After years, Virginia woman finds answer to mystery illness

SPOTSYLVANIA, Va. (AP) - Robin Schrader felt like a cord was twisted around her abdomen_and getting tighter all the time.

She felt sick to her stomach, day and night, and had digestive issues that she’d rather not discuss. When the “tightening” was at its worst, she could consume little more than ginger ale and saltine crackers.

Then there was the pain and high blood pressure that came with her mystery illness.

Schrader, now 43, spent two years in the Army from 1994-96 and always enjoyed running or riding a mountain bike. She got to the point that any exertion - or meal - would bring on pain that made her double over.

But the hardest thing for the Lake Anna woman to stomach was the reaction from doctors.

For 10 years, she consulted specialists and shelled out co-pays for expensive tests. She had one diagnosis after another, as she was told:

It’s an autoimmune disorder.

Irritable bowel syndrome.

Multiple sclerosis.

Stress. Allergies. Gallbladder.

One doctor said there wasn’t anything wrong with her. Another paid so little attention as she talked that she got up and walked out of his office.

“I saw a lot of doctors who were, quite frankly, rude,” she said. “And very dismissive.”

Schrader got tired of the negative attitudes and test results. She stopped making appointments - until she passed out one day in September 2009.

She’s a social worker for Spotsylvania County schools, and her supervisor said she couldn’t return without a doctor’s clearance.

Schrader hightailed it to the nearest walk-in clinic. She figured the white coat would take a cursory look, check her vitals and write a note saying she was good to go.

Instead, the appointment changed her life.

Dr. Clifton Sheets at the Courtland Prime Care, off Courthouse Road in Spotsylvania, did something Schrader hadn’t expected.

“He actually listened to me,” she said.

Sheets saw a young, physically active woman with a raft of digestive complaints - and blood pressure through the roof.

“There was just no explanation for why it would be that high,” Sheets said.

He suspected an artery was being pinched. Like a section of garden hose with a kink in it, a pinched artery can cause the blood flowing elsewhere to increase in velocity, causing blood pressure to rise.

Sheets ordered a magnetic resonance imaging test that looks specifically at blood vessels.

It didn’t confirm the ailment he suspected, but showed that Schrader did indeed have a pinched artery elsewhere. She was diagnosed with an extremely rare condition called median arcuate ligament syndrome, or MALS.

There’s a ligament - a band of tissue that connects one bone or cartilage to another - that goes around the aorta to connect the diaphragm to the spine. With MALS patients, the ligament presses too tightly on the celiac artery, a major branch of the aorta that delivers blood to the stomach, liver and other organs in the abdominal region.

When that happens, the ligament “acts like a hammer and the celiac axis acts like an anvil, squeezing the nerves in between,” according to the Cleveland Clinic website. “This causes a number of symptoms, such as pain in the abdomen, that can be made worse by eating or activity.”

After all the rigmarole Schrader endured, she couldn’t believe she finally had a diagnosis.

Sheets underscored his role in her mystery illness, saying even a blind squirrel gets an acorn every now and then.

“It’s not because I’m some great diagnostician. I just happened to order the right test,” he said, then added: “It was the right test for the wrong reason.”

Schrader came to learn just how rare her condition was - and how she was an oddity, even among the rarest.

“I’m a unicorn,” she said. “I look fine, but my body’s weird.”

The Cleveland Clinic estimates that 10 percent to 25 percent of the population has some compression of the celiac artery, but no symptoms. Only 1 percent of those with the defect actually have the syndrome known as MALS, according to the Radiological Society of North America, and all the problems that come with it.

Likewise, more than 90 percent of MALS patients can have minimally invasive surgery to relieve the compression.

Not Schrader.

In 2010, she had to be cut open 10 inches, from between her breasts to above her belly button. Dr. Kenneth Cherry, a vascular surgeon at the University of Virginia Health System, widened the celiac artery so could blood could move through it freely when her diaphragm moved up and down.

“I felt great,” Schrader said. “The first thing I said to my husband (Mike) was that I can breathe again.”

She was doing so well, she once again ate broccoli and meat, salads and fish - all the foods she couldn’t get near when the artery had constricted and caused such pain.

She started exercising again and even ran the Marine Corps Historic Half in Fredericksburg in 2011.

Three years after the surgery, symptoms started to return.

Schrader didn’t want to acknowledge them. She put her head in the sand, telling herself she’d had surgery to fix the problem once, it couldn’t be happening again.

As her condition deteriorated, she went back to Sheets, and another scan showed the same artery was compressed again.

She had surgery No. 2 in 2014.

There was a lot of scar tissue from the first operation, so this time, Cherry used fatty tissue from the cavity of her abdomen to wrap around the artery “like insulation on a wire,” Schrader said.

Scar tissue doesn’t adhere to fat, and Cherry hoped the fat wrap would keep the artery intact.

It did - for about three years.

When symptoms returned again, Schrader consulted with University of Virginia surgeons once more. This time, she also saw Dr. Ziv Haskal, who said he didn’t know much about MALS, but knew about placing stents in arteries throughout the body.

He did other tests that showed her celiac artery wasn’t just pinched; it also had a dent in it. It’s supposed to look like a linear tube, branching out from the aorta, but Schrader’s resembled a monkey wrench turned on its side.

Haskal tried a balloon procedure to expand it, but that didn’t work, so he put a stent over the dented area.

That was in November, and once more, Schrader immediately felt better. Once more, she’s resumed exercising and eating right, but has no idea how long the most recent fix will last.

“It’s just uncharted to be where I am,” she said. “We don’t know where we go from here.”

Because she had such a hard time finding answers, she wanted to help others on the same path. She helped formed a Facebook support group called MALS PALS, which has more than 1,800 members. The group posts a worldwide list of “MALS friendly surgeons” as well as advice for what to do when doctors don’t listen.

“If you get that doctor who’s rude, keep moving,” she said. “Many, many people are blown off by doctors. I was many times. Even after I had my second surgery, I ran into some doctors who doubted that it could come back. Well, they were all wrong.”

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Information from: The Free Lance-Star, http://www.fredericksburg.com/