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鈥� split level home in Willowbrook.
Scarrow suffers from Eagle鈥檚 syndrome, a disorder that causes recurrent pain of the jaw, throat, and tongue.
鈥淚t feels like something is always squeezing my neck,鈥� she said.
Pain is triggered by swallowing, because the styloid process is affected. Eagle鈥檚 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鈥檚 condition has forced her to live with her elderly parents, who are now her caregivers.
鈥淗er parents are exhausted, physically, financially and emotionally,鈥� Scarrow鈥檚 friend Anna Werrun wrote on a on Scarrow鈥檚 behalf (gofundme.com/29jp9qps).
鈥淪he is currently disabled and bedridden due to her Eagle鈥檚 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,鈥� added Werrun.
The surgery will cost anywhere from $20,000 to $30,000 and she can鈥檛 get it in Canada, according to the GoFundMe page.
鈥淲e used to have five surgeons doing (the surgery) in B.C.,鈥� Scarrow said. 鈥淭hey don鈥檛 do it anymore. B.C. is the worst in Canada for medical care in so many different ways.鈥�
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.
鈥淭he screaming wakes me up from the pain,鈥� Scarrow said.
Now, she鈥檚 looking for help from the public to help improve her quality of life 鈥� maybe even save her life.
鈥淢ost suggest and ask, 鈥榃hy doesn鈥檛 the provincial medical (services plan) cover for out-of-country care?鈥欌�� Scarrow said.
鈥淚 did look into that, and it鈥檚 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.鈥�
Scarrow said U.S. doctors have already reviewed and diagnosed her, but 鈥淐anada cannot and will not accept this.鈥�
She said finding a Canadian doctor to diagnosis Eagle鈥檚 syndrome is 鈥渋mpossible, because of the lack of doctors who deal with it here and a dentist does not qualify, just MDs.鈥�
And, she said, if they don鈥檛 know about the condition, then they can鈥檛 diagnose it. Instead, it鈥檚 assumed to be something else.
鈥淪econd, even if I could obtain this, then it鈥檚 also a two-year wait for the government to approve it, according to my GP鈥檚 office,鈥� Scarrow noted.
鈥淢y condition will not last this long, my progression has been severely fast.鈥�
Started with vertigo
Scarrow鈥檚 medical issues began in February 2016, with severe vertigo, ear pain, and discomfort in the front of the neck area.
鈥淭he pain was very minor at first,鈥� Scarrow said. 鈥淚t quickly got worse and worse. The ear was just an itch at first and then it turned into an extreme earache.鈥�
The pain swiftly migrated to her teeth and jaw.
鈥淚t takes me a lot to cry with pain and I went to the ER crying of ear pain,鈥� Scarrow said. 鈥淭hey couldn鈥檛 see anything on the scan and they don鈥檛 even look for these styloid things. Since they didn鈥檛 see anything, they said get your teeth checked.鈥�
She knew she had impacted wisdom teeth. One was pulled. It didn鈥檛 alleviate the pain.
Soon after, Scarrow鈥檚 dentist identified the cause of her pain as a 鈥渟tyloid process.鈥�
A private 3D CT scan resulted in the Eagle鈥檚 syndrome diagnosis.
Today, Scarrow is bedridden. 鈥淓very single day, I try to get up and it gets harder every day. Basically, my parents are bringing me food and I can鈥檛 eat very well. I鈥檒l have a small bowl of soft stew and it鈥檒l take me five hours to eat it. Even just the action of swallowing something soft hurts.鈥�
