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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Friday, October 14, 2011

You're Invited!! Webinar Series: Chronic Pain, the Journey Forward

WEBINAR SERIES: Chronic Pain, 
the Journey Forward

Dear Friends and Colleagues,
                                               
We are pleased to invite you and your constituents for an fascinating exciting and dynamic webinar presentation on, “Utilizing Science, Technology and
the Arts to Transform Pain”.
  This webinar is part of our educational series, Chronic Pain, the Journey Forward”.
Co-hosted by the Canadian Institute for the Relief of Pain and Disability (CIRPD) and PainBC, this free webinar series provides an opportunity for for people living with pain, as well as their families and healthcare providers to learn from top researchers and practitioners how to live well with chronic pain. 

We appreciate any assistance you can provide us by promoting this series with your constituents/staff/members/peers through:
·         An email blast
·         Posting the information on your website or in an e-newsletter (see also attached PDF flyer)
·         Tweeting this information
·         Posting the attached PDF flyer on a public bulletin board/staffroom etc.

If you are able, we would ask you to circulate the brief message below to get the word out about the October 19th webinar.  We are also attaching a PDF with a fuller description of the webinar that you can pass along.

Join us on October 19th at 2:00 pm (PDT) for the third presentation of our
online education series, “Chronic Pain, the Journey Forward

TOPIC:               Utilizing Science, Technology and the Arts to Transform Pain with        Prof. Diane Gromala
This webinar, co-sponsored by CIRPD and Pain BC, will provide an overview of the exciting potential of new technologies and interactive design in helping to improve the lives of people who live with long-term chronic pain.
This webinar will offer some fascinating insights into:
    • immersive VR research: promising early results,
    • studies in the use of robotics to alleviate anxiety,
    • new developments in using social media to combat social isolation,
    • the importance of conducting research studies and participating in them.

DATE:             Wednesday, October 19th, 2011 - 2:00 PM (PDT)  

We look forward to meeting you online!
LEARN MORE about CIRPD and this webinar series 


Canadian Institute for the Relief of Pain and Disability, 204 – 916 West Broadway Avenue, Vancouver, BC V5Z 1K7 Canada
Tel: 604 684-4148, North American 800-872-3105   Fax: 604 684-6247

Thursday, October 13, 2011

Surgical Management of Symptomatic Sacral Tarlov Cysts





Surgical Management of Symptomatic Sacral Tarlov Surgical Management of Symptomatic Tarlov Cysts
(click above for link)




Every new study, research paper or medical article means something to someone diagnosed with Symptomatic Tarlov Cysts. For that reason I do my best to add as much information 
as I can to this blog.

Thanks for the info Sharon. 

All contributions are always appreciated and welcome.

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