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As a Tarlov Cyst patient living in Canada, I’ve been
forced to search for any and all research papers that confirm the theory of “Trauma
Related Spinal Cord Cyst Formation”.
Through my research I have found multiple research studies
that contradict Neurosurgeon claims that Tarlov Cysts are NOT caused by
trauma. Many Neurosurgeons, Orthopedic Surgeons and Neurologists and Physicians even attempt to claim that Tarlov Cysts do not cause pain!
At present, there are 17 cases of Workers Safety and
Insurance Board (WSIB) claims in Canada where patients claimed that their
symptomatic cyst pain, the same pain that can be extremely debilitating and
even paralysing, began following a work related trauma. Those same patients
who filed these WSIB Claims on the Symptomatic Tarlov Cyst basis have all
lost their cases and are now left to suffer alone in the Province of Ontario
thanks to what appears to be a lack of interest on behalf of the
Neurosurgical community within Ontario and across Canada.
If a person was to search the CanLii Database with the search
term “Tarlov Cyst” there would be a large collection of cases where patients
claimed their pain began and continued to develop following some form of trauma.
Alongside that list of claimants you will also find a short list of surgeons
who deny these claims.
If you take the time to review the transcripts you will
see that in some cases the medical expert is not even asked to provide any specific,
scientific explanation of how they can be so certain that the trauma in
question did not cause the cyst; or at least make the cyst symptomatic. In
many cases the same Neurosurgeon is called to testify, repeatedly providing
the same statement over and over.
Unfortunately, Ontario Neurosurgical communities have not
done their own research on Tarlov Cyst formation, management or treatment,
but at the same time Canadian testimony dooms many patient claimants to a
life of debilitating pain where they are left to suffer a life without care
or even the financial means to seek out and receive treatment elsewhere.
On an international level there are now what can be
referred to as “Experts’ in the diagnosis, management and treatment of Tarlov
Cysts. Unfortunately for Canadian Tarlov Cyst patients, the few Canadian
surgeons called to testify in Tarlov Cyst cases publicly disregard current
international research and continue to make their decisions based on old, outdated information.
If at the end of the day, if legal decisions are to be made
on the balance of probabilities, then it would be fair to say that all
previously denied claims were made based on old research that can easily be
contradicted through the presentation of current research by proven, and
medically substantiated international experts.
To date only one case, an OHIP Appeal case for Out of
Country Care, Docket #10-HIA-0071 has accepted the “expert”
testimony of an American Neurosurgeon known to specialize in the treatment of
Symptomatic Tarlov Cysts.
With this precedence in place and publicly accessible, all Canadian Patients now have a reference
point to present in their argument of Tarlov Cyst Disability. This Tarlov Cyst Expert also believes that many cysts form or are made symptomatic through trauma related injury.
Below is one example,, but only a portion, of one of the many new and more current research
studies supporting the belief that spinal cord trauma could be one of the
causes of symptomatic spinal cord cyst development. This is only one report
out of hundreds that can now support patients in their legal liability
claims.
I will be adding other studies in the near future.
I hope this helps Canadian Tarlov Cyst Patients advocate
for themselves. Seeing as in most cases, old, dis-proven research has developed the need for patient self-advocacy. It seems to be the only resource we have.
If you’ve found other studies to support the Canadian Tarlov Cause I would love to
add them to the growing list I will be adding to the blog soon.
Thank you and good luck in your Tarlov Care Journey!
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Monday, November 28, 2011
A Spinal Thecal Sac Constriction Model Supports the Theory That Induced Pressure Gradients in the Cord Cause Edema and Cyst Formation
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 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”
online education series, “Chronic Pain, the Journey Forward”
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!
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
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)
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
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.
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
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