'The back of my brain is sliding into my spine:' Kugluktuk woman desperate for help

A woman in Kugluktuk with a serious neurological illness has been writing to Nunavut's Office of Patient Relations for months to get help for her condition, but says nothing has been done.

Andrea Egotik, a single mother of two, has chiari malformation type 1. It's a structural abnormality where the back of the cerebellum — the part of the brain that controls balance — extends below the opening of the base of the skull where the spinal cord enters the brain. 

"The back of my brain is sliding into my spine," Egotik explained.

Egotik was diagnosed with chiari in 2016 by Dr. Robert Broad, a neurosurgeon at the University of Alberta Hospital. Since then, she's seen Broad twice, after getting referrals from locum physicians in Kugluktuk.

However, Egotik's symptoms have been getting worse and she wants to go back down south for more help. 

"[The health centre] keeps telling me over and over that they can't help me," she said. 

"I have choking and swallowing issues," said Egotik. "I have tremors on the left side of my body where I fall to the left and I have these headaches which are so bad I can't even sit up by myself." 

Chiari symptoms vary but include headaches, dizziness, trouble with swallowing and balance. 

It's unclear why Egotik hasn't been able to get a referral for a specialist, and Egotik says Dr. Broad's office needs another referral for her to see him again.

"I am on my own, completely," said Egotik.

Egotik gave CBC News permission to speak to Dr. Broad about her case, however he did not respond to a request for an interview.

No help from Office of Patient Relations

Struggles with the territorial health-care system are not a new problem for Nunavummiut, and is a topic frequently debated among Nunavut's politicians. The government of Nunavut often points people having issues to the Office of Patient Relations.

The mandate of that office, which is under the Department of Health, is to investigate complaints from patients and issue resolutions. 

Health Minister George Hickes was grilled on the purpose of the office in the legislature last year, when questioned on another patient's case.

Hickes said "the patient relations office is there to advocate," and that the office does not have the "authority to bypass policies or to change the rules on the fly" but works as a guide to help patients and their families understand the process.

I am on my own, completely. ​​​​- Andrea Egotik

Egotik says she has made four complaints to the Office of Patient Relations in seven months, but the only response she's received have been emailed statements that said, "Thank you for sharing your concerns with our office. We have shared your concerns with health officials to investigate."

"Nobody has ever looked into my health issues, if they do, I don't know how they're doing it," said Egotik. 

Parniga Akeeagok, territorial manager of patient relations, said she is unable to speak to Egotik's case because of confidentiality reasons. She said there is no timeline for when a patient should receive the results of its investigation. 

"It could be a few days, it could be a few weeks," said Akeeagok.

When asked how Nunavummiut can trust the Office of Patient Relations to investigate health complaints when they are looking into their own department, Akeeagok said: "I can't answer that question." 

When asked why she can't answer the question she said: "not sure." 

In 2018, patient relations received 350 cases, according to Akeeagok. Between January and June this year there have been 227. 

"We collaborate with people in the department to figure out solutions to get to the root of the concern," said Akeeagok. "This is why people should come to our office." 

Chief of Staff for the Nunavut health department, Francois de Wet, said he understands it can be difficult for individuals in communities to get second opinions when they feel unsatisfied with the diagnosis from their community health-care provider. 

"We don't have multiple providers in every community," said de Wet. "That could be a potential place where someone could get stuck between a rock and a hard place."

Egotik has started a GoFundMe campaign to raise $2,500 to see a neurologist on her own. As of Friday, she had raised $200.