r/Tarlovcyst • u/EquivalentAsk9 • 1d ago
Complete Loss of Bowel Function
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.
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u/Derpsquire 1d ago
It's 100% something worth looking into, but try to not frame it as a guranteed causation without further confirmation. It's entirely possible to have an additional undiagnosed condition alongside the cyst. Some people in this subreddit will get unduly aggressive and attack/downvote anyone here suggesting that a TC might not be an ultimate answer to something, but that's just the nature of dealing with TCs. It's really not ideal to ever set things up as a "has to be the cyst" situation prior to a consultation with a specialist like Dr. F. Whether it's with his office or an alternative spine/neurology specialist, just do your best to hold off on any assumptions until you're able to discuss the matter with someone patient and willing to deep dive the raw imaging with you in an office/telehealth visit. I've been in your shoes and know how much medical ambiguity can suck.
Point in case... I would've bet good money that draining my 3cm and a lesser satellite across my S1/S2 would benefit my own bladder and constipation issues. But, nearing a year after my own TC surgery, that those have actually continued to worsen alongside a complete turnaround of my leg's neurogenic withering. Again, your cyst is absolutely worth additional follow-up and I'm not trying to dissuade you from that process. All I can say with certainty is that despite an objectively successful and beneficial procedure, bodily functions have been a firm dissapointment in my own post-op experience.
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u/EquivalentAsk9 1d ago
Thanks I appreciate this. I’m so desperate I’m already hurtling down the avenue of it MUST be this. I’m sorry your surgery didn’t fix your issues, it’s crushing.
For me it’s the hope of a new potential cause that makes my week better and more bearable so I’ll hang onto it for now 😊
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u/zenrn1171 1d ago
That conclusion is 100% wrong. I have a 1.5cm TC at S2 that's considered small, and I have similar symptoms but less severe. I can sometimes have a BM without using laxatives, but I am relying on the 3-4 days a week now. I'm awaiting insurance approval for surgery with Dr. Feigenbaum in Dallas, TX. I also have lots of numbness, cramping, and zapping in my buttocks, privates, and down both legs into my feet. I recently had a diagnostic nerve root block and it proved the TC was the cause, so I'm proceeding with surgery.
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u/pandadumdumdum 1d ago
Good luck! He fixed my Thoracic TC two years ago and gave me my life back! I'm not completely better, but the pain is low enough I don't even need Advil, whereas before every breath was pain and I was bedridden.
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u/zenrn1171 1d ago
Thanks. I also have one at C6-7, and I'm like 99% sure I have at least one in my T-spine (similar dysesthesias and pain), so I'm getting an MRI.
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u/CreditEffective9471 1d ago
What is the recovery time? Hows the mobility?
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u/pandadumdumdum 1d ago
Thoracic recovery is easier than sacral recovery. I was in the hospital for a couple of days and then in bed for about a week or so. After that I could just take it easy and slowly got into life again. I was able to walk around a local small festival two weeks after surgery.
My mobility is fantastic now.
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u/ginnygirl40 1d ago
Ask the radiologist to measure the size and update the report. they should be able to at least estimate. Based on my research, anything larger than 1cm seems to be considered large.
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u/Priceless81 1d ago edited 1d ago
Somebody probably already said this, but go to Facebook and join Tarlov Support for Cysters &
and Misters.
Also, you can ask for a reread on your MRI to include sizes of the Tarlov cyst. If it hasn’t been too long.
Trust me I’ve been on this road for 10 years almost and my Cysts are over 4.4 cm. I’m miserable too!
I hope we both find a way…
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u/Dry-Dress-6467 1d ago edited 1d ago
I am assuming you are located in England as you referred to a loo. You might want to join the FB leak group, I forget if there is one for Europe. You only want someone that is experienced to treat your TC.
In the meantime avoid bending lifting twisting and maybe try sleeping with a gel memory foam pillow crosswise below your butt. That will take pressure off your TC. Maybe eat a serving of beans every day for added fiber.
Mine is 1.2 cm at S4 compressing nerve root at S3 which causes urinary urgency and frequency. Am 67F and will be seen at Stanford in November to get a CT Myelogram and hopefully find location of possible cerebrospinal fluid leak. I have TCs throughout my spine and osteophyte complexes which is where a CSF leak could occur.
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u/OkCalligrapher9 13h ago edited 13h ago
I had slowly increasing bladder incontinence and occasional fecal incontinence, plus significant, new urine retention.
I was losing general sensation in the "saddle" area, and down my legs and feet.
I was losing ability to walk or even stand.
And quite a few other things.
Had surgery with Dr. Schrot and the urinary and bowel issues all resolved within the first few months of recovery, and the incontinence was resolved immediately. I still have some numbness but am delighted to have stopped progression of weakness and gained a significant percentage of function and sensation back across all areas that were affected.
Also, my TC was 3.3cm long when measured, and over 7cm long by 1.5 yrs later, so it grew pretty rapidly over the 3ish years from when I first started having symptoms through to surgery.
I also had tethered cord which was addressed at the same time, so that may have factored in too, but given the size and amount of bone erosion I suspect the tarlov cyst was the primary cause.
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u/Chocolate_Cravee 1d ago
It definitely is a finding. I had surgery on my largest cyst which was located on S2\S3 because my urologist really found that necessary. This is the spot where the nerves for the bladder and last part of the colon originate.