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New on the Tarlov Cyst Society Website: Tarlov Cyst Disease Supports
- Jun 18
- 2 min read
Living with Tarlov Cyst Disease (TCD) can feel isolating, especially when you're dismissed by doctors or told your symptoms are unrelated. But you are not alone—and you don’t have to navigate this journey without help.
That’s why we’re proud to introduce the “Get Support” section on the Tarlov Cyst Society website—a centralized hub of information, resources, and tools designed to empower you with knowledge and guidance.
Why Tarlov Cyst Disease Patient Support Is So Important
When your condition is rare and misunderstood, understanding it yourself becomes critical.
Too many TCD patients are misdiagnosed, sent home without answers, or told their cysts are “incidental findings.” In reality, symptomatic Tarlov cysts can cause life-altering pain, neurological dysfunction, and loss of bladder or bowel control.
Through the Get Support section, we provide patient-friendly, research-backed tools so you can:
Recognize misinformation
Ask better questions
Prepare for medical appointments
Challenge dismissive attitudes
Advocate for proper care
What You’ll Find in the Get Support Section
🧠 Our Blog: Your Ongoing Learning Resource
We’ve built an ever-growing collection of blog posts that translate complex medical research into clear, accessible language. You'll find:
Explanations of symptoms and diagnosis
Updates on new research
Practical tips for daily living
Patient stories and advocacy guidance
📘 Free Patient Handbook
Our downloadable Tarlov Cyst Disease Patient Handbook (PDF) offers a simple but essential overview of:
What TCD is
Common symptoms
Diagnostic steps
Where to find help
Whether you’re newly diagnosed or still searching for answers, this guide is a great starting point.
📌 Tarlov Cyst Disease Diagnostic Poster
One of the most powerful tools we offer is our Diagnostic Poster, designed to help educate doctors and support patient advocacy. It’s based on peer-reviewed research—including Dr. Kieran Murphy’s 1000-patient referral study.
It includes:
Clear diagnostic pathways
Symptom patterns and neurological indicators
Imaging and confirmatory testing protocols
📎 Print it. Bring it to appointments. Share it with your care team.
🩺 Find a Doctor Directory
We’ve compiled a list of doctors around the world who have been identified by patients as having some experience or willingness to discuss Tarlov Cyst Disease.This list doesn’t guarantee care, but it’s a starting point—and a step forward in a landscape that can feel full of dead ends.
❓ Frequently Asked Questions (FAQ)
Have questions? You're not alone. Our FAQ page answers the most common concerns patients have—based on scientific literature and lived experience. We cover:
Diagnosing TCD
Symptom explanations
Surgery and treatment options
Insurance and imaging challenges
You Deserve Better—and We're Here to Help
The goal of the Tarlov Cyst Society has always been to educate, advocate, and empower. This new Get Support section puts that mission into action. Whether you’re searching for a diagnosis, preparing for surgery, or simply trying to live better with chronic symptoms, we want you to have access to the tools you need to be heard.
If you have questions, need guidance, or know of a doctor who should be added to our provider list, please reach out:📧 info@tarlovcystsociety.com
Together, we can change the story for Tarlov Cyst patients everywhere.
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