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.

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Saturday, March 26, 2011

Diagnosed with a Tarlov, Perineural, Meningeal or Arachnoid Cyst?

Too many times Tarlov, Perineural and Menigeal Cysts are seen as an incidental finding on most MRI's or CT's. Most Radiologists and Physicians don't even bother to tell you a cyst was found believing they are mostly asymptomatic. Even if the cyst is recorded and mentioned in your MRI or CT report, which is not always the case, most Physicians assume there is no way this little cyst sitting on, in, or around your spinal cord, could be the cause of your developing, ongoing problems. Sometimes the Physician is right, but there's currently a long list of patients, including myself, who can prove that sometimes they're wrong. Sometimes that little, incidental cyst is exactly what is causing your agony. There are living examples, such as myself, who can attest to how these cysts can indeed be symptomatic and how they can detrimentally effect your life.

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....

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