My spine is riddled with issues. Issues which will only get worse over time. Issues caused by the lovely disorder that has taken over my life (EDS). Scoliosis? Check. Bulging discs? Check. Spinal stenosis? Check. Backwards neck? Check. Hemangioma? Check. Sacroiliac joint dysfunction? Check. But today we’re going to talk about one problem in particular: Tarlov Cysts.
Back in 2016, I started having pain in my back, down my buttock and into my leg. Initially, it was written off as sciatica — an easy diagnosis that means “our work here is done, go away.” There’s no cure and treatment is drugs, sometimes physical therapy. During that process, though, I got x-rays and an MRI and the doctor told me all was well. Take some ibuprofen and take it easy. This was back when I took the word of medical professionals to heart and actually believed them, so I did as I was told.
This is the story that changed my perception of medical professionals completely.
I was seeing a chiropractor at the time who offered to give the images a second look. “Sometimes I see something they didn’t,” he said. So I thought sure, why not and signed a release form for him to get the reports and imaging. He told me it would take a while, so I came back a few days later and am waiting in the adjustment room, when he walks in and tells me, “We haven’t gotten the images yet, but we got the report. I don’t know why they told you they didn’t find anything. It clearly says here that they found Tarlov Cysts.” My mind started racing. The word ‘cyst’ usually means something scary and I’m panicking at the idea of having multiple in my spine. So, I just stared at him blankly, blinking my wide eyes.
My chiropractor proceeded to give me a vague description of what Tarlov Cysts are and tells me how they could be responsible for my pain. I went home, did research, and found out so much more. Down the list of symptoms, I was just ticking them off. I grew more and more angry that no one had told me about theses cysts and it motivated me to delve deeper. That’s when I discovered that doctors had been lying and hiding things from me for years. I had a whole list of issues they’d been keeping from me, handing out meds instead of answers. I was furious.
That’s when I became an advocate for my own health.
Anyway, back to the story. So, I found Dr. Rudolph Schrot out of Sacramento, who is one of very few specialists in the U.S. that treats Tarlov Cysts, and made an appointment. Since then, he’s been my guy. He diagnosed me with Tarlov Cysts disease in 2017 and showed me the infamous MRI. There they were, clear as day, a stack of what looked like eggs in my sacrum. Each measures about 1.5cm and we can see at least three of them. We have done new MRIs regularly since then to watch the progression of the cysts and, at this point, he is very eager to operate on them. Here’s why:
In 2020, I started having terrible pelvic pain. I got lots of testing done, saw multiple doctors, really got sent through the wringer, but came up empty handed for the most part. But I was having nerve problems and was really scared. Jolting pain in my thigh, stabbing in my groin, tingling in my belly button, and numbness in my vaginal area… Yeah, I was concerned. Dr. Schrot was, too. These new problems, added with the existing pain and bowel issues, meant things were getting worse, according to him. The cysts had gotten slightly larger and they were likely putting pressure on nerves, causing chaos. He scheduled me for urgent surgery.
This procedure isn’t easy. It’s dangerous, only done by the best of the best. They cut out a piece of your bone, drain the cysts, take fat from elsewhere in your body and use it to reinforce the area around the nerve so that hopefully they don’t feel back up, then put everything back together and sew you up. *Cringe* And there’s no guarantee that it would even fix anything.
Symptoms caused by TCs are kind of a guessing game; You don’t know if the cysts are actually causing the problems until you’ve removed them from the equation. It could be something else causing the issues. So, I could get the surgery and still be in pain afterward. That would suck. Especially given the fact that getting operations with EDS is risky. Often, people like me have bad reactions to anesthesia, poor healing, longer recoveries, and every surgery means damaging more tissues — which in the long run means more problems. We tend to avoid surgery whenever we can because of this. With no guarantee and no clear answers to what was happening, I decided against the procedure.
It’s been nearly a year since the intense pelvic pain started and I’ve yet to get a definitive diagnosis. It’s been 5 years since the initial diagnosis of Tarlov Cyst Disease. It’s been far too long of living with these beasts. Yet, here I am, still suffering — but that’s not the take away here. The point of this post is to bring attention to two points:
1. Be your own advocate! Get copies of your reports, ask to see your own imaging, and make sure that you are knowledgeable about what is going on.
2. Listen to your body. It will tell you when something is wrong and you need to trust that feeling. If I had given up, I might have never known about this disorder!
If you want to know more about TCs, here’s what I can tell you from experience: They are growths along the spinal nerve root and are usually asymptomatic (which means they are benign and cause no symptoms) However, in cases like mine, they cause pain in the thighs, low back, pelvic region, and buttock. They put pressure on nerves which cause issues with the bowel, bladder, and sexual organs. This means that you could have random diarrhea, sudden changes in how often you relieve your bladder, and pain or numbness during sex. Sounds fun, right? Yeah… Right. You can get them in other areas of your spine, as well, but it’s very uncommon. I also had them in my thoracic spine as well, however they have dissipated. They can refill from time to time like little angry assholes and cause pain in my upper back, as well. There’s nothing I can do about those ones.
For now, I am choosing not to get the procedure to alleviate these cysts. It is still high on my list of considerations, but right now I have so many things going on that this isn’t the first I would like to take care of. In the future, if I decide to have this operation, I will definitely keep you all updated. Until then, I’m signing off! Be well and stay strong!
If you have any questions, please leave them in the comments or go to NORD to learn more š
Far From Perfect 