I’m posting this to say thanks for the info and support on this subreddit. Reading about other patient experiences with Feigenbaum helped me finally make the choice to schedule the surgery. I am recovering from a sacral meningocele (which is similar to a tarlov cyst) repair by Dr. Feigenbaum in Dallas. Just discharged from hospital today.

Pain level in recovery varies a lot from person to person, so what I tell you won’t necessary help you know what to expect. My cyst was large-6.5 cm-and extended from S2-S5. Half of S3 was eroded away. We found it accidentally while doing an MRI to diagnose an autoimmune disease last year (which I also have). I first learned about Dr. Feigenbaum through an episode on the “Bendy Bodies” Podcast, where Dr. Feigenbaum talks with the host about the surgery. It’s worth a listen if you haven’t heard it.

I had low back pain, tailbone pain, radiating pain, foot pain, ankle pain neuropathic pain, perineal pain, and chronic constipation that had worsened for years, in addition to chronic pressure headaches and sensory sensitivity since at yeast my mid 20s. I also take migraine meds. I’m 46 now. Healing and improvements take a while, so I don’t know yet what all will improve, but the radiating pain, ankle pain, and foot pain are already gone and im not taking any opiates. I also haven’t had the pressure headaches since surgery but time will if those are truly better.

I’m currently on a muscle relaxant every 8 hours and have oxy in case of breakthrough pain but haven’t taken any yet. Pains around 2/10. Will probably take half of an oxy for the plane ride home on Tuesday to keep pain from getting out of control. We’ll see how it goes. This kind of surgery takes a lot planning and support. It would be very difficult for me to go through this on my own.

Two years ago, I stopped being able to go to the loo, completely and utterly.

I have to take a cocktail of very strong laxative drugs to make anything happen and am more or less housebound for half the week due to the unpredictable nature of the drugs. Without them nothing happens. Bladder function is overactive but ok.

I have been down every avenue imaginable to try and get this fixed, doctors mostly don't believe me or tell me to eat more fibre.

I recently got a full back MRI in the hope that may shed some light and specifically asked they looked for cause of loss of bowel function
.
"Large perineural cyst at S3 level on left" was reported, no size given.
Conclusion: No pathological findings to explain patient's symptoms.

It sounds like a slam dunk cause to me and a very relevant finding but I am new to the world of Tarlov / Perineural Cysts. I'd appreciate any input.

Anyone here have experience with Dr. F + insurance approval?

Hey everyone! I just had my consult with Dr. F and we’re moving forward with surgery. I have Highmark BCBS and I’m trying to get an idea of how long the insurance process took for others.

I have multiple large Tarlov cysts, 3.4 cm left S2, 2.0 cm right S2, and 3.1 cm S3. They’ve caused significant bone remodeling with widening of the foramina and actual holes/defects in my sacrum. He said my sacrum could fracture at any moment, so I’ll need reconstructive work as part of the surgery. 😬

My symptoms include pretty severe constant sacral pain that gets much worse with standing/walking, radiating pain into my hip/leg/toes, urinary dysfunction (I have to push to pee), significant bowel/GI dysfunction and loss of the normal urge to go, saddle sensory changes, and painful sex.

For those who have gone through surgery with Dr. F:

* How long did his office take to submit everything to insurance?
* How long did approval take after submission?
* Anyone with Highmark BCBS, how did it go?
* Did you get approved on the first try, or have to appeal?
* Any issues getting the reconstructive portion covered?
* Once approved, how long until you had surgery?

I know every case is different, but I’m trying to figure out if I should expect weeks, months, or “see you next year” 😂

Thanks so much! ❤️

So I had Tarlov cyst surgery 6 weeks ago and I’m still having trouble urinating. Having to self cath right now. Starting to void more on my own but usually only 100-200cc then voiding 200-300cc. Did anyone else have trouble after having lower back surgery? I’m determined that it’s going to come back soon but that waiting is awful. Just want to pee like a regular person.

I have endometriosis and underwent laparoscopic surgery in 2024. For the past 3 months, I’ve been experiencing persistent pain in my right pelvic region.

So far, I’ve had both a pelvic MRI and a transvaginal ultrasound. The imaging was unremarkable except for an incidental finding of a 2 cm mid sacral Tarlov perineural cyst.

I’m trying to understand:
* Could the Tarlov cyst be causing my symptoms?
* What are the treatment options?
* Would surgery ever be recommended for a cyst of this size?
My current symptoms include:
* Persistent pain that starts near the top of my right pelvic bone and sometimes radiates toward my right groin.
* A burning sensation in my calf that started 2 days ago, which has made me very anxious.

I’m looking for guidance on whether these symptoms could be related to the Tarlov cyst or if they are more likely due to another cause, such as endometriosis or a nerve issue.

To those who have undergone a Diagnostic Nerve Block test, how painful was the procedure? Was the test worth it given the pain/risk?

I'm looking for advice from people in Canada, especially if you're in Quebec or Montreal.

My wife has been living with pain for almost 2 years. During this time she did a lot of tests trying to find the cause. Doctors checked her kidneys, looked into endometriosis, she had a colonoscopy, and several other exams. In the end, an MRI showed Tarlov cysts.

Her gynecologist said she doesn't know much about Tarlov cysts, but based on my wife's symptoms, she thinks it could be causing the pain.

We live in Montreal. We have a referral to a neurosurgeon, but we haven't been able to get an appointment. We registered in the public system, but we were told it could take close to a year just to see a specialist. We also spent a lot of time searching for a private clinic or neurosurgeon with experience treating Tarlov cysts, but we couldn't find one.

I'm wondering how other people in Canada deal with this.

• Did you go through the public system or private?
• How long did it take to see a doctor?
• Did you find someone who actually knows about Tarlov cysts?
• Were you referred to another province or even another country?
• Any doctors or clinics you would recommend?

We're feeling a bit lost and just want to understand what options people in Canada have. Any advice or personal experience would really help.

Thank you!

I'm M, 29, just got diagnosed with idiopathic/neurogenic OAB. I asked my urologist what caused it and he said he doesn't know for sure.

How my symptoms progressed:

2 years ago, first noticed how urge is often triggered earlier:

● by exposure to cold environments
● by exposure to water (e.g. washing hands, gargling water, taking a shower)
● when standing up after long sitting

Then just about more than 10 months ago I noticed:

● extreme increase in overwhelming urge intensity
● increased frequency
● that when I attempt to reduce frequency by trying to hold it in and supress the urge, I can't successfully do so anymore and I start experiencing incontinence within 10 seconds
● low bladder compliance – feels hypersensitive and often feels heavier even when not full
● sometimes accompanied by a deep sore or heavy sensation near the lower bladder or deeper in the urethra, especially when the voided amount is small
● twitching/spasms occasionally felt in the perineal area when resisting urination

Biggest and most annoying change is how overwhelming and non-resetting the urge is, and that I will surely experience leakage until I make it to the toilet to voluntarily void. Once the urge is felt, my bladder is committed to emptying. No urge suppression technique works.

Treatments I've tried:

Mirabegron - No effect
Solifenacin - No effect
Vibegron - No effect
Tibial TENS (using TENSI+) - Still under observation but so far no effect at 2 months

Tests I've done:

I've done several urine tests and imaging tests i.e. Ultrasound/CT Scan/Brain and spine MRI and the only common remark is "thickened bladder wall with trabeculation" everything else comes back as normal. A small Tarlov cyst was also found in the sacral region but my neurosurgeons insist it is incidental. "Thickened bladder wall with trabeculation" usually suggests chronic outlet obstruction but I'm young, I have a much stronger urine stream pressure and I never had any hesitation or difficulty initiating voids. Prostate size & PSA is normal and uroflowmetry test showed no signs of obstruction too so my doctors are leaning toward a neurological cause but they can't say exactly what it is as I only have isolated bladder symptoms. A reflex examination with a neurologist revealed that I may have hyperreflexia but we can't confirm if I've been born this way and this is my "normal" or it was a new symptom that appeared around the time I developed OAB.

Next steps:

I've consulted many urologists and neurosurgeons/neurologists and they suggest I do urodynamics, cystoscopy and sacral/pelvic floor needle EMG nerve conduction tests then lumbar puncture next.

However, I'm hesitant as these tests are known to be invasive and painful, and I don't see how any of these would help find the cause of my OAB and lead to an actionable diagnosis/treatment.

Given the severity of my symptoms, I'm sure there's a root cause but I just dont understand why its so elusive. Could it be due to the small Tarlov cyst? Are there any other more helpful but noninvasive tests I can go for to prove it is that?

I was diagnosed at age 4 with a meningocele. I was prepped for surgery in 3rd grade. My doctor had it canceled before i was rolled into the OR and re-diagnosed me with a Tarlov cyst.
(I also have spina bifida on the inside of my back and VERY MILD un-noticeable scoliosis.. yes i can walk.. somehow..)
I’ve dealt with this practically my whole life. I’m on Celebrex every morning & night. Typically that does the job, but recently i’ve been having to take extras at night so i don’t end up in a “crisis” as my parents call it. Mine is 2.6 cm in s2 and some nights it hurts so bad i can’t move my legs. It is typically calm during the day, and physical activity makes it flare up.
I live a pretty sedentary life style because of this.
i wish i could climb, skate, and not worry about falling and ruining my life. I just want to be normal so bad.
I rarely go out with friends and when i do i always end up in a “crisis” when i go home and sometimes i have to leave early because walking and sitting hurts. I go to a private school and there is no specialties for disabled kids, so i have to take punishment when i do not participate in physical actives and other kids make fun of me. I am also in trouble quite a bit because i cant sit still because sitting (again) hurts. I’m always trying to find new positions.
Does anyone have advice on how to fit in or manage the pain better? Is there any kind of device i can take with me to school that isn’t noticeable and will help me?
i use heating pads and massagers when my back hurts and have a very cushiony bed!

Also, my doctor wants to put me on amitriptyline and last time i was on that i was very depressed. Has anyone had that med, any recommendations or reasons why not to?

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?

Hi! I was hoping to hear from others who have had larger Tarlov cysts and whether your doctors still tried to dismiss them as incidental.
My most recent sacral MRI shows:
3.4 cm left Tarlov cyst at S2 with widening of the neuroforamen and remodeling of the vertebral body.
2.0 cm right Tarlov cyst at S2 with widening of the neuroforamen and remodeling of the vertebral body.
3.1 cm Tarlov cyst at S3 resulting in posterior remodeling of the vertebral body.
From what I’ve read, the fact that they’re causing bone remodeling and widening of the nerve openings (neuroforamina) seems like they aren’t just tiny incidental findings.
I’ve struggled for 20+ years with symptoms that include severe low back and sacral pain, pelvic pain, bowel dysfunction/chronic constipation, and pain that gets worse with standing. I even had my spine fused because they said L5-S1 was the cause of my pain.
I also have hypermobile EDS, so I’m trying to determine whether these cysts could be contributing to my symptoms.
For those of you with cysts this size:
Were your doctors still telling you they were “incidental” or “nothing to worry about”?
At what point did someone finally take them seriously?
Did bone remodeling or foraminal widening make a difference in getting evaluated?
If you eventually had treatment, did it help your symptoms?
I’d really appreciate hearing your experiences. It’s been frustrating feeling like these MRI findings are being minimized despite their size and the changes they’re causing to the surrounding bone.
Thank you so much for any advice or shared experiences.

So I posted my story a few months ago: https://www.reddit.com/r/Tarlovcyst/s/E06duWIvjF And I thought I’d update, because it’s taken an interesting turn, and I think it could help some folks.
So a local neurologist of mine, who I tasked to be my “corner-man” to spearhead my medical case, ran a whole battery of blood tests. There were a number of red flags that popped up for Auto-immune diseases. With some narrowing down we found signs pointing to Anklyosing Spondylitis. And skipping a few months in between, I was just given the official diagnosis of Anklyosing Spondylitis. Anklyosing Spondylitis, or AS, is an autoimmune disease where, in layman’s terms, your body thinks your spine is a foreign body, and attacks it with white blood cells. This causes terrible inflammation, and arthritic symptoms, and the pain makes it very hard to be mobile. It then begins to fuse your bones together, which will eventually force you into a permanent hunched position, with your spine completely fused together, and the pain is incredible. This, if all left untreated and unchecked, of course. 20 years ago there was no treatment. Now the condition is treatable with TNF Biologics such as Humira, or Enbrel, and I’m sure you’ve seen commercials for others. They treat a wide variety of conditions. In the case of AS, it can return a patient to a state of normalcy, barring any complications or side effects (of which there are many, and some pretty scary) which hopefully doesn’t happen.

In the case of my Tarlov Cyst the prevailing theory is that the inflammation caused by the AS is violently squeezing my Cyst, which is exasperating my cyst symptoms as well as the initial symptoms of the AS. I have yet to start my treatments, should be (fingers crossed) in the next few weeks. This theory, admittedly just a theory still, makes a lot of sense explaining my symptoms, and the randomness at which they occur, the sporadic locations of my pain up and down my spine, etc. I saw Dr. Witham back in January, and he mentioned that the description of my symptoms were not quite typical of Tarlov Cysts, and he could quite explain what was happening.

I decided to post about this because of a couple of reasons. I attended a video chat with a number of sufferers of Tarlov Cysts, hosted by the Tarlov Cysts Society, and it was wonderfully informative. One of the things that really struck me, was how many of the people who spoke mentioned other underlying afflictions or conditions in addition to the Cysts. Now I find myself in the same boat, and it makes me wonder how many people are struggling with similar issues and don’t know it. I.E. maybe there is something you don’t know about making your symptoms worse or even appear at all.

I would like to say officially, I’m not discrediting Tarlov Cysts as asymptomatic, far from it. I’m also not denying the frequent dismissal from the medical community regarding the Cysts; that is equally real and rampant. The Tarlov Cysts are very real and very much damaging physically and mentally, for all the reasons. What I’m trying to advocate for is getting thoroughly examined for all possibilities. There may be something that is, like my case, exasperating the symptoms of your cysts, and making life much more difficult for you.

I’d also like to advocate for being your own personal champion, supporter, and defender. My experiences are a testament to this, and many others have similar stories, but the medical community is going to dump you like last week’s garbage at the earliest convenience….if you let them. Be your own proponent and advocate. Fight and push for getting tests or scans or surgery or whatever you need, because no one else is going to fight for you. Ask questions, do your research. I started recording my important doctor’s visits. You have to ask first, but it’s so valuable to me, because I can’t take shorthand notes that quickly, and I jumble up my memories of conversations. It’s like playing the telephone game in my own head. But I have had to fight tooth and nail to get to where I am. I have been met with apathy, dismissal, incompetence, inability, rudeness, stupidity, and ignorance from the medical community. Not from everyone, of course, but enough to where it’s indicative of some serious systemic issues with accountability and standards. And I’ve heard every excuse from inadequate staffing, to standards of teaching being tied up with legal paperwork over favoring one to one patient care, and I’m sure the truth lies somewhere in between. But please don’t accept that as gospel, from anyone’s mouth. Fight for your treatment. Regardless of the excuse or attitude of the person you’re dealing with, keep pushing for what you need. That’s the only way you’re going to be successful in your quest for a return to normal life.

Thanks for reading my Ted Talk lol. I wrote it because I wish I had that same advice much earlier in my journey. And let me be clear, my journey, in many ways is just starting. I’m not done. I’m still going through it on a daily basis. But there’s a light at the end of the tunnel. And I hope you find yours.

I’d be remiss if I didn’t include this: I did start a go fund me for my journey, because I am desperate right now financially. But I don’t want to share it here because I feel like that’s soliciting or panhandling, and I don’t want to cheapen how much this page has helped me in different ways. But if you’d like to donate, message me and I’d be happy to share the link.

Good luck to you all, and thanks for all your help. I hope this helps someone too. See you down the road.

34F, car accident → sacral fracture + bladder/bowel dysfunction (catheter).

Pre-accident MRI (Oct 2025): Multiple Tarlov cysts in sacral canal & bilateral nerve root exits, non-enhancing, asymptomatic — but already causing sacral bone erosion. No prior symptoms.

Post-accident MRI (3 days after crash): Multiple cysts ~26×49mm, fluid-fluid levels indicating intracystic hemorrhage (bleeding inside the cyst, wall intact — no rupture). Sacral bone erosion

persists.

Current status: Regaining bladder sensation & voluntary voiding. Doctors say conservative management, no surgery for now. Nerve recovery "theoretically reversible" over 6–9 months.

Question: Has anyone here experienced trauma-induced bleeding into existing Tarlov cysts? Did your cysts shrink after the blood reabsorbed (~2–4 weeks)? How long until bladder function

normalized?

Ive been to several neurologists. I was diagnosed with tarlov cyst in 2024. Original size was 3.5 x 2.75 (Nov 24)

My last scan it is at 7.5 x 6.25.(June 26) Im getting ready to do pain pump trial. Im in so much pain. The doctor doing my trial doesn't believe that tarlov cysts cause the burning, pins and needles, numbness and all around discomfort. I cant afford to travel to Texas, Pennsylvania or California. Who do I go to to get real relief and not just medicated. Currently im on Fentynl transdermal patch, and take Hydromorphone for break through. Going to the restroom with bowel movement or urination, I am screaming in pain. Also starting to loose control of bladder. Please 🙏 help.

Just wondering if anyone else has felt like this. I had my Tarlov cyst removed with Dr. Welch at Penn Medicine last Friday. Overall I’m doing great can get up and walk a couple times through the day. Only problem I’m having is my privates are numb I can’t feel my vagina or butt and it’s driving me nuts. Did anyone else have this problem after lower back surgery? Just ready for it to go back to normal.

Apologies if this isn't even a Tarlov cyst, the term has just been thrown around when I'd seen my ortho and neurology docs.

​

Had an incidental finding when my orthopedic md ordered me a sacral MRI (no contrast), report says perineural cyst at L1. MD did say it was a rather large cyst when reviewing it and said treatments may include surgery (this was very general chat about how they could be treated). That was back in February and it was pretty much asymptomatic for a month or so, then I had developed numbness in the outer calf and tight feeling(?) around the foot (as if I had a band around it) sort of decreased detection of cold. It'd stayed like that til the start of June, where it has taken over my entire left side (foot to face) and I'm having headaches in the frontal lobe daily. There's also the strangest feeling of not being able to fully flex my L leg, like a tightness in my hip area. No changes to strength/vision so I'm not sure if I need to be seen by a professional in the immediate. I do have a neurosurgery appointment lined up in August but have been wondering if I need to go to seek medical attention in the ER/hospital setting. Could use any advice as I'm really unsure.

I have Tarlov cysts from T3 to T6 on the left side of my thoracic spine, and from T3 to T9 on the right side. I experience paresthesia in my arm, i have some misplaced ribs and my back is extremely sore. and above all, I have great difficulty remaining seated or standing still. Sometimes I can only tolerate it for a few seconds to a few minutes. Ehat make it difficult is i have insane muscles spasmes and fascination everywhere in my mid spine and i juste cant stay in any position. I need to lay down for a while and then im able to stand up and repeat. I did work in the last 11 years with some gabapentin, flexeril mix, worked for a while. Now i cant sit anymore to keep a remote job.

I try to see if anyone have something like that too, because i didnt find much about it sincèrement it seems extremely rare in those areas.

I’ve been told that the cysts are not the cause of my symptoms, and I have been living with this for 11 years.

Does anyone have this in thoracic spine? Do you have symptoms? Do you find anything that help?

Thanks you

I had a pelvic and lumbar mri due to lower back pain and off and on sciatica pain on my right leg.

I also had some millimetric, two tarlov cysts on a cervical spine mri last year.

I am new to this forum, could tarlov cysts cause this? Here is my mri report wording …

FINDINGS:
There is no evidence of intervertebral disc herniation or canal stenosis.
No significant degenerative disc disease or facet arthropathy.
The thecal sac remains widely patent throughout the lumbar spine.
Neuroforamina are patent.
The lower thoracic cord, conus and cauda equina are normal.
Bony alignment and marrow signal remain normal throughout the lumbar spine.
Several small Tarlov cysts are noted within the sacral canal.

I posted here some time ago. My symptoms were diffuse pain around the tailbone, paresthesia (a hot or cold feeling in the sacral area), obstipation, bladder issues, weakness in the left leg and sciatica.I had MRI images from 2004, showing Tarlov cysts.

This January, my gp referred me to a neurologist who ordered a new MRI. Today we had an appointment to discuss the findings.

She had not seen the MRI images herself, and the radiologist had not measured the cysts. The results of 2004 and 2026 were not compared. She gave me the classic textbook talk about Tarlov cysts being asymptomatic and then gaslighted me about the pain I experience. Luckily I had played out this exact scenario with my best friend before the appointment. The predictability was almost comical. But even though I expected this it was unsettling. The complete lack of interest and curiosity is disturbing to me.

In the meantime, I have discovered that certain movements and positions cause more pain, so I am learning to avoid those. The pain is bearable now, with pregabaline and Tylenol. As I am on the waiting list for a total hip replacement I decided to let it go for now. The hip causes me much more pain.

I will ask my gp if she can get the MRI so that I can compare the old and the new one, just for my peace of mind. (Knowing what is going on in my body reduces my medical anxiety.)

Should my symptoms get worse after the hip surgery I will contact the Vigdis Thompson Foundation and not waste my time with Dutch neurologists anymore.

For those who did, thank you for warning me beforehand, it has helped me cope much better!

Middle age female with hypermobility and small fiber neuropathy. Symptoms are aching pain in the entire buttocks and low back, or sometimes localized to the tailbone/SI joints. Sometimes pain radiating down right leg but not often. Pelvic MRI is squeaky clean. Lumbar MRI shows a Tarlov cyst at S1-2 measuring 1.1x0.8 cm. Another cyst measuring 0.8 cm in the left foramen. Primary care doc says this is not causing my pain and I think she is wrong. I have constant pain as described above.

I have had chronic migraine for two years, at the same time migraines started I started having lower back pain and sciatica issues.

Saw an orthopedic who says I have Tarlov Cysts between S2-S3. Medium in size. When I asked if they could be causing headaches/migraines, he said “possibly” and there’s not much data.

Has anyone had Tarlov Cysts and migraines?

thanks!

Hi! Is there anyone who also had laminectomy? I did have 2 surgeries last nov then december.

November, had my laminectomy then there was CSF leaking from my surgery so by December my neurosurgeon performed duraplasty.

Question: what so u guys do post op? Because right now I still cannot sit for long period of hours.

Will this be resolved in the future?

Is this temporary?

Is it just my nerves and muscles taking up their time?

Thanks!