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


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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Neurosurgery:
March 2001 - Volume 48 - Issue 3 - pp 636-646
Experimental Studies
A Spinal Thecal Sac Constriction Model Supports the Theory That Induced Pressure Gradients in the Cord Cause Edema and Cyst Formation
Josephson, Anna M.D.; Greitz, Dan M.D., Ph.D.; Klason, Tomas Ph.D.; Olson, Lars Ph.D.; Spenger, Christian M.D.
Description: Collapse Box
Abstract
OBJECTIVE: Spinal cord cysts are a devastating condition that occur secondary to obstructions of the spinal canal, which may be caused by congenital malformations, trauma, spinal canal stenosis, tumors, meningitis, or arachnoiditis. A hypothesis that could explain how spinal cord cysts form in these situations has been presented recently. Therefore, a novel spinal thecal sac constriction model was implemented to test various aspects of this hypothesis.
METHODS: Thecal sac constriction was achieved by subjecting rats to an extradural silk ligature at the T8 spinal cord level. Rats with complete spinal cord transection served as a second model for comparison. The animals underwent high-resolution magnetic resonance imaging and histological analysis.
RESULTS: Thecal sac constriction caused edema cranial and caudal to the ligation within 3 weeks, and cysts developed after 8 to 13 weeks. In contrast, cysts in rats with spinal cord transection were located predominantly in the cranial spinal cord. Histological sections of spinal cords confirmed the magnetic resonance imaging results.
CONCLUSION: Magnetic resonance imaging provided the specific advantage of enabling characterization of events as they occurred repeatedly over time in the spinal cords of individual living animals. The spinal thecal sac constriction model proved useful for investigation of features of the cerebrospinal fluid pulse pressure theory. Edema and cyst distributions were in accordance with this theory. We conclude that induced intramedullary pressure gradients originating from the cerebrospinal fluid pulse pressure may underlie cyst formation in the vicinity of spinal canal obstructions and that cysts are preceded by edema.

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