When the window blinds were opened, ever so slightly, Kendra Scarrow winced at the slivers of sunlight that shone on her face.
The 39-year-old is a prisoner of her pain; her jail cell is a bed in the ground floor of her parents’ split level home in Willowbrook.
Scarrow suffers from Eagle’s syndrome, a disorder that causes recurrent pain of the jaw, throat, and tongue.
“It feels like something is always squeezing my neck,” she said.
Pain is triggered by swallowing, because the styloid process is affected. Eagle’s syndrome occurs when the styloid (a pointed piece of bone that extends down from the skull, just below the ear) grows longer than it should, resulting in severe and virtually constant pain.
Scarrow’s condition has forced her to live with her elderly parents, who are now her caregivers.
“Her parents are exhausted, physically, financially and emotionally,” Scarrow’s friend Anna Werrun wrote on a GoFundMe page on Scarrow’s behalf (gofundme.com/29jp9qps).
“She is currently disabled and bedridden due to her Eagle’s syndrome. She also has brainstem and spinal compression that also needs to be taken care of. She desperately needs help to get a life-saving surgery,” added Werrun.
The surgery will cost anywhere from $20,000 to $30,000 and she can’t get it in Canada, according to the GoFundMe page.
“We used to have five surgeons doing (the surgery) in B.C.,” Scarrow said. “They don’t do it anymore. B.C. is the worst in Canada for medical care in so many different ways.”
Meanwhile, her condition is worsening. Scarrow eats little and spends much of her time in bed in her darkened room. She says she has screamed in her sleep from pain that clings to her face like a parasite.
“The screaming wakes me up from the pain,” Scarrow said.
Now, she’s looking for help from the public to help improve her quality of life — maybe even save her life.
“Most suggest and ask, ‘Why doesn’t the provincial medical (services plan) cover for out-of-country care?’” Scarrow said.
“I did look into that, and it’s a big complication and lengthy process. First, they have to diagnose with a specialist medical doctor to sign the forms. It has to be a diagnosis from Canada, not a U.S. doctor.”
Scarrow said U.S. doctors have already reviewed and diagnosed her, but “Canada cannot and will not accept this.”
She said finding a Canadian doctor to diagnosis Eagle’s syndrome is “impossible, because of the lack of doctors who deal with it here and a dentist does not qualify, just MDs.”
And, she said, if they don’t know about the condition, then they can’t diagnose it. Instead, it’s assumed to be something else.
“Second, even if I could obtain this, then it’s also a two-year wait for the government to approve it, according to my GP’s office,” Scarrow noted.
“My condition will not last this long, my progression has been severely fast.”
Started with vertigo
Scarrow’s medical issues began in February 2016, with severe vertigo, ear pain, and discomfort in the front of the neck area.
“The pain was very minor at first,” Scarrow said. “It quickly got worse and worse. The ear was just an itch at first and then it turned into an extreme earache.”
The pain swiftly migrated to her teeth and jaw.
“It takes me a lot to cry with pain and I went to the ER crying of ear pain,” Scarrow said. “They couldn’t see anything on the scan and they don’t even look for these styloid things. Since they didn’t see anything, they said get your teeth checked.”
She knew she had impacted wisdom teeth. One was pulled. It didn’t alleviate the pain.
Soon after, Scarrow’s dentist identified the cause of her pain as a “styloid process.”
A private 3D CT scan resulted in the Eagle’s syndrome diagnosis.
Today, Scarrow is bedridden. “Every single day, I try to get up and it gets harder every day. Basically, my parents are bringing me food and I can’t eat very well. I’ll have a small bowl of soft stew and it’ll take me five hours to eat it. Even just the action of swallowing something soft hurts.”