Tarlov Cyst on the spine: Any advice?

My surgery was in April 2021. I’m still recovering. It’s been a long haul. My biggest goal was to stop deterioration, and the downhill spiral of symptoms I was experiencing by the time I had surgery. From that standpoint, it was a success. I haven’t gotten worse! I have gotten better but not as much as I secretly hoped when I was telling myself I just wanted to stop getting worse. The good thing is that my recovery has continued pretty noticeably now in my 3rd year post surgery. So, overall, I’m glad that I did it. Some people have a much easier time, others who I know have had more trouble than I. It seems to have a lot to do with our status going in.

How are you? What is going into your decision?

in reply to @vadaanglin I had one removed several years ago with great success. Best of luck. Dr. Schrot in Sacramento, CA recently completed a study on these cysts, and I suspect you may be able to find more information by searching for him online. He is a wonderful person and a great surgeon.

Hi. My daughter is going to see Dr. Welch. Did you get any better advice from Dr. F?

My daughter is 22 and has a large Tarlov cyst. I was just wondering what Dr. Welch and Dr. F. said (if you don't mind sharing). We are trying to get as much information about her cyst and how to treat it.

There are a couple of good FB groups you can join and get tons of helpful information.
Tarlov Cyst Society of America
Tarlov Cyst support for Cysters

I suffered with lower back pain for 8 years and had a fantastic, very knowledgeable neurosurgeon at Johns Hopkins that was familiar with Tarlov Cysts. I had an extremely large one causing a lot of pain. I had the cyst aspirated numerous times due to the fact that it kept filling back up. The Tarlov cyst got so large that it wore my sacrum to be paper thin. He recommended surgery to remove this oddity. He made arrangements for me to have this surgery out of state in Philadelphia, PA with a neurosurgeon who specialized with this type of thing. I traveled there to have this cyst removed. He removed the Tarlov Cyst and implanted a sacral plate. The Tarlov cyst is gone but the plate has broken in half and the hardware is no longer attached. I've had numerous spinal injections and nerve blocks, PT along with pain medication round the clock. No relief! I'm scheduled for another MRI tomorrow! I can't advise you on what to do. I feel your pain!!! 😒❣️

Thank you for your reply and I am so sorry I have been so slow to thank you.
I am enquiring for a friend, she is seeking another opinion at the moment. She can cope as long as she doesn't do anything, I don't know what she will decide to do. Prayers for your continued improvement!

in reply to @debduh11 I am sorry about the pain you must be having. I too had Tarlov Cysts removed, and more likely than not, will have more removed in the coming year. A recent MRI of my lumbar and sacral spine revealed many problems, including more Tarlov Cysts. Dr. Schrot in Sacramento, CA recently completed a study on Tarlov Cysts, which I may have already mentioned. He is a very good surgeon, and the last time he operated on my back, his work was a complete success. Presently I have to sit on one of those "donut" pillows because of the pain and the subsequent numbness in my legs after sitting more than 20 minutes. I will soon be seeing the pain management doctor and hopefully he will go over the MRI with me step by step, as opposed to the comment by my PCP post MRI which was, "it is all arthritis." No it is not. Best of luck, I will keep you in my thoughts.

Hi, everyone. I too have a cyst, but I suspect it is small in comparison to yours. It measured l 2.5 x 1.2 x 1.8 cm at S2 on MRI. Nonetheless, I would really like to know if my story is similar to any of you? I have a history of early degenerative disc disease and had spinal fusion L5-S1 in 2019. Was such a smart move. Pain free for a few years! However, I started having urinary issues. Frequency and urgency. I went to a urogynecologist and while my stress incontinence was gauged at minor, I still opted for the bladder sling operation. Simultaneously I had my ovaries removed because I was convinced the little cysts I was getting were responsible for the pelvic discomfort (though I think my surgeon was skeptical- I complained about pins and needles sensations in the vulva and clitoral area). Anyway, done. I still have the pins and needles sensations in that area. Also, I have had a return of low back pain. On the right side, if I drive for a while, it will shoot down into my foot and really hurts. The left side only goes to the outside of the knee and stops there. I don't take any pain meds, (other than a half of a muscle relaxer when it is REALLY bad) but I did just had SI joint injections and it has helped, but here is the thing: I wanted to cry when I read the radiology report for my MRI. The radiologist noted the Tarlov cyst but no comments on it- just the size. He also added a note at the bottom of my study basically saying all the disc height was normal and there is degeneration but nothing affecting nerves or any significant narrowing. He then cited a journal article that said the overwhelming majority of people my age have degeneration and or spinal narrowing and are asymptomatic! Made me just feel like I have zero reason for pain and am a nut. I am just wondering if the cyst is what is maybe causing the symptoms. Anyone else have anything like this or is it just me?