‘A wild ride’: Manitoba woman seeks surgery after years with multiple rare vascular syndromes

Nicole Friesen appears with her feeding tube that provides life-saving nourishment. (Image courtesy of Friesen)

For most people, eating is regular part of everyday life. But for 28-year-old Nicole Friesen, it’s something her body can no longer do.

Friesen struggled with a lot of gastrointestinal issues growing up. She tried cutting out things like gluten and lactose, anything to try and figure what would be triggering her symptoms – but her situation only worsened as she got older.

“I started getting violently ill after eating meals,” she said.

“It got to a point where I couldn’t eat more than three bites of food, and I would feel very full and nauseous. I would have severe pain for hours, so I would be curled up in the fetal position with a heating pad in bed. And I was stuck that way every time I tried to consume something.”

Her health took a drastic turn about three years ago. Eating became impossible, and she began losing significant weight.

After seeing multiple vascular surgeons and consulting with other doctors, initial testing revealed she had a very rare condition called Superior Mesenteric Artery Syndrome or SMAS.

This condition is when the third portion of the duodenum, the first and shortest part of the small intestine, is pinched by the superior mesenteric artery and aorta. This issue makes it difficult for food and liquids to pass through.

For over a year, Friesen said she was surviving off of just three-to-four spoonfuls of peanut butter and frosting for caloric intake as she couldn’t consume anything substantial.

She was under 90 pounds before she was able to get a feeding tube.

“I am reliant on a feeding tube and a PICC line for nutrition and hydration because of that,” she said. “When I finally got my feeding tube, it was a huge relief.”

Friesen was able to regain the weight she lost, but this still didn’t answer the question of why she lost the ability to digest food.

“Doctors were very perplexed at as to why I was not able to eat and testing was inconclusive,” she said.

Seeking answers outside Canada

Since she was unable to get answers in Manitoba, Friesen said she and her husband travelled to Spain in June of this year to see a surgeon who specializes in vascular compression syndromes.

After further testing, Friesen said she was officially diagnosed with not just SMAS, but Median Arcuate Ligament Syndrome (MALS), Nutcracker Syndrome (NCS) and May Thurner Syndrome (MTS).

Friesen said it was a relief to figure out the cause of her issues but now needs to get them treated.

SMAS surgery unavailable in Canada

Friesen is scheduled to get an Alvear method surgery – a specific procedure to fix the compressed area in her small intestine.

But this method is not available in Canada. She will be travelling to Virginia in January for the surgery.

“It has been such a huge hope to people living with SMAS to be able to regain the ability to eat,” she said. “There are a couple of surgeons down in the States that have learned this method.”

“It would be so amazing if a surgeon would step forward here in Canada to learn this method,” she said.

Extremely rare conditions

Dr. Charles Bernstein said he’s never heard of a patient with all four of Friesen’s conditions.

“To have two or more of these conditions would be extremely rare, and to have all four would be very, very rare,” said Bernstein, who is a distinguished professor of internal medicine in the Max Rady College of Medicine at the university.

“Personally, I’ve managed patients with MALS and SMAS, but I’ve never seen a patient with May Thurner Syndrome.”

Berstein said it’s common for someone with a collective of rare conditions to feel that there is a lack of care that’s available.

“I wouldn’t be surprised if expert vascular surgeons, whether it’s in Winnipeg, Toronto or in another major centre, would have not seen a patient with a collection of all four of these conditions,” he said.

“It’s not uncommon to have to go to a centre of excellence. One often has to go to a major centre, and often times they are in the U.S., sometimes in Europe, that have seen patients with the kinds of rare conditions she is talking about.”

“I would encourage patients who are like this to get care from the most expert centres they can find, which have expertise in their specific condition,” he said.

As for Friesen, she is being forced to pay for the surgery, travel, stay and other medical expenses when she goes to Virginia in January. The overall trip is expected to cost around $60,000.

But she says no matter the cost, she is praying for one outcome.

“We’re very hopeful this surgery will allow me to regain the ability to eat.”