Tarlov Cyst on the spine: Any advice?

I sadly am in your same boat. I have several large sacral Tarlov cysts with the largest one at 3 cm and more up my spine which are not symptomatic yet. The cysts are eroding my tailbone and caused a lot of low back pain. The ones in my sacrum are symptomatic and caused me much pain in my lower back and affect every thing below the waist. I have to meet her out how much I sit stand or walk and I have to have several lay downs during the day. doctors are ignorant on the subject and do not understand Tarlov cyst at all. I was actually diagnosed by my chiropractor who very kindly called me on the weekend and told me it was going to be life-changing. That was six years ago and I am so much worse. I found out I have ehlers-danlos syndrome also. I have talked with Doctor F. in Dallas Texas, the only one who I would trust to operate on these. Do not get the fibrin glue it does not last more than a few months and can make surgery down the road more difficult. I am not a good candidate for surgery so I will live with these the rest of my life probably in misery. Aleve is the only over-the-counter medicine that helps and I have taken it every single day for 6 years. I take Flexeril when I am in a bad flare-up. Ice, heat, Epsom salt baths, Tens, salonpas, biofreeze, are some things that help. Exercise makes mine totally worse and sends me into a flare up. Swimming pool is great therapy but don't overdo it. on Facebook there is a Tarlov cyst support group I would recommend joining that and you can search at the top for any types of medications that people are using. I just keep praying that someday in the future they will have a way to operate better on these things! Wish I had better news for you!

Hello @aquafun23, welcome to Connect. That certainly sounds painful!

Since this is a discussion hasn't been active recently, I'm inviting @bogobarb, @qball2019, @joken, and @summertime4 back to this conversation as they also posted about being diagnosed with a tarlov cyst. Do any of you have any helpful tips for aquafun23 on pain management for Tarlov cyst?

You may also want to check out another discussion where they posted about this issue as well, you can find that discussion here, https://connect.mayoclinic.org/discussion/perineural-or-tarlov-cysts/.

@aquafun23, Is there a tool or diary you use to help measure out your exercise and pain levels? It seems like a lot to keep track of but has helped you figure out what causes flare ups.

You can send your MRI to Rudolph Schrot in Sacramento CA and Wendy (his assistant) will get back to you pretty fast with some questions. Its not too far. He is with sutter health.

Hello @jkm79 and welcome to Mayo Clinic Connect. Thank you for providing a resource for @bogobarb to explore.

If you're comfortable sharing, what is your personal experience with this provider?

Hi, I was diagnosed with a Tarlov cyst at S2 one year ago, and again last month. I received an epidural steroid last year, but no other treatment. Now, symptoms are becoming increasingly worse, including, bowel and bladder issues, neuropathy, migraines. I am studying everything I can, educating docs as I go (so far: GP, GastroEnterologist and Orthopedic Spine surgeon). I am currently searching for a neurosurgeon who has treated these cysts. The Tarlov Cyst Fdn lists 3 docs, in Dallas, Sacramento and Silver Spring, MD. I am in the process of setting up a video call with a surgeon at Metropolitan Neurosurgery in MD (altho the doctor listed on the Foundation's website does NOT take Medicare, so I can't see him). I stumbled on Penn Medicine in PA that lists Tarlov Cyst as one of the conditions they treat, and that seems like a small victory! Are there any other places to look online for a "complete list" of experienced neurosurgeons? I really appreciate a community of folks with whom to share experiences and information. Thank you!

@peacenlove Welcome to Mayo Clinic Connect, a place to give and get support.

You have been diagnosed with Tarlov cysts and you are looking for experienced neurosurgeons that have treated this condition successfully.

Members like @qball2019 @anita1940 @ftrice @jillkristina @wisco50 @bill54321 @arlenejc have experience with this topic and may be able to help.

Below I have linked another discussion related to tarlov cysts that you may find of interest. You may want to scroll through the previous posts and looking for suggestions.
- Perineural or Tarlov cysts https://connect.mayoclinic.org/discussion/perineural-or-tarlov-cysts/

Below I have linked the Brain & Nervous System group because you mentioned that you were looking for a neurosurgeon. You may also wish to scroll through the previous discussions and topics in this group as well.
- Brain & Nervous System https://connect.mayoclinic.org/group/brain-and-nerve-diseases/

I'm wondering if you have attempted to locate facilities that treat tarlov cysts via journal articles?

Im in BC,Canada.Talking to my lovely personable GP is useless,says lots of words and excuses but no answers for my pain issues. I have had MRI's and it seems I have Torlov cysts too. I attend the pain clinic for various treatments non of which work very well. EVERY Dr says they don't cause pain, 'they mean nothing and you can be born with them'. The person who ever it was that reported on my MRI's said " there is no account for this woman's pain' so again another Dr who has no idea. I bet if someone would listen to me and treat me in a holistic way I could show them exactly where the 2 that I have are because I can put my finger right on the exact spot on my spine where the pain is radiating from. I keep wondering if it would be worth me going back to live in UK to see a Dr in my own country to see if they would have answers. I am 67yrs old I've had pain since I was 29yrs old but this pain is about 10yrs old and I feel I am just sitting waiting to die because there are so many things I can't do. I went back to UK 2 Xmas's ago and I was in so much pain on the 10hr flight I feel I can't do it again, I had to constantly move and if anyone knows what a Huntington's Patient looks like well that was me on the plane. IWISH SOMEONE WOULD COME UP WITH AN ANSWER.

@summertime4 ... just a quick note as noticed you used to live in UK.... I moved to Canada on my own 1962... all my close family passed away now so will never go back unless ashes to put with theirs. I have heard "good and bad" stories of doctors in Canada where I live; in USA from friend who spends winter there (although I went to a clinic in Florida once and they treated me royally); and in UK. Truly sorry to hear about your pain... I don't know about Torlov cysts but this is 2021... and you are still in pain from them? I can take quite a bit of what life has and will throw at me but I have a very low pain tolerance and what it does to me is make me very emotional. So many illnesses and such may bot be life-threatening but the sure are life-altering. Just wondering if you have checked out internet sites from UK - I notice lately there are a lot of reliable sites from many countries. Just wanted to say Hi ad I hope someone here - this great site - can lead towards an answer. J.

Hi peacenlove... I had an MRI done end of September 2020 after 8 months of tailbone pain (resulting from a fall in Nov 2019 which resulted in a broken tibia, the tailbone stuff didn’t manifest itself till a few months later). All PT people would say was that it was inflammation. Anyway, the MRI revealed 3 Tarlov cysts in S2 area. Now I am in constant pain and the life I knew is gone. I live in PA (near Harrisburg), and saw you mentioned Penn Medicine ... I did make a trip to Johns-Hopkins spine neurosurgery center about a month ago. There was only one surgeon who would even talk to me about it [and they don’t even list Tarlov cysts in their services]. And, because it was a fall (trauma) that started it all, he had me get a CT scan of sacrum and coccyx to rule out any fracture. There was none. Still, he wants me to try getting a steroid injection in the coccyx area first, and see if that helps. If it does help, great. If it doesn’t, then J-H can go to step 2 (the cyst drain/fluid injection) ... petrified of that! An interventional radiologist does that procedure. I will turn 66 in a few months, and the retirement dream my husband and I had seems to be fading .. the places we wanted to visit, the things we wanted to do. It’s like getting through the day is all I can do now.
Can you share with me the name of the surgeon you found that is actually in PA (and if their is any level of experience that is made known)?
I hope your video conference with Metropolitan Surgery goes well ... what a boat we are in huh? So incredibly sad that science does not research methods of better surgery for these damn things!

@mommacat2 I so feel your pain. May God be with you and assist you in finding the help you need. Retirement should be a time to do the things you couldn't when you were working. I am so sorry for what you are going through.