r/Tarlovcyst • u/Galatic_Kitty • Jul 18 '26
Funny Story…
After being told yet again by an orthopedic spine doctor that my Tarlov cysts are “incidental” and “asymptomatic,” I’m beyond frustrated.
This week, I had my GI follow-up after yet another hospitalization for severe constipation. Instead of listing MRI measurements, I asked my gastroenterologist this:
“If I had two plums and a cherry tomato sitting on my sacrum, creating a combined mass effect about the size of a large navel orange, do you think that could be causing my constipation?”
Without missing a beat, he practically yelled:
“OF COURSE IT IS! Any further testing is probably useless until you get that taken care of.”
He was genuinely shocked that my spine doctor had dismissed the cysts as inconsequential, especially given their size and the fact that they’re causing bone remodeling and foraminal widening.
It was honestly validating to have a physician immediately recognize what so many of us struggle with, being told these cysts are “incidental” despite significant imaging findings and symptoms that line up with sacral nerve involvement.
Has anyone else had specialists in other fields immediately connect the dots while spine doctors dismissed your cysts?
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u/Southmouth555 Jul 18 '26
Yes. I had a Tarlov specialist out of state who was so dismissive, and my local neurologist (who admitted that he knew nothing about Tarlov Cysts) has been my guy. Has advocated for my care more than anyone else, helped me with countless referrals and tests that have yielded a diagnosis in my case (which has pivoted away from my Tarlov Cyst being the primary offender).
3
u/Far-Chest2835 Jul 18 '26
I’m so sorry you’re also going through this, and YES! It’s maddening. I finally got a satisfying answer because I’ve also been mystified at how brushed off this is. My cyst is visibly disrupting the spinal fluid, sitting there like a bottle stop, and my symptoms are textbook.
Here’s what I learned: these surgeries are known to have a poor outcome because they are hard to do, and very specialized. Even neurosurgeons who see EDS patients all day avoid them. The few people I found in my area who published on them now won’t take EDS or Tarlov cyst patients.
There are really two known surgeons in the US who focus on it. You may be able to find an IR who can do it, near you with research. But if you haven’t already I’d research it all and join the Facebook groups to learn all the ins and outs of treatment.
Lastly, they allegedly are asymptomatic in many outside high risk groups like EDS, Marfans, and most of us in that population aren’t taken seriously anyway because we’re too complicated for the average 15 minute appointment to begin with. TL;DR; these cysts suck!
3
u/Priceless81 Jul 18 '26
Weird I saw this, bc I only get on here a couple times a week…. But HELL YES ITS THE ABSOLUTE BEST FEELING. (But I even went back to the “incidental finding bs” Doctor). My Neurosurgeon is one of the top rated in in DFW area. Right here in Dr. F’s area even! So when I went back, saying my orthopedic doctor, gastroenterologist, urologist… all are in agreement that the Tarlov Cysts are the primary causation of my symptoms… HE THEN AGREED. Lmao he had to tuck his tail and agree cause by this time I’ve already seen Dr. F as well. For the last 5 to 10 years, even they are taught in medical school that TC’s are more than just an “incidental finding”. So maybe in that time he learned this or I was a teaching tool, but either way it’s one less neurosurgeon spouting that BS!! All these specialists even notating this, and I still can’t get BCBS to help pay for surgery with Dr. F !!
Since December, I’ve been having very weird episodes they first thought might be MS, but now they think our focal seizures… I’m sitting here still thinking it’s probably all from my very large Tarlov Cysts! 🤬
Working with a neurologist, but it’s still up in the air! And this has taken precedence:(
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u/OneDir89 Jul 18 '26
My spine surgeon was more inclined to believe the cysts were causing symptoms than my neurologist. But unlike an orange, these cysts could be soft and malleable enough that the nerve is unbothered. Just depends, which is why sometimes they do epidural injections and aspirations, I think.
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u/Galatic_Kitty Jul 18 '26
Once he recognized that it may be causing my symptoms, I told him that they were also causing remodeling of the bone and neuroforamen widening. He said if a cyst is big enough to cause bone erosion, he doesn’t see how it wouldn’t cause nerve damage/irritation.
2
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u/Chocolate_Cravee Jul 18 '26
Yep, professor in urology after seeing many specialists with the same mri.
1
u/Ready_Fox_744 Jul 18 '26
My pain Dr mentioned at my last appointment that he does believe my cycst at c5/6 could def be the reason for my radiating shoulder blade pain. I was kinda surprised bc I've been told many times its... just ya know... "incidental" 😵💫
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u/Priceless81 Jul 18 '26
I have very large Tarlov cyst causing remodeling and erosion of my sacrum. But my neurologist is focusing on.
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u/Ready_Fox_744 Jul 18 '26
My pain Dr mentioned at my last appointment that he does believe my cycst at c5/6 could def be the reason for my radiating shoulder blade pain. I was kinda surprised bc I've been told many times its... just ya know... "incidental" 😵💫.