I just finished my sixth annual friends group cycling trip. Together, we’ve admired the vibrant fall colors in Vermont, the stunning Rockies in Colorado, the beautiful shorelines of Prince Edward Island in Canada, the small towns surrounding Chesapeake Bay and the San Juan Islands in the Pacific Northwest.
Twenty years ago, I never could have imagined doing these trips. In fact, shortly after my Tarlov cyst diagnosis, I gave my bike away because nothing was more painful to me than riding.
In 2005, I started experiencing intermittent episodes of very sharp back pain and was told I had sciatica. I tried many suggested treatments, but nothing worked. At the same time, I was also experiencing urinary urgency, which I thought was unrelated.
During this time, I worked full-time as a college instructor and in my free time loved to hike, bike and attend regular yoga and aerobics classes. Within the year, I had to give up most of those activities. The pain continued to increase and started shooting down my legs. I had to stop midway on the drive to work and walk around for several minutes to relieve the discomfort of sitting during my long commute.
Getting a Diagnosis
Then in 2006, I saw an osteopathic doctor, who ordered an MRI. On the large lit screen in his office, he showed me my MRI, drawing his finger down the image, he said, “Look at your spinal cord, those bulges should not be there, those are Tarlov cysts.”
He went on to explain that they were rare, and that even though the radiologist report said this was “an incidental finding” the location of the cysts correlated with the pain I was feeling in my back and legs. He then said there was nothing he could do to help me, and I would need to find a doctor who could.
While relieved to have a diagnosis, I still did not have a solution. At that time, there were only two or three obscure articles on the internet, no organizations, no doctors listed who treated the disease, and no Tarlov Cyst Disease Foundation. I found a Yahoo chat group of Tarlov patients trying to share what they knew and met Reta Heirs who was working to form a foundation for patient support and research.
In my doctor search, I also went to a urologist. At the time, MRI results were not digital so I carried the giant posterboard-sized films with me to appointments. In looking at the image, the urologist pointed to my cysts and said, “I don’t know what that is, but it’s sitting right on the nerve to your bladder. You have to get that out of there, or you’ll lose that nerve function and that one doesn’t come back.”
Luckily, in my doctor search, I also found a general practitioner who was willing to research Tarlov cysts and support my ever-increasing pain management needs.
I loved teaching, and wanted to keep working, and needed to ask for accommodations. First, I asked for a standing desk so I could sit or stand as needed. The following year, I asked for a couch so I could lay down between classes with an ice pack.
As the pain increased, I was also losing feeling in my legs, developed “drop foot,” and had to walk with a cane. It was an emotionally difficult day when I had to admit I could not walk from my car to my office carrying all my class materials and had to apply for a disability sticker.
Surgery and Recovery
In 2009, when I was considering going on full-time disability, I found out through the Tarlov Cyst Disease Foundation, that Dr. Feigenbaum had begun offering surgery for Tarlov Cyst patients in Kansas City. So, four years after the onset of my symptoms I was finally able to get treatment for my three large cysts.
It was a long recovery, but several months post-surgery my pain was gone. Yet to finally get the feeling back in my legs, it still took three years of water-based exercises and physical therapy and then Pilates. The relief of getting out of debilitating pain and regaining mobility cannot be overstated, even though I need to continue to manage the permanent nerve damage to my bladder and bowels.
I was able to return to teaching and eventually to activities I could have never imagined during the years I was in pain. Even simple things like sitting on a hard chair or standing for long periods felt like a victory at first. In addition to cycling, I am also now back to hiking and generally living an active life.
In reflecting on my Tarlov journey, I am so grateful that I had medical insurance, an employer who approved needed accommodations, and a supportive husband and friends. I am heartbreakingly aware this is not the case for many suffering from this disease.
Iris’s Advice
Based on my experience, my biggest piece of advice to people who suspect they may have Tarlov cyst disease is to find doctors who are willing to learn about Tarlov cysts and actually look at your MRI, not just read the radiologist report.
Also, long-term pain management is a difficult personal journey, what works for other patients may not work for you. Finally, facing hard days, it was so important to me to focus on what I can do, versus what I could no longer do.
While I’m glad that there’s so much more information available and doctors that recognize Tarlov cysts can be symptomatic, getting diagnosis and treatment for this disease continues to still be a long, hard journey for many. The relaunch of the Tarlov Cyst Disease Foundation gives me hope that improved communications, treatment, and research for both patients and the medical community will be possible.