This topic is of great interest to me. Your experiences, problem, solutions. I welcome it all. I’ve just recently learned what kind of arachnoiditis I have, that it can occur in stages and the specific type. All of this information is new to me, although I’ve had the condition since ‘72. Seems no one wants to talk about it and most gp’s have little experience or knowledge of it.

I have had Adhesive Arachnoiditis for over 10 years now. I had my back fused L4-S1 and during the surgery I suffered a 5cm tear of the dura and a huge leak. About 2 months later the pain in my left buttock and left foot went from some pain to pain so bad I have to lay down. A neurosurgeon had me get a MRI which the Radiologist noted severe clumping of the nerve roots at L5-L5. 6 months later he removed the hardware and did exploratory surgery and noted the nerves were severely clumped. Things stayed the same for a few years and then I could no longer feel my left buttock and inner thigh. I also suffered from ringing in my ears that comes when I am hurting really bad. I also can’t tell I have to piss if I am laying down but as soon as I stand up I have to go immediately and in the last year am starting to wet myself. Bowel movements are also a problem because the nerve damage has affected my sphincter muscles. I trip over things all the time because I have lost the ability to know how high I lift my foot and the falls seem to have made the Arachnoiditis worse. I am 55 and it destroyed my life. I can see myself in a wheelchair sooner or later.