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Thread: Previous CSF leak...do I have it again?

  1. #1

    Default Previous CSF leak...do I have it again?

    Hi all. Back in 2009 I had fusion at L4/L5/S1. Shortly after the procedure I started to get chronic headaches. I also had a small gathering at the site of the Op. I had a CSF leak. This was patched and all seemed well. However, over the last year I've had symptoms that I just couldn't explain. I started to feel dizzy, spaced out like I wasn't in the room. I put it down to work and carried on. I was getting a migraine type headache about once a month, then a few times a month. Then the headache to end all headaches, It just wouldn't go. I was treated for anxiety, was told it was migraines. Have been struggling now for about six months with this headache pain. My GP ran out of ideas and medication and felt it best I see a neurologist. My initial consultation left me with a diagnosis of New Daily Persistent Headache (NDPH). I was given nortriptyline and was told that it could take up to three months at 70mg to see any effect, I've not seen any improvement at all. My symptoms have actually worsend and are wide and varied. I have a constant dizziness type of feeling. If I bend down, on my way up its as if somebody is pushing me down again. I have a squishy sound in my left ear, the same feeling as if you have got water in your ear drum. I've had tinnitus.I wake with blocked sinus most mornings. I've lower back pain, from the same area as the fusion. The head pain at best is about 4/5 and at its worst a full 10. It's not classically orthostatic but does get worse throughout the day. I can go about 3/4 days with a headache and then have an absolute corker when I cannot function and spend time in bed. It eases on resting. I believe that its a low pressure leak and not NDPH. I've had two MRI scans with and without contrast on my brain. They found I have some degree of frontal atrophy but nothing that would explain the headaches. I was told that the atrophy was quite normal and that I shouldn't worry. I'm not worried that anything sinister if at fault, but feel that something's are not being considered. No one has mentioned my previous CSF leak, nor have they done a scan, X-ray or any other test other than those on my head. I've been in today to see my GP to explain my frustrations. I've had 6 months off work as I fly for a living and cannot return until I'm pain free and more importantly, medication free,
    Do you think its reasonable for me to ask whether this might be a leak? And if so,what my next course of action should be? I'm really struggling with the pain and no amount of nortriptyline is helping, I've not seen any improvement at all, just a deterioration in pain and symptoms.

    Confused and annoyed. Sorry for the rant!!
    Regards

  2. #2

    Default

    Hi Virgin747,
    I'm new here, not an experienced user. I hope you've had a successful? doctor's visit by now. It seems to me you should bring up CSF leak yourself instead of waiting for the doctor to do so.
    Some doctors haven't really heard about it, or only think it's with lumbar punctures and never anything else.

    If it feels awkward to bring it up, maybe you could have someone along with you whose purpose there is to bust into the conversation with something like, "Wait a minute John/Jane, remember those headaches you had back in 09? Doctor, could it be a CSF leak?" And if there's still no traction, no consideration at all, you could try to change doctors. Or see a different neurologist.

    I hope you're better now.

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