Tarlov Cyst on the spine: Any advice?

in reply to @bascogirl Hi, I had Tarlov Cysts removed in the past, and now have more that I will be seeing the same surgeon for next month. Rudolph Schrot in Sacramento CA is renowned for this kind of surgery. The pain can be extreme, especially for me because I have lost so much weight. However , following my surgery several years ago I felt great, as the surgery was a complete success. Because the surgery was such a success, if my doctor recommends another surgery I will have the same. The pain is impossible and not relieved by anything, really.
Best of luck

Best of luck!

in reply to @bascogirl Thank you. I finally got an appointment with the surgeon for early next month, even though he is "booked out far ahead...."

I had them and thought they were the cause of my pain- but it was just a guess.
Now that I look back, I realize that they are no longer there- because these cysts can resolve on their own.
I never sought treatment for them.

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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