Tarlov Cyst on the spine: Any advice?

Posted by vadaanglin @vadaanglin, Jan 31, 2019

I have a large tarlov cyst 2.5cm and 3.5cm on the spine in the lumbar region. Some what rare and doctors seem to know little about and say they are nonproblematic. I'm having chronic pain. Any advise will be appreciated.

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Profile picture for sarsarson @sarsarson

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?

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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!

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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.

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Profile picture for candybeason45 @candybeason45

I'm assuming he's the only one? I've came across his name on Google & actually on TikTok. He's almost 4 hours away from me 😭 He's in Dallas & I live in Shepherd, Tx. I'll call to see if he has a closer office around me. Thank you for reaching out.

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Try Duke University and /orNotr Dame or another teaching Neurosurgery
university.

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Profile picture for candybeason45 @candybeason45

Does anyone know a neurosurgeon who treats Tarlov Cyst in Or close to Houston Texas

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Well now I am thinking they didn't see a cyst because I just had a cat scan done of my abdomen and pelvic area and it showed multilevel degenerative disc disease & my SI joints are Sclerotic causing me to have Ankylosis Spondylitis which now I am taking Humira Injections for every 2 weeks

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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?

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I have a cyst that is about the same size as yours. My pain is chronic. I don't want to take medications or undergo injections.
I do get relief using my inversion table: Each morning I'm on the inversion table at -15 degrees anywhere from 5-10 minutes followed by a 20–25 minute steam sauna. Some days it is hard to simply lay flat on the table before inversion due to the pain. After a minute or so, the pain goes away! It takes time, but totally worth it. I can feel my muscles relaxing. My headaches have also improved since I started this routine. I figured if it is CSF pressure causing the cyst, take the pressure off. If I have had an active day, I with use the inversion table before bed. I wish this could be studied. It is a non-invasive, low risk, and low-cost treatment that works for me. I haven't seen this in studies before. Please do not try this before checking with your doctor first.

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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

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Profile picture for frances007 @frances007

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

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Best of luck!

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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...."

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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.

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