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Perineural cyst

AnonymousUserAAnonymousUser Posts: 49,578
Hi everyone, I just recieved the results of my latest MRI. I suspected it would read that I hab another herniated disc or that my DDD was much worse. But it says I have a perineural cyst at S2 on the right. The pain, numbness, tingling and all the other feelings are terrible. Now I'm trying to locate a Doctor to treat this who i willing to take payments (no insurance).I'm in the Orlando, Fl area.


  • I just recieved my MRI results and it said I have a 5mm perineural cyst S1. I am going to see a neurosurgeon in a few weeks. I don't know if it is what is causing my problems. My right toe is numb but the pain is almost gone. I guess I will have to wait and see. How big is yours???
  • sunny1966ssunny1966 VIRGINIAPosts: 1,385
    I have a tarlov (perineural) cyst that is only 7mm. I think that all my pains are from this. Have you found out any more information about this? Thanks
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  • Hi all I have just been diagnosed with haveing tarlov cyst. They did an MRI because they thought it was a herniated disc. I dont know how bog it is but I do know I have quit a few systoms. Numbness in my right leg, abdominal pain that makes me curl up in a ball, chronic back pain, sharp pains in buttox, leg and hips, and severe headaches. I feel pretty much alone because it seems no one in san antonio knows what it is. Funny but my doctor had to google it and said dont worry we can do surgery and it will be fine. not the case. For those of you who are still in the dark of who to go to for help go to the tarlov cyst disease foundation Mrs. reta has been a great help to me. She also gave me a number of a nuerologist in california that says even if my insurance doent cover it that they would require a 200 dollar deposit and will work with the rest. It is very costly. I was thinking if it comes down to it i will raise money have bbqs, ask for donations. Just keep your head up only god know whats in store for us. This disease is rare and it is very possible that it can be very sevre. please get help. My prayers are with you all.
  • I, too, have a tarlov cyst. Mine is at the bottom of my tailbone. It was explained to me as a pocket of spinal fluid. I asked about draining it, but the doctor said that it would just fill back up. When I asked about surgery he replied that most people have more problems after the surgery than before. For now, I believe I'll just leave mine as is. I'm still recovering from ALIF at L5/S1. I believe that if he thought that it needed to be removed he would have done it while he had me in surgery. Good luck.

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