A Veteran’s Fight Against Sacral Meningeal Disease

Hunter Buchanan-Bailey - Pennsylvania, US

In 2024, my life changed in ways I never could have imagined. I was involved in a motorcycle accident after being struck by a car. At first, my primary symptom was severe tailbone pain. I had no idea that this would become the beginning of a long, exhausting journey filled with uncertainty, worsening neurological symptoms, and a constant struggle to have my concerns taken seriously.

For nearly a year, I searched for answers. I saw numerous medical professionals, underwent testing, and repeatedly explained the pain I was experiencing. Unfortunately, the answers were often the same. I was offered narcotic pain medications and injections rather than a clear explanation of what was causing my symptoms. I declined the narcotics, and the injections I did receive only made my pain worse.

In mid-2025, I underwent an MRI. I was told that everything looked fine, but when I reviewed the radiology report myself, something caught my attention: an S2–S4 sacral Tarlov cyst.

Naturally, I began asking questions. Could this be causing my pain? Could it explain what I had been experiencing for so long?

The response was almost always the same: “It’s an incidental finding. It’s not causing your symptoms.”

I heard those words over and over again.

Despite my worsening condition, I felt as though my concerns were being dismissed. I began questioning myself, wondering how something could cause so much pain and yet seemingly have no explanation.

Eventually, I started researching Tarlov cysts on my own. That search led me to the Facebook support group Tarlov Cysters and Mysters, and I can confidently say that finding that community changed my life.

For the first time, I found people describing symptoms remarkably similar to my own. People who had experienced the same uncertainty, the same dismissals, and the same struggle to find medical professionals who understood their condition.

Through that community, I found Dr. Welch, a specialist who reviewed my imaging and identified what had previously been labeled a Tarlov cyst as a large sacral meningocele measuring approximately 6.5 cm by 1.4 cm, extending from S2 through S4. He explained that this abnormality could absolutely account for my symptoms and raised concerns about a possible underlying cerebrospinal fluid (CSF) leak.

For the first time, I felt heard.

Unfortunately, by that point, my symptoms had already begun progressing.

What started as excruciating pain while sitting gradually became difficulty walking, weakness in my legs, and episodes of dizziness and severe headaches. Eventually, I experienced an episode where I collapsed, lost consciousness, and developed temporary numbness and abnormal sensations in my legs.

I went to the emergency room hoping someone would finally recognize the seriousness of what was happening.

Instead, I heard those same words again.

“It’s incidental.”

It is difficult to describe what that does to a person mentally. To experience debilitating pain, to feel your body progressively losing abilities you once took for granted, and to repeatedly be told that the one abnormality identified on your imaging is unrelated to your suffering is incredibly discouraging.

As time went on, my condition continued to deteriorate. My headaches became more frequent, my legs grew weaker, and my pain became increasingly unpredictable. I began experiencing significant difficulty walking, episodes of fainting, muscle spasms, urinary symptoms, and eventually numbness in the saddle region.

But the physical suffering was only part of the story.

I lost my job. I lost my home. I nearly lost my truck. I lost the independence I had worked so hard to build.

As a United States Air Force veteran, I had always taken pride in my ability to work hard, remain independent, and push through difficult circumstances. I had served my country, built a career, and was working toward a future I was proud of. Suddenly, I found myself having to start over, relying on family and struggling to accomplish things that had once been effortless.

At an age when most people are building their careers, enjoying their independence, and planning their futures, I was trying to figure out how to get through an ordinary day.

The things people often take for granted became challenges. Walking through a fair, going shopping, sitting through an event, or simply spending time outside the house required planning around my symptoms. I couldn’t stand or walk for extended periods without weakness and pain, but sitting down to rest often caused equally unbearable discomfort.

There was no comfortable position. Sometimes, there was no relief.

I have missed out on experiences, opportunities, and moments of my life that I will never get back.

Today, my symptoms have progressed to the point where severe pain, episodes of syncope, neurological weakness, and saddle-region numbness have become frighteningly unpredictable. I am now preparing to undergo major surgery involving S1–S4 laminectomies and closure of my sacral meningocele.

I am hopeful that surgery will help me regain some of what I have lost, but I also understand that the road to recovery may be long and that some neurological damage may not be reversible.

That is why I want to become an advocate.

I am not sharing my story for sympathy. I am sharing it because I know there are other people living through the same uncertainty, pain, and frustration that I experienced.

I want to help raise awareness that Tarlov cysts and other sacral meningeal abnormalities are not always incidental findings. While some may cause no symptoms, others can be associated with debilitating pain and serious neurological complications. Patients deserve to have their symptoms evaluated thoroughly rather than dismissed solely because of the name of a finding on an MRI report.

I want more medical professionals to recognize when further investigation is warranted and when a referral to a knowledgeable specialist could make a life-changing difference.

I want patients to feel comfortable asking questions, reading their own medical records, seeking second opinions, and advocating for themselves when something does not feel right.

Most importantly, I want people who are suffering to know that they are not alone.

Had I never read my own MRI report, continued searching for answers, or found the Tarlov Cysters and Mysters community, I do not know where I would be today.

My experience has taught me that an incidental finding on a radiology report should never automatically mean a patient’s suffering is incidental, too.

No patient should have to lose their livelihood, their independence, or years of their life simply trying to be heard.

If sharing my experience helps even one person find the right specialist, receive an earlier diagnosis, or avoid the struggles I have endured, then telling my story will have been worth it.

Because behind every MRI finding is a real person, and behind every dismissed symptom is a life that may be changing forever.

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