Sarah Stewart - US

I want to share my experience with Tarlov cysts because I think there’s a lot of misunderstanding about how symptomatic they can be. I fell in 2004 and badly injured my tailbone. In 2009, I was told that when I broke it, it had “healed over with a cyst.” I had back pain for years, but things got significantly worse in 2019. I developed severe nerve pain down my glute and thigh, intense pressure in my sacrum, and eventually urinary retention. A nurse practitioner at my primary care office noticed a Tarlov cyst mentioned in my hospital records and suggested it might actually be causing my symptoms. An MRI showed a cyst on my left S2 nerve measuring about 4 by 3 centimeters. I consulted with a highly regarded local neurosurgery group. I was told Tarlov cysts aren’t symptomatic, and that my problems were from degenerative disc disease and spondylolisthesis. The doctor literally called it a “bum back.” When I asked what I was supposed to do about not being able to urinate, he told me, “Some people need to learn to self-catheterize.” That’s a direct quote. I eventually consulted with Dr. Feigenbaum and scheduled surgery for July 2020. The cyst was massive. It had eroded through my sacrum and was compressing all of my sacral nerve roots. My operative report described the sacrum as “eggshell thin, translucent, and weeping spinal fluid.” By the time I had surgery, I was barely able to walk. My left leg felt completely disconnected from my brain. I could move it while sitting or lying down, but when I tried to take a step, it would just give out. I was averaging around 500 steps a day. The difference after surgery was immediate. I woke up with the pressure and pain gone, and I could walk again without my leg giving out. I’m incredibly grateful to Dr. Feigenbaum and his team at Medical City Dallas. I had 12 weeks of recovery, started with slow walks in the park, worked my way up to long hikes with my dog, and eventually completed a 100-mile running challenge that year. For context, I was the kid in gym class who walked the mile in 17 minutes. So that was a pretty significant turnaround. Now, six years later, I have additional Tarlov cysts showing up on my MRIs. I don’t know if they’ll ever become symptomatic or whether they’re contributing to my chronic pain. It’s honestly a bit of a gamble. But I would have the surgery again in a heartbeat. It gave me my life back.

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That's why im joining the "Beyond Incidental" campaign, to give those with meningeal cyst disorder a voice.

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