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Major spinal surgery CSF leak

Hi, I am a female, aged 58 years old, and I have been suffering for years with chronic back and left leg pain. My last resort was surgery, so on the 25/4/14 I had elective L-S1 decompression, L-S1 posterolateral fixation and L5/S1 posterolateral interbody fusion. I had 2 consultants operate on me, and the operation lasted 8 hours, 3 hours in recovery. After surgery I was in severe excrutiating pain, and had the morphine hand control pump on tap, plus fentinal patch 50 mg. Almost immediately after the op, I was told I had Cerebrospinal fluid (CSF) leakage, I was absolutely devastated and spent the next 12 days flat on my back in bed, I was not allowed to move for 12 days, I was so scared. The drain was withdrawn 1cm every few days to try and stop the leak so it could heal on its own. But 3 days after my major op, they prep me for another operation to rectify the CSF leakage. That night when they informed me of a 2nd op for the following day, I was distraught, beside myself and mentally screwed up. It wasn't until after 3 pm the following afternoon that it was decided not to operate, and to keep me on bed rest to slowly withdraw the drain. What a relief not to have more surgery. The drain removal was apparently successful, and after 19 days the drain was finally removed. I went home the following day, I still had excrutiating pain, I was heavily drugged up with Morphine Oral Solution plus my my fentinal patch. I needed help to even walk a very short distance to the bathroom, plus my stick. Its now 6 weeks on since my surgery and I am still in a lot of pain and walking is very difficult. My left leg often feels like its going to give way. The mornings and at night are my worst time, and I really do suffer with the pain in my left buttock, going right down my left leg, and the pain is like an electric shock. In bed its so hard to reach my sleeping position in the bed, and turning is so painful, I want to scream with the pain. Just to add, I am now oral morphine, pregabalin 150 mg x 2, paracetamol 500 mg every 4 hours, morphine patch. I need help in the night to go to the bathroom. My pain is worse now than before my operation, and I feel so depressed and unable to do anything. I still use my stick and even after a sit down shower, it tires me so much that I have to sleep for 2-3 hours straight after. The doctors have told me to expect this pain after such a major, intrusive spinal operation. I am now at my wits end, has anyone experienced what I am going through and can anyone advise me, or even reassure me about this pain. Thanking you.


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