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Thread: Can prolonged lower spinal CSF leaks cause pain to increase in lower back and legs?

  1. #1
    Community Member
    Join Date
    Mar 2011

    Default Can prolonged lower spinal CSF leaks cause pain to increase in lower back and legs?

    My original surgery in 2007 was for a slipped disc L5/S1. When I had my huge fast leaks after the surgeries I suffered terrible constant cramps in my back stomach and legs during the leaks for days and days to the point where I was in such agony I begged them to let me die. This was relieved a lot after each of the repair surgeries.

    During the last few months the pain in my back and legs has increased a lot. I feel like all my nerves are being squeezed in my legs at the front of my thighs and from behind my knees down into my calfs. This is especially worse as the day goes on and the more I am upright. When I go to bed at night I have what I call irritable leg syndrome and really struggle to get to sleep because of it. When I wake up in the morning my legs are fine and so is my back until I get up and start walking about, doing things etc. I have had nerve testing done which came back normal in my legs and arms.

    So I was wondering if this is because of the scar tissue from all the surgeries causing this and if so why is it getting worse recently, or could it be yet another sign of CSF leak? Could the leaking CSF (if there is any) be affecting the nerves? Given my headaches are getting worse too, and the worse my back and legs are the worse my head is I do wonder if it this is related or incidental?

    Hope Im not annoying people by posting too much on here. I find this site, csfleak site and facebook such a source of information, comfort and support, and I dont have any anywhere else. I dont have anyone I can talk to, discuss my fears with, cry with, fight with. I am completely alone with this. My partner is very supportive and always there for me, doing everything all the time, but is completely saturated with all of this and just says he doesnt know what to say any more and reads his book.

  2. #2
    Community Member
    Join Date
    Apr 2011
    London Uk


    Hi Hemi

    I am not sure about the health issues you have here but I understand about being alone in these things esp when no one knows about what is going on.

    I hope you find some answers soon. i have read on FB that you are hopefully getting the answer on MOnday regarding Dr Gray. Keep us informed and I really hope with all my heart that you get the opportunity.

    Lou x

  3. #3

    Default back injury

    I injured my back many years ago and thought nothing of it, I was in agony for a few weeks during that time I started having severe headaches and was in so much pain had to call doctor and was taken into hospital and given a lumbar puncture,after a day or so the headaches eased and I was discharged I was told it was viral meningitis, since then I have always suffered with my back and still have been having the headaches but not so severe thought it was stress, I have noticed that my legs ache and my calf muscles are always tense nearly to the point of having cramp and now I am getting pain in my feet also. I have had a scan many years ago and they said that I have problems with the discs at the base of the spine, I was wondering if this was similar to what you were talking about.

  4. #4


    Hello, im wondering if you ever found out what's going on? my symptoms sound exactly the same...thanks

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