Heather C

My name is Heather. I’m a 40-year-old mom and author from the Midwest. My health has
always been a battleground for me, and with the help of my medical team, we’ve slowly started
putting puzzle pieces together (Hypermobility Spectrum Disorder, IIH, POTS, among other
things). Last year, I developed pain in my pelvic area and my tailbone (the tailbone pain being
the worst). My neurologist ordered spinal MRIs, and the findings noted things like arthritis, some
bulging discs higher up, but nothing else “of note.”
My neuro referred me to interventional pain management, who did steroid injections in my SI
joints to help with hip pain. It helped very temporarily. I did physical therapy. The pain only got
worse. It was then I examined my reports further. One of my MRIs noted a small Tarlov cyst at
s2/s3, but labeled it as an incidental finding. I was told they weren’t the cause of my pain.
I dug in and researched Tarlov cysts myself. What I found was eye-opening. Asymptomatic
cysts are believed to be so prevalent that doctors ALWAYS assume a cyst is asymptomatic
(unless it’s enormous). Mine wasn’t, but my symptoms aligned with Tarlov cyst pain. I could
barely sit without pain (and getting up was excruciating). Stairs are hard because of the strain it
puts on the nerve with lifting my leg.
Interventional pain management half-believed me, and ordered an epidural caudal steroid
injection to calm inflammation, but it only triggered a different issue that left me nearly unable to
walk and hospitalized off and on for months.
To this day, there is such a lack of knowledge among neurologists/neurosurgeons in my area
that I am left to suffer. Traveling is expensive and the logistics are difficult (I have a disabled
child to care for). My pain waxes and wanes, but it dictates my functioning. We are moving into
a more wheelchair-friendly home soon.
If more doctors (and radiologists) were up to date on the latest research and treatment for
Tarlov cysts, people like me could potentially access life-changing care. Tarlov cysts are more
than just “incidental.” For many, they are devastating.

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