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Tarlov Cysts

AnonymousUserAAnonymousUser Posts: 49,662
edited 06/11/2012 - 8:39 AM in Back Surgery and Neck Surgery
I have had tail bone pain for 8 months. I've had 5 steroid injections. I've seen a Urologist for retenion problems, who sent me to a Pelvic Pain PT. She is awsome but I'm still trying to find out what happens next. I've been back and forth with my Neurologist who thinks it's way to small 8mm by12 mm to cause any problems. I'm in constant pain and can't sit, my buttock is iccy numb on the right most of the time. I also have sexual disfunction. What do you have to do to get a Dr. to do something?


  • I just love that they think it is too small to cause pain, which is obviously not the case. I have a Tarlov cyst at the S1 level, and, my surgeon didn't even bother to tell me I had it. So, for 18 months, I have basically thought I was losing my mind. The surgeon kept treating me like it was in my head and like I was being a nuisance. The only reason I know I have it is because I needed a copy of the last MRI report for Disability and found that lovely statement. When I looked them up, it is every symptom I have been complaining about each and every time I have to back to the doctor.
    So, now comes the fight of trying to get this looked after.
    Don't stop fighting, and be aggressive hun. Make them listen to you. I know that alot of doctors think they are asymptomatic, but, a slight trauma can cause them to become symptomatic and after everything else has been ruled out, they need to address the cyst. Good luck to you hun
  • sunny1966ssunny1966 VIRGINIAPosts: 1,385
    I have tarlov cysts also. They say they don't cause pain. I have all of the symptoms listed on the tarlov cyst web site. No other problems were seen on my lumbar mri. My pain started as soon as they injected dye in my spine during a myelogram. I had never had this problem before then. Good luck in finding someone to listen to you. My doctor acts like it's all in my head. I wish he was right.

    Good luck,
  • I know this is a bit off topic, but wouldn't you like to kick your Dr, Surgeon, PC, in the ba*ls, then tell him the pain is all in his head. That type of Dr and treatment infuriates me like no other. My suggestion is find another Dr asap. Take your tests and research with you. Do not let them disregard your pain. I know that is easier said than done since they try to be so intimidating, but you have to advocate for yourself in too many cases to get the correct treatment.
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