A mystery illness and one woman's decade-long fight against misdiagnosis

It took Eser Toprak over a decade to find out what was wrong with her, as her body slowly withered away and she pleaded with doctors to look outside their narrow diagnosis.

When she was 17, shortly after leaving her home country of Turkey to live in Halifax, she began having a hard time keeping food down.

"I started vomiting first, it would happen now and then," she said. "I thought I just had indigestion like anybody else." 

Over the course of several years, as she went to NSCAD University in Halifax and worked as a waitress, she began eating less and vomiting more as the symptoms of her mystery illness worsened. It was difficult to even swallow her own saliva.

Toprak didn't know it at the time, but she had superior mesenteric artery syndrome, also known as Wilkie's syndrome. The little-known gastrointestinal disorder involves the duodenum — the first part of the small intestine — getting compressed between the abdominal aorta and the superior mesenteric artery, causing a blockage.

"It's basically like a bowel obstruction," said Toprak, now 32. "My food would go down, and it would hit the obstruction and come back up."

She's speaking out now about her grueling experience with Nova Scotia's health system because she wants to raise awareness for the condition — both for patients who might have it, and for health professionals who may not recognize the signs.

Early on, Toprak made frequent visits to her doctor's office as she searched for answers.

She said her doctor at the time appeared to believe her symptoms were the result of a mental illness instead of a physical one. He diagnosed her with anorexia and bulimia, and she was given a new diet, some antipsychotic medications, and other remedies in the hopes of opening up her appetite.

Nothing worked, she said, and there was little effort made to seek an alternate diagnosis. She was never referred for any tests, she said, other than blood and urine.

"I was in his office every week, like, begging him that things are not right," said Toprak, a Canadian citizen.

Eventually, she began to doubt her own physical symptoms, to the point where she felt insecure and unbalanced.

"I kept telling myself, 'It's in your head,'" she said. "And that made me run away from a lot of people in my life."

But in the next few years she would experience more symptoms: swelling after eating, laborious breathing, and difficulty moving her fingers. Multiple trips to her doctor and hospitals gleaned few answers, and she lost more weight.

By 2014, she was so ill she had to quit work and school. Everything came to a head in May 2015, when Toprak began vomiting blood while on a trip to Boston.

She said she went directly to an emergency room as soon as she returned to Halifax, where she was given a saline solution and told it would be an 18-month wait to see a gastrointestinal doctor.

"I felt like I was invisible all of the time," said Toprak. "I was talking, but nobody was hearing me."

Finding an answer

Frustrated, Toprak contacted her father in her home country, who suggested that she come back to Turkey and see a friend of his who was a general surgeon.

She and her partner, Husayn Eblaghi, were on a plane to Turkey within days.

Following an endoscopy, a colonoscopy and an MRI, Toprak was finally diagnosed with Wilkie's syndrome, and had her first surgery in an attempt to fix it.

But the operation was unsuccessful and left her with damage to her organs, nerves and cells. Later, she found out that she had other undiagnosed illnesses that complicated her operation.

Desperate for answers and bedridden in Turkey for the summer, she began researching Wilkie's syndrome and found a publication by Thomas Scholbach, a German doctor with expertise in vascular compression syndromes.

The online publication outlined the symptoms of a battery of abdominal compression disorders, including Wilkie's syndrome.

"There was 21 pages, and he apparently wrote it for patients like me to find what's wrong with them," said Toprak. "When I read that, I was like, 'Oh my gosh, that's me. The whole … 21 pages, that's me.'"

After some emailing back and forth with Scholbach, Toprak and her partner decided to make the trip to Germany.

"I asked Husayn, 'What should I do? My dad won't pay for Germany, I have no money, how am I going to go there?'" Toprak said. "And he said, 'That's what the credit card is for.'" 

'I felt like Superman'

Toprak and Eblaghi went to see Scholbach in Leipzig, Germany, in September 2015, as soon as she was well enough to travel. 

There, the doctor diagnosed her with a number of other compression syndromes, including nutcracker syndrome, Dunbar syndrome and May-Thurner syndrome. It was a relief to finally know.

"When I left that office, I felt like Superman," Toprak said, wiping away tears. "It proved who I was."

Between October 2015 and August 2018, Toprak travelled back and forth between Germany and Canada and had about a dozen surgeries.

Since initially speaking with CBC News, Toprak has had further complications and has travelled back to Germany to see Scholbach. 

She's now staying with family in Turkey as she waits for results in case she needs to make a speedy return to western Europe.

Treatment 'not complicated,' says doctor

Wilkie's syndrome can be treated in Nova Scotia, according to Dr. Mark Taylor, central zone executive medical director of the Nova Scotia Health Authority. 

He said while it's not a difficult condition to diagnose, it's very unusual. He said he spent 30 years as a general surgeon and he's only seen one case. The biggest challenge is just thinking of it as a possibility, since it's so rare.

"The diagnosis is quite simple with a CT scan in most cases," he said. "Once the diagnosis is made, frequently they do need surgery, but the surgery is not a complicated operation."

According to the U.S. non-profit group Superior Mesenteric Artery Syndrome Research Awareness and Support, Wilkie's syndrome affects fewer than 13 out of 100,000 people.

While the average family doctor in Nova Scotia would not be expected to know about the condition, Taylor said general surgeons should have the knowledge to consider Wilkie's as a diagnosis.

He noted the syndrome worsens over time and can lead to malnourishment and significant metabolic problems if left untreated. These issues can make surgical treatments more risky.

The go-to treatment in Nova Scotia would be a small bowel bypass procedure called a duodenojejunostomy. That was what Toprak had received in Turkey.

Later in Germany, she received an SMA transposition — where the superior mesenteric artery is reconnected to the aorta at a lower position — but Taylor said vascular surgeons in Nova Scotia don't recommend this procedure for treating Wilkie's because it is a "much bigger and more dangerous operation."

Taylor said he can't speak to specific cases — and stressed that he had nothing to do with Toprak's case — but he said her circumstances sounded "unfortunate."

Toprak was never referred for a CT scan while she was seeking a diagnosis, but she has since had one in Canada during a checkup. The results of the 2016 scan, viewed by CBC News, confirmed many of the problems identified in Germany.

'You guys left me alone to die'

Toprak said her long, difficult health-care journey came at a big cost.

"Financially, we are dead. I'm tired, and I don't think we can afford another surgery," she said. "My dad is maxed out, everybody's maxed out. And our credit cards … we can't even pay the interest. It's bad."

Between the maxed-out credit cards, a line of credit, and loans from friends and family, the young couple estimates they've spent about half a million dollars on her treatments so far, with each German hospital stay costing about $30,000.

Even after her diagnosis and initial treatment, Toprak said she had difficulty getting in to see doctors in Halifax, though she noted her current family doctor is more understanding than her previous one.

She continues to see Scholbach in Germany because he's an authority when it comes to abdominal compression disorders, and her experience in trying to get help in Nova Scotia has shaken her trust in the health-care system.

While Toprak is grateful for Canada's free health-care system, she said she fell through the cracks. She believes this could have cost her her life if she hadn't taken matters into her own hands.

"You guys left me alone to die," she said. "The reason I left this country was because I was dying. How long can I go with vomiting bile and vomiting blood?"

Eblaghi, Toprak's partner, said she's remained strong throughout the ordeal, but the two of them are growing weary with the multiple surgeries, the constant uncertainty and their mounting pile of debt.

"It's very difficult to watch somebody that you love go through all this," he said. "It's definitely taking a toll."

Elblaghi, who also went to NSCAD, said he's staying in Halifax to work on projects and save money while Toprak stays with her family in Turkey.

Creating awareness

Toprak hopes her story will raise awareness for Wilkie's syndrome — which affects women more than men — so other potential patients can advocate for themselves before their own symptoms worsen.

"My whole life I was sick," she said. "Maybe if they were diagnosed earlier, I would have been cured with a couple of surgeries, it wouldn't be this much damage."

Over the past few years, she and Eblaghi have been documenting her journey through social media. Toprak is also a member of a number of Facebook groups for people with Wilkie's syndrome.

Toprak said since posting about her experience, she's heard from people around the world who have had similar stories — especially from other girls and women who had been misdiagnosed with eating disorders.

"Girls messaging me, saying,' ... I want to go to Germany too. Can you help me?'" she said. "And then it just became like every day I was receiving emails all around the world."

While Toprak is doing better now, she still has a long road ahead of her as she tries to recover from the damage done to her body due to the conditions going untreated for so long. 

Eblaghi added that more health-care professionals need to know about Wilkie's.

"It's about creating awareness in the medical field and getting the ball rolling so more research can be done," he said.

He doesn't know how much longer his partner will have to stay in Turkey, but Eblaghi hopes to have her home — and with more answers — soon.

"It has a psychological toll eventually, because it's preventing you from living," he said. "You have dreams and you have ambitions and all these things that you want to do, but you're being held back by this."

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