Symptomatic Perineural Cysts: Dismissed, Ignored, and Misdiagnosed - 85 Patient Poll

Patients with symptomatic Tarlov cysts/perineural cysts face substantial challenges when seeking care and navigating the medical system. They frequently encounter skepticism, dismissal, and a lack of understanding from medical professionals about this overlooked and debilitating spine condition. Many patients are left advocating for themselves, struggling to get their voices heard and their symptoms recognized.

A huge thank you to the patients who participated in the poll and shared your medical experiences. Thank you also to the medical professionals, family members, and friends who continue to educate themselves about Symptomatic Tarlov Cysts and offer unwavering support to TC patients. Your advocacy and willingness to learn make a real difference.

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Data was collected from a 15-question survey for patients with Symptomatic Tarlov Cysts (STC). The survey included multiple-choice, checkbox, and open-ended questions. Most questions included an 'Other' option to allow for additional, nuanced responses. *
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Chapters
00:00 Introductions
00:40 Misleading MRI Terminology
01:03 Dismissive Remarks from Doctors
01:36 Symptoms Not Taken Seriously
01:55 Forced to Self-Advocate
02:09 Impact on Seeking Medical Care
02:25 Misdiagnosed Physical Conditions
02:50 Misdiagnosed Psychological Disorders
03:06 Unnecessary Surgeries
03:29 Frustrations with Medical Interactions
04:03 Patient Voices
05:12 Advice for Tarlov Cyst Patients


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