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.
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