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

Pierre Van ZylHealth Awareness, Learn, News + Discoveries, Women’s Health

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Mystery illnesses plague many people and oftentimes, the victims of them suffer in silence. Other times, symptoms are dismissed or even ignored.

For Eser Toprak, it’s taken years to discover what her mystery illness actually is — and she wants to raise awareness for others.

At the young age of 17-years-old, Toprak moved from Turkey to Halifax, Nova Scotia, Canada. While attending Nova Scotia College of Art and Design (NSCAD) and working as a waitress, she started experiencing something strange — she couldn’t keep her food down.

At first, she thought nothing of it and chalked it up to indigestion. Over the years, however, she ended up eating less and less and was vomiting more. There were times when it felt impossible to swallow her own saliva.

What was Eser Toprak’s mystery illness?

Although Toprak was unaware of it at the time, she was suffering from Wilkie’s syndrome — a.k.a. superior mesenteric artery syndrome (SMAS).

It’s a gastrointestinal condition that occurs when the first part of the small intestine — the duodenum — is compressed between two arteries, which causes its partial or complete blockage. (1)

“It’s basically like a bowel obstruction,” said now-32-year-old Toprak. “My food would go down, and it would hit the obstruction and come back up.” (2)

Symptoms of superior mesenteric artery syndrome

While they vary, individuals with SMAS or Wilkie’s syndrome may experience signs and symptoms including: (1)

  • Getting full quickly during meals
  • Bloating after meals
  • Burping
  • Nausea and vomiting (i.e., of partially digested food or bile)
  • Obstruction of the small bowel
  • Weight loss
  • Crampy pain in the mid-abdominal area that may be relieved in the prone position or by lying on the left side

Experiencing some of these symptoms herself, Toprak would frequently visit her doctor. But — apart from blood and urine — her doctor never referred her for any tests.

In addition to her physical symptoms, all the uncertainty led Toprak to feel insecure and out of sorts with herself.

From 2014 to 2015, her condition had become so severe she would sometimes vomit blood — a symptom that would lead her to quit not just school, but her job.

“I felt like I was invisible all of the time. I was talking, but nobody was hearing me.”

What’s worse, doctors told her that it would be a year and a half before she could see a gastrointestinal doctor.

Left with little to no options, Toprak and her partner, Husayn Eblaghi, returned to Turkey in hopes of finding answers in a general surgeon suggested by her father.

A long road ahead

brains scan showing points of concern

In Turkey, she received her first surgery. It took an MRI, colonoscopy, and endoscopy to discover she had Wilkie’s syndrome.

But, it was unsuccessful. A combination of invasive surgery and other underlying, undiagnosed illnesses resulted in damaged nerves, cells, and organs.

An unlikely answer

Stuck in recovery without any real answers led Toprak to start researching her illness. Eventually, she found a publication authored by a German doctor named Thomas Scholbach who specializes in gastrointestinal conditions like Wilkie’s syndrome.

After reading through this 21-page document, Toprak felt as though it was speaking to her. Nearly everything she read pointed to her symptoms.

Toprak connected with Scholbach and, after some hurdles, managed to get to Germany in September 2015.

Upon her visit, Scholbach diagnosed Toprak with three compression syndromes in addition to Wilkie’s syndrome: nutcracker syndrome, Dunbar syndrome, and May-Thurner syndrome.

Since October 2015, she has had around a dozen surgeries in Germany. But, she recently had some complications and is in communication with Scholbach to help treat the problem.

Toprak’s surgery

According to Dr. Mark Taylor, central zone executive medical director of the Nova Scotia Health Authority, “the diagnosis [for Wilkie’s syndrome] is quite simple with a CT scan in most cases. Once the diagnosis is made, frequently they do need surgery, but the surgery is not a complicated operation.” (1)

But, as Toprak experienced firsthand, Wilkie’s syndrome can worsen without a proper — and fast — diagnosis.

In Germany, Scholbach gave Toprak what’s called an SMA transposition — the removal of the compressing SMA, which avoids contact and compression of the duodenum. (3)

Taylor told CBC that vascular surgeons in Nova Scotia, for example, don’t recommend it for Wilkie’s syndrome as it is a “much bigger and more dangerous operation.” (1)

Crippling financial debt

While Toprak has found answers she never thought she would find, this journey has come with a very real cost — a cost upward of half a million dollars in treatments and approximately $30,000 per German hospital stay.

And while grateful for Canada’s healthcare system, she feels bitter toward it because she feels her condition should have been spotted much earlier. It would have made a world of difference.

“You guys left me alone to die. The reason I left this country was because I was dying. How long can I go with vomiting bile and vomiting blood.” (1)

Raising awareness for other silent sufferers

Gaining some publicity, Toprak hopes her story raises awareness of Wilkie’s syndrome and for its victims.

Having documented her healthcare journey over the last few years, other people have definitely become more aware of this mystery illness.

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

Today, Toprak is on the mend. And while her road to recovery is long, her ability to be a voice for the voiceless living with Wilkie’s syndrome is filling her with hope.

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