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Thread: Getting that old nervous feeling-again!

  1. #11
    New Community Member
    Join Date
    Jun 2010
    Pacific Northwest

    Default Follow up?

    How are you? If you see this, please post. If someone else knows how this went, please post. Thank you. Wishing you well and hoping you are having a good day.
    Spontaneous spinal. "Crummy dura". Cysts. 3 BPs, 1 glue, 2 surgeries, 4 LPs, 4 CTs & 7 MRIs. Still leaking.

    Call me Delta Airlines, because I can't handle all your extra baggage. - Ned Flanders

  2. #12


    Hi Skycatzmom,

    Thank you so much for checking on me. I had my surgery on Aug. 25th, my 44th birthday. I was so hopeful and so excited for the relief that I just knew was coming. Then, the myelogram revealed that the leak was in a new spot, and that the big cyst or membrane that had formed around the other leaking areas, was not part of this new leak. That meant that there was not enough of a membrane around the new leak to place a shunt. I decided to go ahead with the surgery to try to patch and repair the new leak. The surgery was much harder on me this time and the recovery much slower. I remained hopeful that the surgery had worked until about 6 weeks ago. I was still on the Diamox but felt that change in the headaches that I have felt after all 6 surgeries that I have had before. I weaned off the Diamox and the headaches continued to worsen (along with the other symptoms). It is obvious to me that the leak is back (although that can only be confirmed with another myelogram). Dr. S and I have talked about another treatment option, but truthfully I am so emotionally spent right now that I can't even consider it. I started back to work last week on a PT basis. I am really scared that I won't be able to continue even at PT, but I am the one with the insurance coverage and need to do what I can to hang on to my job. I feel very down and have cried way too many tears. I just knew that my life would be starting to return back to 'normal' by now, and instead, I am just right back where I was-if not worse. I don't really know where I'll go from here, but I know it is going to be a while before I can even consider trying to do any treatment again (it is just so emotionally draining). Thank you for you support, I really do appreciate it.

  3. #13
    Community Member
    Join Date
    Mar 2011


    Oh my gosh, you poor poor thing. I really feel for you, you must be desperate, lonely, and so low. I really hope that you will manage to keep working, sometimes the distraction can help, but if you suffer so much because of it, then what can you do? It seems very unfair that you HAVE to work to get medical care! Surely thats the reason why people cant work! Because they are sick??? All very back to front to me. Mind you in the UK, you just cant seem to get the care full stop and its free here!
    I will be thinking of you

  4. #14


    Oh Cinda ... I am so sorry - I am at a loss of words. Too many stories like yours. I really hope they find a way soon to help spontaneous leakers strengthen their duras!!!
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

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