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international research and continue to make their decisions based on old, outdated information.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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Some journeys are personal, some journeys aren't. This is a Canadian journey to be shared with the hope of learning, helping and educating others along the way. I'm an open book..... I hope you enjoy the read.
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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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
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