Kayla - Canada

My Tarlov Cysts became symptomatic after lifting a heavy patient at work. I developed a burning pain in the right side of my sacrum that got progressively more painful the more I tried to walk. I participated in physical therapy for months, diagnosed with a "sacroiliac joint" injury. At the time, I had no doubt I would recover from the lifting injury and started reading about the SI joint as much as possible. As time went on, my symptoms progressed. I developed pain in my glute and groin and was feeling many strange nerve sensations in my sacrum. Sitting began to hurt, and the pain seemed to just spread. Talking to coworkers at work who also had SI joint injuries, I realized my symptoms were different. So, I started researching other conditions: piriformis syndrome, sacroilitis, ankylosing spondylitis, and several others.

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I finally got an MRI 3 months after my symptoms started. I was convinced I must have a herniated disk or something. Nothing abnormal was mentioned on my MRI report other than a few "Perineural Cysts" in the same spot where all of my pain was coming from. At first, I felt relief, thinking, "Oh good, maybe they can just drain them." Then I started googling. I quickly learned that no, they can't just drain them, and this was very bad news. I read that they were rare to cause symptoms. I had an appointment a few days later with my family Doctor, and I said to him, "I know symptoms were rare from these things, but they were the cause of my pain." My doctor told me they were "an incidental finding" and "not the cause of my pain." I had joined a few Facebook groups where other women shared their doctors never believed them either. I also learned that here in Canada, there was no experienced Tarlov Cyst neurosurgeons. The mood in a Canadian Tarlov Cyst group was very depressing. Many women in severe pain who had been fighting for years, trying to convince their doctors the cysts were symptomatic. Other groups in other countries were much more hopeful. Women discussing their excitement about having surgery and getting their lives back.

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I tried to have a consultation with a doctor in Canada who was knowledgeable about the cysts. Unfortunately, I was not believed; I did not fit the typical profile of a symptomatic patient. Many women often become symptomatic in their mid 40s to 60s and have symptoms for many years. I was in my early 30s and only symptomatic for 4 months at that point.

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I started to become depressed. The more I read about the condition and its symptoms, the more scared I got. If I couldn't get this Canadian doctor to believe me, then no one else would.

I spent the next year progressively developing more symptoms. I was unable to sit down and spent many, many months laying in bed, crying every day. At some points, the pain was unbearable, and I could not imagine spending the rest of my life like this. I went down the same path most symptomatic women go down, consulting with many doctors and having many scans and tests. Doctors trying to search for other causes of the symptoms because they refused to believe Tarlov Cysts could cause pain. Some doctors believed me, but most remained skeptical.

Eventually, I did regain the ability to sit down somewhat comfortably. I believe laying in bed for months allowed the cysts time to become less irritated. I slowly got to a point where I could live a somewhat "normal" life with the pain, as long as I didn't lift anything heavy, fall, or walk too much.

Unfortunately, I am once again in a horrible flareup of symptoms and unable to sit. Back in the place where I started. This time, I am trying to remain hopeful the pain will calm down, but, sadly, with this disease, the pain flares eventually stop being only flareups.

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I don't think I will ever forgive Canada for how it has treated Tarlov Cyst patients. I have come to learn that many rare spine conditions that mostly only impact women are treated just as horribly in Canada. Canadian provincial healthcare plans refusing to pay for women to receive treatment abroad, arguing that treatment is within the "scope of practice" of Canadian neurosurgeons. No, many conditions are not within their scope of practice because they refuse referrals from these women and refuse to try and learn how to perform these surgeries. So, women continue to suffer or are forced to crowd fund to pay for surgical treatment abroad.

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I will end my story on a positive note: thank you to the patients before us who have fought to have this disease recognized and underwent what truly was & in some cases still is experimental treatments for their cysts. Treatments for the condition are only known because of the patients who came before us over the last 88 years. Thank you to the researchers and doctors who have taken an interest in treating the disease & choose to believe their patients. Hopefully with time this condition will stop being ignored by the medical community and it will be recognized for the truly debilitating condition that it is.

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