TARLOV CYSTS - Canada the misinformed!!!
The rare diagnosis of Tarlov Cyst Disease can be a difficult illness to diagnose.
Vast majorities of Canadian Medical Practitioners are ill equipped to diagnose, treat, manage or even recognize the symptoms; let alone the causes, risks and current treatments available for treating this silent, destructive and life changing disease. This lack of medical understanding is accomplishing nothing, but keeping Canadian patients misinformed while feeling, lost, scared and alone.
This blog is being used to share my own personal experiences gained from navigating the Canadian Healthcare system while suffering from the effects of multiple Rare Disease diagnoses.
I've committed myself to the challenge of learning as much as I can about my own Rare Diseases, and I hope my experiences and hard earned self-education can help others during their own Rare Disease Journey.
Saturday, March 26, 2011
Diagnosed with a Tarlov, Perineural, Meningeal or Arachnoid Cyst?
When I was first diagnosed I was totally stunned to learn that not one Physician I knew, and I know quite a few, had ever heard of these cysts. Then when I did finally find Doctors who'd heard of these cysts very few believed they were symptomatic and responsible for my ever increasing, excruciating and debilitating chronic pain.
I ended up having to dedicate the first year after being diagnosed trying to find out as much as I could about my spinal cord, human anatomy and physiology. I had to find out what they were, what caused them and what could be done to treat them. It wasn't easy to figure out what was relevant information, what was hypothetical jargon, and what was bias based on professional arrogance. Sometimes it can be very difficult to recognize the difference, but I'm going to give you some links that just might make your journey a little easier than the one I traveled. It can also make your journey easier than most of the TC sufferers, or Tarlovians I know.
Consider this a gift, but remember there are limits to every gift. You will still have a lot of work and learning to do on your own, but these links will help make the work and the learning a little easier to achieve.
I wish you luck on your journey and wish you all the best of outcomes.
Remember. Be positive, don't give up hope and always pay it forward. Just as I help you today, perhaps the day will come where your knowledge and experience may just be what a scared, unknowing, newly diagnosed sufferer may be in desperate need of. Sharing is the key. Be proud of what you've learned, share how you learned it and direct anyone and everyone affected by this illness to the best of what and who you know.
We are never alone..... we have each other. Please help us to keep it that way....
That’s what Tarlov Cysts are usually called. Incidental Finding s; Something found that does not relate to the symptoms, which brought...
I've been writing this blog for over four years and during that time I've had an extensive list of supporters. Most are Tarlov pa...
It's been seven years since this journey began, but if there's one thing I've learned from all of this it's that it's a...