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Tarlov Cyst



  • I too have a Tarlov at the S1 level, and I still wouldn't know about it if I hadn't requested a copy of the last MRI. I really thought I was losing my mind over the last 18 months as my pain and mobility and other symptoms were getting worse. When I saw it on the MRI, I just assumed it was nothing to be concerned about since my ortho surgeon never even told me about it. But, when I looked it up, it was every symptom I have been going back to him with over and over again. That just pisses me off. The migraines, the numbness, the screaming pain in the back, hip and buttock area is enough to make me crazy. And, even when I try to do a few little things, I pay for it desperately. I spend most of my time laying down to keep the pressure off. It is maddening. Now I have to wait for a neurosurgeon appt before I can even look into treatment,and there is no treatment available in Canada for me.
    Anyone with one, I look forward to chatting more about it, because, it seems like they treat us all the same. I don't think it matters who small they are, once they are symptomatic, it is so much the same pain for all of us. I am angry and tired of fighting this fight alone.
  • you all are dealing with this. how horrible.

    it is so frustrating to *know* what your body is feeling, and be told by doctors that you are wrong.

    i pray that you all have the strength and will to keep fighting for the answers and treatment you deserve!
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  • I was born with tethered cord syndrome, docs would never do a test growin up even tho I would wake up paraylzed some day just be walkin and fall because my legs would quit. Im tryin to make a long story short here. A chiro found it when I was 32 no doc would run a test the chiro was my last option and he did the test. So I had to go to another county because no doc around here knew anything about it and it was a birth defect. I had the surgey to untether the cord...Wow that was rough my back would lock up at random and I couldnt move last time was 8 weeks I never thought I would walk again..but it let go enough I can walk but the pain is so bad.I have a ruptured disc, a tear and a tumor at L4-5 but they say the cant fix it because of my spine. They tell me the pain comes from within my spine and it wont show on Mri. The pain in my back, legs, hips, knees, feet, it just keeps getting worse. The very first neruo I saw looked at my mri and said I cant believe you are walkin...so I am thinkin about maybe a 3rd opinion...they wont even do a lamaticomy on me they say it could paraylze me...some docs wont even untether a cord because they are afraid of paralysis. So my life now is alot of pain meds daily. The docs want me to do a pain pump but I am not ready for that yet. This is a rare condition, some docs even say its a form of spina bifida. Good luck to you all I sure hope you find some relief in the pain. But the aniexty of dealin with this pain daily and not bein able to go and do alot is whats gonna get the best of me..
  • KambyrKKambyr Posts: 1
    edited 04/04/2014 - 3:57 AM
    I realize this is a rather old post, but recently my doctor has told me he would no longer continue the pain management program that has been getting me through life and I cannot find any other doctor that even believes how much pain these two cysts between my S2 & S3 are causing me. Before they found these cysts I had tried everything under the sun. Lyrica, shots, physical therapy, arthritis creams and medicine, he even had me on anti-depressants for a stint thinking that it was all in my head. The two years leading up to the discovery of those cysts were the most awful two years of my life. I cried non stop, I had no energy to do anything and I could barely make it to work anymore. I was struggling with the idea that the pain was not worth the effort anymore. And then when all else had failed and my doctor had suggested I go see a therapist, as a last ditch effort he ordered an MRI and the tech discovered these cysts, which were hardly noted on my paperwork. I was told by the doctor interpreting my MRI scan that these cysts were not the cause of my agonizing pain, but then what else could it possibly be? How likely is it that after years of struggling to figure out what was causing me this chronic pain, two cysts found directly at my point of pain, are not the cause but just a coincident? I've read up a ton on these things since then and I was happy with my program, it was making it so that I could function again, but now hes referred me to a pain management clinic and even written me a letter explaining he would no longer be assisting me with my pain management. Just the idea of going back to how I was is turning me back into the emotional mess I was prior to the their discovery. I'm freaking out which is why I'm searching out some sane people again that might be able to offer help and support rather than what I am now getting from my doctors again which is pretty much telling me that the chronic pain I've been in for years and years and years ISN'T caused from the two huge cysts between my S2 & S3 that are connected to my spinal nerves.... ARE YOU KIDDING ME WITH THIS? Sigh... A co-worker was also recently diagnosed with a synovial cyst on her spin, and for some reason even those they two types of cysts seem to have an awful lot in common, the synovial cyst is viewed as something that can cause excruciating pain, while the Tarlov is not. I don't understand it.

    Thank you for taking the time to read my post. Please let me know if you've found relief Butter and if so how it was achieved .
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