Tell me about symptomatic Tarlov cysts

January 4, 2018 7:35 AM

I have been having worsening paralumbar/lower back pain since early spring 2017 and was put on the waiting list for an MRI. The pain now extends partially down my leg and is waking me up at night. I finally had the MRI and it didn't show much, but the report did make note of several Tarlov cysts. Have you had experience with symptomatic Tarlov cysts?

My GP went over the report with me and concluded that he couldn't see anything that was causing the pain so he wants me to try just treating the symptoms using a topical NSAID (Voltaren) because I can't take ibuprofen or other oral NSAIDS (stomach issues). I'm not on any other painkillers and would prefer to treat the root cause before asking for narcotics, which coincidentally he's very reluctant to prescribe. That's fine for now, as I have a high pain threshold, but I won't be able to handle the pain if it gets a lot worse. If the pain is still there in a couple of months he said to come back. He didn't mention the Tarlov cysts, and I felt so rushed by him during that appointment that I didn't have a chance to ask about them.

I was not happy with his assessment--it's been nearly a year with worsening pain that is waking me up at night now--so I have an appointment today to see the surgeon who referred me for the MRI, to ask her about options.

I researched Tarlov cysts, and apparent although usually asymptomatic, sometimes they can cause the same kind of pain I've been experiencing. They can be degenerative. However, they're not well understood and many doctors don't know about them or that they can be problematic.

Do you have experience with Tarlov cysts, especially the symptomatic kind? If so, how were they treated? What were your doctor's concerns? What are things I should be asking the surgeon?

I will ask for a referral to a specialist today but I'd like to know what kind. I'm in Canada so I can't just go to a specialist, and I'm stuck with my doctor because there aren't any others who are taking patients where I live.

posted by hurdy gurdy girl to Health & Fitness (8 answers total)

My mom was diagnosed with Tarlov's cysts. She had a terrible flareup where she could barely move, in part because the pain caused tension and muscle spasms and that became a pain cycle. My understanding from research at the time was that there isn't much you can do about them. There are only a couple of doctors in the US that operate on them, and even then it often doesn't help.

She eventually had a couple of massage sessions that helped relax the associated muscle spasms and the crisis passed. But she still has painful spots associated with the Tarlov's.
posted by Preserver at 9:37 AM on January 4, 2018

No experience with Tarlov's here, but two comments on the symptomatic relief. It is possible to have gastrointestinal effects from Voltaren gel, though not as likely as with an oral med. But be aware. Also, my doctor recommended SolonPas w/lidocaine for a pulled muscle. It's OTC here, but discuss with a doctor. It's a bit expensive as a regular thing but it might help during flare ups.
posted by SemiSalt at 10:19 AM on January 4, 2018

You need to see a neurologist or neurosurgeon, not a GP. One with experience in this area or in spinal injuries, not a general neurologist. And you need to ask about neuroinflammation, nerve root clumping and adhesions caused by the cysts. In the meantime the only thing likely to help with the pain is steroids, specifically medrol or dexamethasone orally. Ot toradol which is an injectable nsaid. If a drug doesn't cross the blood brain barrier and cross it well it's useless to you

Be really aggressive about this, you need answers and to stop any inflammation before it causes permanent damage. Your GP should be willing to let you do a medrol pack as a trial and to refer you asap.

I don't know where you are but I can't emphasise enough to seek out a good Neuro who does spine stuff specifically. There is a tarlov cyst FB group which would be a good place to start.
posted by fshgrl at 1:17 PM on January 4, 2018

Ask the orthopaedic surgeon for referral either to pain clinic or physical medicine and rehabilitation (PM&R) specialist if there is nothing to be done surgically. I am sure you will wait 3-6 months. But those folks can do the procedures that keep you comfy (GP would probably not manage injectible pain meds or steroids).

Have you done physical therapy? Could it possibly help? You can do that while you wait.
posted by crazycanuck at 8:44 PM on January 4, 2018

Response by poster: Thanks everyone. The general surgeon has referee me to an orthopaedic surgeon as she felt that was my best bet in terms of local people. I'll see her in 2 weeks or so. If I need to see other specialists or a pain clinic I'll have to travel about 800 km so I'll try her first.

The answers in this thread have at least given me some ideas of what to ask for next if the orthopaedic surgeon is not helpful. In the meantime I will also be accessing physio and an RMT to see if they can help.

Thanks also for the heads up about the Tarlov cyst FB group and the warning about topical Voltaren for stomach issues.
posted by hurdy gurdy girl at 9:47 PM on January 4, 2018

Be careful with pain clinics. Epidural injections are all a lot of them do and the research shows they do nothing at all in the long term and can be very harmful. They aren't FDA approved and the manufacturer of some of the drugs specifically labels them not for that use. They are really not good when you have spinal inflammation of any kind.

The doctors make like $5k a pop so they push them really hard but do your research on PubMed and the NHI website for anything they push. Pain mgmt is 85% quackery and scams. Especially now.

My GP hands out medrol packs like candy, I swear. It's 5 days of steroids, I'd try it and see if you get an improvement. If you do you learned something.
posted by fshgrl at 11:17 PM on January 4, 2018

If you think I'm exaggerating go to the student doctors dot net forum for pain management specialists and read how they talk about their patients and how poorly they think of them. I showed it to my ortho and pointed out that one of the posters obviously worked at a clinic in our town and she was appalled. She has not referred anyone there since.
posted by fshgrl at 11:25 PM on January 4, 2018

Here is a nice example.
posted by fshgrl at 11:40 PM on January 4, 2018