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, November 17, 2010

2010 – The year of hell!!


For some reason this morning I don’t have any to the internet connection on the front step. Not sure why seeing as I’ve had it tons of times before, but this morning it seems to be overly stubborn. Just like everything else in my life. Well maybe that’s a good thing considering it’s making me write instead of browsing aimlessly at things I really don’t care about anyway.

What an exhausting year 2010 has been. This entire year has been one long string of crisis after crisis after crisis. I’ve been going through hell more than I could have ever expected, and I think it’s still far from over. But seeing as I always try to look on the bright side here’s a sample of the good. As long as there is strife and that strife is accompanied by determination then there are also possible solutions. This year I’ve found many goods in the bads’ and I’m so grateful for that ability. 

Let’s see if I can remember all the bad and then pull out the good.
In January, which seems not so long ago, I was involved in an MVA. I walked away seemingly unscathed, but when the pain hit a few days later, it hit hard. A rotator cuff injury got me started in Physio and as the treatments progressed everyone around me could see I was getting worse instead of better. The only thing that helped was massages. Oh…. How I miss those massages! Acupuncture…. No thanks. Not ever again! But massages? Anytime …….. See? There’s one lesson learned!

My right arm was always hurting and repeatedly felt like someone was trying to tear it out of its socket; I always awoke in the middle of the night with headaches that made me pace the room crying while wishing I could just rip my head off and die. It got to a point where I would walk into my bedroom, look at my bed and pillow suspiciously and beg “Please be kind to me tonight?” Bedtime became a time of terror and it had more to do with reality than dreams. Too this day I can’t sleep whole night without sleep medications. I ran out of meds once and tried to make it through the night without it; no such luck. Again my bed became a weapon of torture and the next morning I was back to step one of the beginning. I’ve tried to stay well stocked ever since. Another lesson learned…

Finally someone had the thought to request that the Insurance pay for MRI’s of the effected areas. Three weeks later I was in having an MRI. (Shocking considering it can take months to get an appointment through OHIP.) I must say I was surprised I got in so fast, but I was grateful. The shoulder MRI came back fine, the head MRI came back fine, but the cervical spine MRI wasn’t as lucky. They found a bulging disk and two Tarlov (Perineural) Cysts. And here’s where the learning really began!

First I had to ask myself, “What is a Tarlov, Perineural Cyst?” And then I wondered, “Could this be affecting me? Is this why I’m in so much pain?”

In 2006 I had gone back to school as a Mature Student to study Broadcast Journalism. I worked my ass off, lived and breathed the program and finally graduated two years later with High Honors and a 3.8 GPA. I’ve never been able to do much with the things I’ve learned, but there is one tool I gained that I make use of every single day; Research.

My Research Instructor may have been an ass, on the personality side, but he certainly knew his stuff, and knew even better how to pound Research into our heads. Back then I was merely tolerant of his rampages and insults, today I’m grateful for his never ending demands and the lessons he’d taught me. Today the tools he gave me are the ones I use the most.

When I finally got the results of the MRI, which I managed to get my hands on before I even got into see my Physician about them, I read and then researched. I signed onto to become a member of Straight Talk Tarlov Cysts; a user friendly, Yahoo chat site, where basically all they discussed were Tarlov Cysts. They talked about their symptoms; They chatted about the experiences they were living through and the effects the illness was having on their families and home lives. They talked about the impact these Cysts were having on their ability to earn and be self sufficient and they also talked about what helped, and what didn’t. 

This is where I began asking questions and began getting experienced answers. It was a great beginning. But oh so far from the end!
                

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