal.

The internist told Barker she suspected that the pain was the result of costochondritis, an inflammation of the cartilage in her rib cage, probably related to kayaking. The doctor advised that she take a prescription-strength nonsteroidal painkiller to reduce inflammation.

It didn't help.

For the next year or so, Barker, whose husband is a retired physician-researcher at the National Institutes of Health, coped with the pain on her own. She tried various over-the-counter remedies.

"I thought I had a diagnosis," she said, thinking that a return visit to the doctor would be "fruitless."

But Barker grew increasingly worried about the attacks, which left her wrung out and exhausted. They usually began around 7 p.m., then subsided after a few hours, sometimes recurring around 5 a.m. for a few hours before disappearing. Her days were pain-free.

"It was sporadic enough that I learned to live with it," she said. But Barker was puzzled during a 10-day family vacation in July 2014. "I didn't have one attack."

Then a month later the episodes were back, and occurring nearly every night.

Over Labor Day, when her brother, a San Francisco cardiologist, was visiting, Barker asked his advice. He told her that the pain in her side might be emanating not from her rib cage but from her back, possibly her upper spine. Its sharp quality was suggestive of nerve pain, not inflammation, he said. And the pain relievers she had been taking for months don't work for nerve pain.

His advice: Get an MRI scan.

A few weeks later, Barker returned to her primary-care doctor. She recounted her continuing symptoms and relayed her brother's observations. The doctor ordered two tests: an MRI and a CT scan of her spine.

The tests revealed the cause of Barker's pain: A large tumor, roughly the size and shape of a small cocktail frank, was lodged inside her spinal canal. It was pressing on the T6 vertebra, located below the shoulder blade.

Barker's family physician referred her to a pair of neurosurgeons, Shih-Chun "David" Lin and Quoc-Anh Thai, who performed spinal surgery together at Suburban Hospital in Bethesda, Md. (Thai recently left for a job in Arkansas.)

"Usually you don't want two cooks in the kitchen," said Lin, Washington-area division chief of Johns Hopkins neurosurgery. But in the case of spine surgery, he continued, an additional pair of hands and eyes can be invaluable.

The neurosurgeons told Barker they suspected that the growth was a schwannoma, a rare, slow-growing tumor that is usually benign. But, Lin emphasized, the surgeons told Barker that until they operated, they wouldn't know for sure what it was.

Schwannomas arise from nerve cells called Schwann cells, which are part of the peripheral nervous system. In most cases they occur by chance for unknown reasons and can develop anywhere in the body. Some never cause problems, but in other cases radiating pain of the kind Barker experienced can occur, as can hearing loss if the tumor is located in the head or neck.

"This kind of tumor is not that common overall," Lin said. Surgeons must weigh the risks and benefits of removing the tumor, which can be tricky.

Lin said there was no known reason that Barker's pain occurred only at night, not in the daytime. "Sometimes it's the opposite," he said.

Barker said that the surgeons recommended operating "sooner rather than later" because of the severity of her pain and because they worried that if left too long, it could affect her legs, causing paralysis.

Then, Barker said, "I made a stupid decision."

Her family was coming for Thanksgiving, and Barker worried she would be immobile after surgery. When the surgeons told her it wasn't an emergency, she scheduled her operation for early December.

But in the intervening weeks, Barker's pain intensified and her ability to walk began to be affected.

She also grew increasingly nervous about something the surgeons had told her: Sometimes, even after the tumor is removed, the pain doesn't go away.

"I just couldn't believe that," she said. "I remember saying to my husband that I can't keep doing this if it doesn't get better."

Luckily for Barker, it did. Her operation, which was supposed to take several hours, lasted only 90 minutes because the tumor was relatively easy to remove. "It was encapsulated," Lin said, "not stuck to the spinal cord."

Although the rib pain vanished quickly, recovery from the operation took more than a year. Barker also needed three months of physical therapy to regain her ability to walk normally. She has fully recovered.

Her advice to others facing prolonged unexplained pain — particularly if it is severe — is simple: Don't do what I did.

"Now that I can stand back," she said, "I can see it was an issue that was relatively easily fixed. I think waiting so long [to return to a doctor] was a big mistake."