Tarlov Cyst on the spine: Any advice?

Hi! I had Tarlov cysts a number of years ago. They resolved on their own, which can occur. We were never sure if they were causing pain. That said, last year my neurosurgeon ordered a nuclear medicine test- a bone scan-SPECT CT. This test is often used to locate cancer that has metastasized. However, it can also be used to find pain generators. The imaging is fascinating and painful areas literally light up the screen. Since few surgeons manage Tarlov cysts- may I suggest that you ask your Dr. to order this test so that you are sure of the cause?
Many areas of the spine can be painful- but can also cause radiculopathy- or pain that radiates out from the original site.
Good luck!

I too was recently diagnosed with a large assist in the sacral area. After another neurosurgeon and multiple pain. Doctors missed it for years. I have multiple autoimmune issues, including interstitial cystitis which I now think was a misdiagnosis because the cyst can cause bladder pain. I even have an interim device to help with that pain. But nothing touches the chronic pain that I am experiencing with this cyst, especially at night, throbbing, no asleep. I’ve taken ibuprofen, I’ve rubbed CBD oil 1200 mg, I’ve done lidocaine patches, I’ve done muscle relaxers, I’ve done sleeping AIDS from a doctor, Nothing is helping, and I am so desperate for some relief. I’m very happy to find this for him and speak with others who have also been diagnosed and what you are doing.

Thank you so much for posting this and offering some positivity to those horrible chronic disease. I have been looking at a few doctors in the country and we look forward to contacting this doctor in the new year. Did you have problems with Insurance?

in reply to @dmcny No, I never had any issues with insurance, other than my copayment for a three day hospital stay ( I probably could have come home sooner, but you know how that works). In any case Dr. Schrot is a magician when it comes to removing these cysts, and I hope that he will agree to operate on me after I see his PA in January. I am not sure if they are more painful now because of my weight loss or whatever, but I can say that the pain is remarkable and now I feel like a "old lady" with her heating pad each morning. However, I am getting a new SOFT mattress in a few weeks and I hope that this will take some of the pressure off of my back, given I sleep on my back. Once I am asleep, I do not move....keep me updated on your progress, and if you come to California for the surgery, let me know. Take care

I forgot something. Here is another non profit that I subscribe to that has some excellent podcasts, primarily for arthritis and other maladies. I have listened to some of them and they are excellent.
https://ghlf.org/

Bless you heart I will pray for you!

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Yes, Tarlov Cysts that cause pain are rare. However, I had a large one the size and shape of a hotdog. I had a very good neurosurgeon from Johns Hopkins in Baltimore, MD that was very knowledgeable on this issue. After many tests and a few aspirations, he decided it best to go to one of the best neurosurgeons on the east coast, Dr. Welch at the PA hospital in Phildelphia, whose specialty was Tarlov cysts. I trusted my neurosurgeon and met with Dr. Welch. He scheduled a surgery. (Due to the fact that this Tarlov cyst, over time, wore away my sacrum in a large area, I had to have a synthetic titanium plate attached to what was left of the sacrum) The operation was performed without complications. The recovery was awful, and very painful. I continued to see my neurosurgeon from Johns Hopkins until he passed away a couple of years ago. I'd say that I never really fully recovered because the plate that was put in my sacral area has since broken. No doctor will remove it. I do believe that something is compressing my nerves somewhere and causing my neuropathic pain. I have seen Pain Management specialists to try to "manage" my pain. It's there that I am prescribed medications. I've had many nerve injections that have yet to work to decrease my back pain. I have had 3 TENS units implanted and removed because they caused me to get infections. I am taking a number of medications to help me tolerate my pain. I am currently the following medications; a narcotic, an antidepressant, an anti-spasm and an anti-inflammatory medication. They only take the edge of my pain. On a scale of 1 to 10, I can honestly say that I've never really gone below a 7. About 10 years ago I started with pain, tingling and numbness in my feet. I had a core sample done in my calf and the results showed that I had small fiber neuropathy. A neurologist tried different medications for the pain and that's when I was put on an antidepressant that I'm on at this time. Last year I had a nerve conductive study performed to see how my neuropathy had progressed. The results showed that my small fiber neuropathy has now become worse. I now have peripheral polyneuropathy. The pain from this has creeped up to my knees. It is also in my hands. I have a visit scheduled to see the neurologist to discuss how to deal with this. I'm sure that she's going say that I should continue with my medications, try physical therapy and exercise.
None of these physicians or pain specialist have ever been in this kind of pain or they wouldn't be telling me to exercise. I can barely stand on my own two feet and have to bend over and lean on countertops to stand up. I hope this helps. I feel for you and I hope that you have more success than I.

I had Tarlov Cyst surgery at the PA hospital. Dr. Welch, the neurosurgeon performed my Tarlov surgery.

And I for you my friend

Hello,
I had an extensive workup and after several orthos who did not know the cause for my sudden onset of pain I was finally diagnosed with several Tarlov cyst in my sacral area. My images were sent to Dr. Feigenbaum , a neurosurgeon who specializes in trading Tarlov cyst ,in Dallas, Texas who recommended surgery. He and a doctor in California are the only two that really have extensive experience in treating these and it takes several months to get on his schedule. I have researched the techniques and read many firsthand accounts from a “Tarlov cyst support group on Facebook”. The procedure is very scary and a very long recovery up to two years. Some people say it gives them their life back while others are made worse. My pain has decreased significantly with time as I have been dealing with this for about six years and I have more good days than bad so I have elected not to have surgery as long as I am somewhat functional.