Purpose

I have started this blog for several reasons. My goals are to share my story publicly to spread awareness for this rare disease, to educate those unfamiliar about Tarlov Cyst Disease, and to encourage my fellow “cysters” by letting them know they are not alone. I have seen God work in many ways through this journey and hope that, without cramming it down people’s throats, I can inspire others through my testimony.

I want to share my journey honestly, without sugar coating it. This disease is a roller coaster ride of ups and downs but we can work some humor into this craziness too and think positively!! I believe a positive attitude affects healing and recovery.

I have OCDly researched the heck out of this disease, spending hours upon hours and days upon days of searching and studying. I’ve read professional medical journal articles, case studies, spoken to the CEO and President of the National Tarlov Cyst Disease Foundation numerous times, spoken at length with other patients (pre-op and post-op) and have made life-long friends with many others who share this disease. I’ve learned more about sacral anatomy, nerve roots, nerve compression and radiology than I ever would have cared to know. I would like to share everything I have learned with others. If you have this rare disease, you have to research for yourself. You are your own advocate.

*DISCLAIMER* - I am not a medical professional nor an expert in Tarlov Cysts. Please use my interpretation of information and opinions with discernment. Even over time since I originally posted things, I have learned more that has changed my perception of information. So, I ask that you please not take my word for anything and do your own fact-based research as well from credible sources. I believe we all should do this with any information we see or read on the internet. Also, keep in mind that Case Studies are NOT research.