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.

Canadian Pain Management Series of Recent News Articles

CANADIAN PAIN COALITION

For every patient with Chronic Pain, to hear the story of another person feeling similar pains and facing similar barriers is never a good thing. But sometimes it can be a great thing!


I received an email from the Canadian Pain Coalition (CPC) informing members that there is a recent Pain Management Series of news articles written in publications across Canada.


Below are all of the links to the published stories for anyone interested in knowing more about what Canadians are facing, and what's being said and done to improve current pain management options for Canadians.



'The worst part is you can't see pain'; Former administrative assistant can no longer work now that her entire body has been affected






Who will stop the pain? Canada's invisible epidemic of suffering / Treating the invisible affliction; Inside the world of unrelenting, incapacitating and life-altering pain.




Dr. Roland Wong Information and Tarlov Cyst Survey Link

Dr. Roland Wong - Tarlov Cyst Research (Click Here For Link)

A few days ago I wrote about Dr. Roland Wong, and the hearing he’s facing with the College of Physicians and Surgeons of Ontario. 

Some people, including me, wanted to know more about his connection to Tarlov Cysts and what he was actually hoping to accomplish. Those answers can now be answered by visiting the above link.

The link  will bring you to a page on the Tarlov Cyst Association website where you will find a full explanation of the survey.

Dr. Wong had completed a 2003 Survey and the answers it provides can be found by clinking on the 2003 Survey Results link on that page. There you will find out what he'd hoped to achieve, the results of the 2003 survey, and how the survey is being continued with the hope of gathering more information from a broader range of test subjects. He is now seeking information from both Tarlov patients and non-patient subjects.

The original 2003 Survey was only completed by two European patients,which proves to me and I'm sure many of you that this survey has not reached a wide enough audience.To gather more accurate data Dr. Wong has expanded the survey and now I ask on behalf of Tarlov Cyst patients everywhere, please spread the news of this survey and support Dr. Wong in his attempt to gather more accurate information, which would create more accurate results.

Please visit the site, complete the new survey and pass the link and survey information on to all Tarlov patients you know. By helping Dr. Wong collect this information, you are helping deliver a more accurate picture of Tarlov Cyst patient barriers, experiences and the attention required to address this Disease.


As I stated before, the more information that's gathered on Tarlov Cysts and patient experiences, the more attention this will bring to the suffering experienced by Tarlov patients, and families from around the world.


We all have a story.... please share yours.


Thanks,
Sherri

Wednesday, October 5, 2011

Why Don't Physicians Care Enough? If they do this is what happens!! Tarlov Patients, you'll know this name...



The College of Physicians and Surgeons of Ontario


Discipline Hearings or Matters to be Spoken
RE: Dr. Roland Wong

__________________________
Effective October 4, 2011

Doctor Dr. Rowland Wong


Date October 3rd, 2011 - Motion


October 17-21 2011 - Hearing

Summary of Allegations
*Failed to maintain the standard of practice of 
*Engaged in an act or omission relevant to the
  practice of medicine that, having regard to all the circumstances,   

  would reasonably be Hearing    
  considered by members as disgraceful, dishonorable, or  
  unprofessional.
*Incompetence






Hearings begin on Ford complaint against anti-poverty doctor
Toronto Mayor Rob Ford thinks doctors and others in the “medical field” should not be advocates for the poor, even though the social determinants of health are a key factor in an individual’s wellness.

On Monday Ford’s complaint against such a doctor went forward at the College of Physicians and Surgeons of Ontario (CPSO).
Ford complained to the professional college about Dr. Roland Wong, who by his own admission helped people on social assistance fill out more than 15,000 forms to access the now cancelled special diet program.
In a memo sent out to activists, Health4All states “we cannot accept the bullying of doctors who advocate for the poor. We need to let the CPSO know that poor people, and their allies, including those in health care, will not stay home when one of our community members comes under attack.”
According to the Canadian Medical Association Journal (CMAJ), Wong insists he never acted improperly or illegally in assisting social assistant recipients with the forms. In addition to signing the special diet forms for his own patients, Wong also assisted others attending special clinics organized by poverty advocates.
The special diet provided additional social assistance benefits of up to $250 per month to allow individuals to buy healthy food because of their medical condition. The Liberals cancelled the benefit after costs increased from $6 million in 2001/02 to $220 million in 2009/10, a move doctors have called short-sighted.
This is not the first time Ford has tried to silence critics by suggesting they have no right to speak out on important issues. Ford supporters questioned Margaret Atwood’s right to speak out about proposed cuts to the city’s libraries. Councillor Doug Ford, the Mayor’s brother, suggested to the Toronto Star that she should get elected or pipe down.
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