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Title: Discovery to Recovery: The Role of Private Facebook Groups in Supporting Teens, Tweens, Tykes, and Tots (D2R) Diagnosed With Tarlov Cysts
Co-Authors: NA
Background: Tarlov, or perineural cysts (TC), are dilations of the nerve root caused by the proliferation of spinal fluid through a breach in the arachnoid — the middle of three layers of membranes known as the meninges, which protect the brain and spinal cord. First identified by Dr. Isadore Tarlov during cadaver studies in the 1930s, Tarlov cysts are most commonly found on the nerve roots in the sacrum at the bottom of the spinal column. However, they can develop on nerve roots anywhere along the spine. Their etiology is presently unknown. Congenital causes are often correlated with birth defects such as connective tissues disorders like Marfans or Ehlers-Danlos syndromes, spina bifida, and tethered cord syndrome, while acquired causes are often correlated with physical injury such as a bad fall, automobile crashes or even the vaginal delivery of a child (non-C-section). Furthermore, TC can be asymptomatic or symptomatic and are more prevalent in females. Some medical journal articles state that asymptomatic TC cysts are present in up to 13% of the general population (check source) with a small percentage of these cysts becoming symptomatic at some point. Symptomatic sacral cysts commonly cause radiculopathy in the legs, bladder or bowel dysfunction, or sexual dysfunction depending on which nerve root is affected. Many TC symptoms mimic other common ailments, which can lead to years of misdiagnoses.
Discovery to Recovery: Supporting Teens, Tweens, Tykes, and Tots (D2R) Diagnosed With Tarlov Cysts Through Private Facebook Groups (such asTarlov Cyster Moms, Tarlov Cyst Support for Cysters and Mysters, Tarlov Cyst Society of America, Tarlov Cyst International Research and Support), help members more efficiently and effectively navigate the complexities associated with (seeking/identifying treatment for) Tarlov Cyst Disease (TCD), an often under- or misdiagnosed medical condition of the spine. Through extensive posts, members of Facebook support groups generate a wealth of invaluable information on topics imperative to diagnosing and treating TCD. This includes specific doctors who recognize the condition; the pros and cons of particular treatment options including surgical procedures, outpatient and alternative treatments, physical therapy, and pain management; differential diagnosis; and insurance complexities. Just as important, the invaluable information provided through support groups empowers members — largely female — to advocate for themselves or their loved one who suffers from TCD within the vast network of westernized medicine, which is dominated by male doctors (neurosurgeons, neurologists, radiologists, interventional radiologists, urologists, pain management physicians, etc). And most importantly, these support groups provide visibility and hope — hope for a resolution to their children’s suffering from this chronic disease. Many members have seen specialist after specialist seeking relief. Many have been told the pain is “in their head.” Others have been told that the cysts are inoperable and they should learn to cope with the resulting chronic pain. Still others have been accused of doctor shopping or even Munchausen by proxy in the process of seeking medical help for a child. Through content analysis of posts, themes such as symptom/s, age at symptom onset, probable cause of symptom onset, time from symptom onset to treatment diagnosis, test/diagnostics, differential diagnosis, age at treatment, surgeons, treatment results are identified, detailed case studies are developed and compiled for future distribution to healthcare professionals as part of a comprehensive Tarlov Cyst public information campaign.
Methods: Content analysis and case studies
Results (or results in progress): The development of a Tarlov Cyst Disease (TCD) public information campaign used to educate healthcare professionals about the effects of this condition on younger patients
Conclusion (or feedback you seek from audience) How to best measure the effectiveness of the public information campaign in building awareness among healthcare professionals of this disease and its effects on a younger population of patients.