Today is Wednesday, March 9th and it's the day before I get the results of nine medical assessments. Neurosurgeons, Neurologists, Orthopedic Surgeons, Rhumatoligists, Psychologists, Occupational Therapists, and on, and on, on. They've all been given the power to decide if having the spinal cord surgery I so desperately need will be easily accessible, or just another enormous, never ending battle.
Just the thought of tomorrow makes me very nervous, but I know that at the end of the day, no matter what may come out of that long list of medical assessments, it is what it is. There's nothing I can do about those results except keep trying, keep fighting and keep believing I deserve better than I've gotten so far from the Canadian Medical community. I deserve treatment.
Having a rare diagnosis brings about an extensive list of obstacles. Most of the obstacles don't even make sense and are often contradictory, but all of those obstacles include one common factor; fear. Fear of pain, fear of ongoing and developing damage as my illness is left to run amok without care. Fear of surgery, fear of not having surgery, fear of not being able to have a choice between surgery or no surgery. Fear of my future, fear, fear and more fear. I'm sure I could go on for an hour, but I won't.
How do we overcome fear? In my experience a person may not be able to overcome the original discomfort or the mental and physical impact of the initial sense of fear, but we do manage to overcome fear as long as we are determined enough to face it and march right through to the final result. I, like most others, have no choice but to face fear head on. If I didn't face it, or wasn't willing to face it then I might as well just give up, find a short pier and take a long walk. Thankfully I'm not willing to do that, so I face it and just keep on marching. Even if that march is done with a limp and slow deliberate steps.
Tonight I went to see the one and only Physician I ever met who has ever heard of, or dealt with my type of illness. He's a walk-in Physician at a local clinic and he's great. He actually takes the time to ask you questions, find out what's really going on, and figure out what he should or could actually do to help you with it.
Tonight he was seeing my son about a torn ligament from a bad slip and fall. He treated my son, then I asked him if he remembered me. He sat back and looked at me and said, "you look familiar." That's when I reminded him of who I was just by naming my diagnosis, Tarlov Cyst. He smiled and looked at me with a warm, hesitant smile and asked how I was and if I had gone for surgery yet. I told him no, but I said I was booked for surgery this June with Dr. Frank Feigenbaum. He was surprised to hear that name as he'd never heard it before. The only name he knew was Dr. Henderson in Washington. After a few short minutes of informational conversation I asked him one question just before he walked out the door. "Would you ever be willing to go on camera to say what you know of this illness and talk about the lack of treatment available in Canada?" He smiled again, and considered it for a minute then said, "sure, but I can't break patient confidentiality. But yeah, I'll do it if you need it. Things have to change here " I knew he was referring to Canada.
He had told me a long time ago that he had a patient diagnosed with the same diagnosis as me. He had done some research on the disease and then referred her to Dr. Henderson, another Neurosurgeon who specializes in Tarlov Cysts in the States. Before surgery this patient couldn't even stand up straight and was in constant, excruciating pain. After surgery she slowly got back to normal and is now back at work, living a full and productive life. Now that's a story that should be told!! The stories that prove this surgery can and does work. The stories that prove Canadians need and deserve access to this treatment.
All I can say is thank god for this Doctor and his dedication to his patients. He is one of the rare Physicians that has experienced and researched this illness hoping to help his patient find a way out of her Tarlov Cyst hell. This dedication to to this patient, with her best interest at heart, managed to find her a way out. Unfortunately, the only way out for patients in Canada is in to fight for surgery in the States seeing as Canadian specialists don't even know what to do or say about this illness, and this is what needs to change.
Some journeys are personal, some journeys aren't. This is a Canadian journey to be shared with the hope of learning, helping and educating others along the way. I'm an open book..... I hope you enjoy the read.
TARLOV CYSTS - Canada the misinformed!!!
The rare diagnosis of Tarlov Cyst Disease poses significant challenges in the realm of medical care.
Most Canadian Medical Practitioners lack the expertise to accurately diagnose, treat, or manage this condition. As a result, patients often find themselves navigating a healthcare system ill-prepared to address their needs, leaving them feeling lost, scared, and isolated. This lack of medical understanding perpetuates feelings of misinformation and uncertainty among Canadian patients.
Through this blog, I aim to share my journey of navigating the Canadian Healthcare system while living with multiple rare disease diagnoses. I have dedicated myself to learning as much as possible about my rare diseases, hoping that my experiences and hard-earned self-education can support and guide others on their own rare disease journey.
Together, let's shed light on the challenges those living with rare diseases face and work towards a more compassionate and informed healthcare system.
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Wednesday, March 9, 2011
Saturday, January 29, 2011
Multiculturalism and Medicine; Wherever the two shall meet.
In a culturally diverse society like Ontario, Canada, cultural influence is seen on every face, every corner, in every shop window and almost every conversation taking place on our Canadian streets. We, as born and bred, multi-generational Canadians are to be included in this ever expanding mosaic of Canada’s Multicultural image. Multi-generational Canadians maintain our own cultures and belief systems, which from one group to another can differ widely. No two are the same.
I was born in Corner Brook, second largest city in Newfoundland, but, even on our little Island diversity has shown its face; from Baymen to Townies, we all had our differences. We may not have always agreed with each other, yet, for the most part we learned to coexist in peace.
In my mind, and I admit I may sound a bit idealistic, Ontario and even the broader spectrum of Canada could learn a lot from our little island. Understand, accept, live and let live. We are all a small part of what is called the human race, the one and only term that unifies us all.
Unfortunately for all of us even Canadian Health Care hasn’t been spared in the battle for cultural right or wrong. From naturopathic to ancient and into traditional medicine, the influence of our separate backgrounds and beliefs are witnessed. We’ve all probably experienced it at one time or another, even if we didn’t recognize its influence.
Canadian Medical Schools address the issues facing Medical Practitioners and addressed the issue in a six part series titled, “Multiculturalism, Medicine and Health”. In Part one, the author, Dr. R Masi, stresses, “the importance of understanding community needs, cultures and beliefs; the active interest and participation of the patient in his or her own health care; the importance of a good physician-patient relationship; and the benefit of an open-minded approach by physicians and other health-care workers to the delivery of health-care services”. Can Fam Physician. 1988 October; 34: 2173–2177. My own personal experience has made me believe this topic should be part of a regular refreshing program for physicians.
In 2009 following a series of tests, one being for Cholesterol, I was told my Cholesterol levels were well above what’s considered to be a healthy range. My ex-physician, a believer of the ancient religion of Jainism, which holds that all forms of life are sacred, took a path I never would have expected in addressing this new health concern. Instead of discussing possible treatment options or management, he quickly without discussion turned to his computer, looked up a website and after writing it down on a yellow sticky note handed me the address saying, “this website will teach you how to become a vegetarian”. I have to admit, I was in shock at realizing this Physician, one I’d been seeing for almost ten years, was not concerned with respecting my cultural beliefs or practices, but, instead chose to influence my behaviors with his own beliefs. I have since changed Physicians and stress the importance of respecting my beliefs, my cultural background and me.
If Multiculturalism is ever going to work, and I know that’s a constant, ongoing debate in Canada, we have to learn to respect each other, even if we don’t agree, understand or support each other’s cultural choices. We are of one race; the human race and I strongly believe that if Canada is to succeed as a Multicultural society, it’s the acceptance of this thought, this understanding that will see Canada through to success.
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