The Journey of a Tarlov Cyst Patient: My Story

Living with Tarlov cysts has been a journey with many challenges and unexpected turns. After over fourteen years of living with Tarlov Cyst Disease, I’ve come to understand the toll it can take on both the body and spirit. Today, I’d like to share my story, which I hope will offer insight and encouragement for others walking a similar path.

My journey began in 2010, following a motor vehicle accident. I experienced intense pain and pressure in my lower back and legs, but it took countless doctor visits and tests before I finally received a diagnosis. Knowing I had Tarlov Cyst Disease was a relief—finally, there was a name for my condition—but it also brought fear and uncertainty about my future.

In July 2011, I underwent surgery to treat what my doctors referred to as a Giant Intradural Meningeal cyst in my sacrum. The cyst had eroded 11 holes in my sacral bone, which had formed around the cyst, suggesting it had been present since I was young. This cyst caused so much pain that I could barely sit, stand, or walk, let alone drive or work. Thankfully, the surgery not only treated the sacral cyst but that one surgery also caused two symptomatic cervical perineural cysts to deflate, bringing significant relief. For the first time in nearly two years, I felt hope.

However, seven years after the surgery, I began feeling familiar pain in my buttocks and shooting down my legs. A new sacral MRI revealed three small perineural cysts had formed where the giant cyst had once been. Although I don’t regret having the surgery, I now understand that surgery isn’t a cure—it’s a treatment option that can offer relief but doesn’t guarantee lasting results.

When people ask me today about surgery, I respond honestly: I’m incredibly grateful for the relief it brought into my life, but it’s clear that we need more research to develop better ways to treat and manage symptomatic Tarlov cysts.

One of the most important lessons I’ve learned is the power of self-advocacy. As a Tarlov Cyst patient, it’s crucial to educate yourself about the condition and take an active role in your care. Ask questions, seek second opinions, and participate in your treatment plan. At times, you may even need to teach your healthcare providers about Tarlov Cyst Disease. Don’t be afraid to speak up; your health is worth it.

Finding Support and Building A Community

Along the way, I discovered the value of support networks. Initially, I connected with others on Yahoo groups, where I found people who truly understood what I was going through. Eventually, I founded The Tarlov Cyst Society to provide a dedicated space for those seeking support within Canada. From the beginning, this community has been invaluable, offering comfort, guidance, and a shared sense of purpose. If you haven’t already, I encourage you to join a support group. Having people who understand your journey can make all the difference.

Living with Tarlov Cyst Disease means finding ways to manage chronic pain. Work closely with your healthcare team to develop a plan that meets your individual needs, which might include medications, physical therapy, or alternative therapies like acupuncture or meditation. Some patients, like me, choose surgery; others live with the pain or are unable to afford the costs of surgery. Unfortunately, even today, there are still very few surgeons experienced in treating Tarlov Cysts, leaving many patients without access to informed care.

It can be discouraging, but try not to give up if it takes time to find the right treatments for you. This journey isn’t easy, but it’s worth pursuing every option to improve your quality of life.

In addition to physical pain, living with Tarlov Cysts can take a toll on our emotional health. It’s common to feel isolated, especially when many medical practitioners are unfamiliar with the condition. This isolation can impact both personal and professional aspects of life, affecting one’s overall well-being. If you’re struggling, consider prioritizing your mental health by seeking therapy or counseling. These resources provide a safe space to process emotions, develop coping strategies, and learn techniques for managing stress.

For many Tarlov Cyst patients, Tarlov Cyst Disease doesn’t exist in isolation. I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) four years after surgery, which helps explain why my recovery took longer than expected. It’s also likely why new cysts formed after my initial surgery. Many Tarlov Cyst patients have associated conditions, such as connective tissue disorders, cerebrospinal fluid (CSF) leaks, Intracranial Hypertension, Persistent Genital Arousal Disorder (PGAD)**, and Adhesive Arachnoiditis(AA). These comorbidities can complicate treatment and increase symptom severity, underscoring the need for specialized, comprehensive care.

While there is currently no cure for Tarlov Cyst Disease, advancements in research are being made, and treatments continue to evolve. Our understanding of this condition is expanding, but there is still much to be learned. This is why the Tarlov Cyst Society is dedicated to providing the latest updates and advocating for continued research. We remain hopeful that with time, more effective treatments will become available.

If you’re interested in learning more or connecting with others who understand, I encourage you to visit the Tarlov Cyst Society’s website. Our patient Group offers a place to share your experiences and find the support you need. Remember, you are not alone in this journey.

Living with Tarlov Cyst Disease may be challenging, but together, we can create a brighter future for all those affected. This is just one story of one Journey of a Tarlov Cyst Patient; there are thousands more whose stories are very much the same. Thank you for being a part of my journey.

Written by Sherri Jones

A woman sitting on a hospital bed staring out the window