Navigating Canadian health care and chronic pain
Health care in Canada is deteriorating, and the cause of this is political. The public’s need for reduced taxes---which is where funding for social programs comes from---and the politician’s need to get elected, means hospitals and their staff do without necessary resources. The result: doctors and nurses are overworked; patients, who found it hard enough at the best of times to get the attention they needed, are left facing an insurmountable headwind of tired, cynical health workers, and a heightened level of stress.
My mother was a nurse. Were it not for her inside knowledge, I might not have had the care I enjoyed through a series of seven major surgeries starting at age nine. She told me back in the early 80s, “You have to fight and scrape for everything you get in health care.” It was true then, and it’s even truer today. When you fall ill, getting answers is a little like stepping into a Robin Cook novel. Many of you have your own medical mystery. I hope that relating this story will assist others in getting the attention they need.
This recent problem reared its ugly head in 1994, and ramped up to an unidentified chronic pain condition that left me barely able to walk, and experiencing regular debilitating pain reminiscent of viral meningitis---extreme headaches, stiff neck, nausea, vomiting, inability to sit or lay down because approaching horizontal exacerbated the pain twofold.
I’d had viral meningitis in 1992, and in the mid 80s was diagnosed with pseudotumor cerebri---a build-up of spinal fluid that went undiagnosed for a year and a half and caused extreme head and back aches. The diagnosis for that came when inter cranial swelling caused the optic nerve to swell and blood vessels in the eye to burst.
In 2007, after a more insidious three day bout with pain and no sleep, I went to emergency in the small town of Tofino, where I was living. The doctor dismissed me entirely, told me the dizziness and numbness were due to panic and shallow breathing (I was panicking about the pain). Subsequent research into this doctor indicated he had a very hard time relating to male patients: everyone I spoke to had similar experiences, although women and children liked him. His advice to me was ‘tough it out”. Men have been hearing this phrase their whole life, and it can be a damaging thing to hear.
After this debacle I was able to find a relatively capable, caring GP who explored my past conditions, ordered a CAT scan, a nuclear scan, and referred me to a muscular-skeletal pain specialist. The tests were negative. The specialist was depressingly inept. Mainly, he sat with a closed folder on his lap, shaking his head. He put his hands on two or three times, but had zero input, and recommended no alternative approaches. Although several doctors prescribed many pain killers and meds, nothing lessened the pain an iota, including alternative therapies, heat, ice, yoga ,or anything else.
Despite having no answers, most doctors will not tolerate patients doing their own investigation. It’s understandable that MDs who hear countless self-diagnoses would begin to roll their eyes, but a patient isn’t left with much else. In fact, it was constant pursuance and elimination of possible causes that led to a diagnosis and treatments that allow some relief and management.
It quickly became obvious that to get proper care, a move from Vancouver Island to Vancouver was necessary. If nothing else, better access to alternative treatments might help. Finding a GP was difficult, and walk-in clinics are suspect of anyone claiming to have pain---they assume you’re looking for Oxycontin. Clinics won’t entertain patients like that, and are happy prescribing salves and Viagra all day long. Bedside manner in these clinics is almost nonexistent.
After dozens of phone calls a GP was secured, only because the staff at this particular clinic was sympathetic. Failures at walk-in clinics emphasized the need for an advocate---an obviously honest person exuding integrity to speak on the patient’s behalf---to explain to the doctor that the condition is real, not imagined. This step was crucial to being taken seriously, and I recommend it to anyone who hasn’t tried it.