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  1. #1

    Default possible csf leak?

    Hi,

    I've been having weird neurological symptoms for about 6 weeks now, which my neurologist thinks might be from a CSF leak. But it's not a typical presentation, and I wanted to see if other people had similar symptoms.

    Basically, when I'm on my feet, I get alternating feelings of pressure in my head or light-headedness. These feelings are relieved when I'm lying down, and they seem to get worse the longer that I stand up. My pulse and blood pressure seem to be totally normal and aren't much changed by standing up, so the doctor doesn't think its POTS. Because my symptoms have the classical CSF presentation of being relieved by lying down, I'm getting brain and spine MRI's next week to look for a CSF leak. But... reading the information on CSF leaks, I seem to be quite lucky in that I wouldn't call what I have a headache. My head is uncomfortable/distracting when I'm upright, but not in a painful way. Everything I read about CSF leaks says "orthostatic headache." Does anyone have any experience with CSF leaks that don't come with headaches? Or any ideas for alternate diagnoses? Thanks in advance!

    D

  2. #2

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    Hi darpa, my headache is so mild usually that I describe it like you: feelings of pressure in my head. And I feel very weird in my head, too, I can't work. That pressure is clearly in the forehead like a sinus infection. It gets better when I lie down, especially at night, but not usually by a whole lot. It gets worse when I bend over, not right away, but slowly so. The pressure is relieved if I drink an insane amount of liquid, but that doesn't last long. It gets better too with IV saline. Anyways, to answer your question: one interventional radiologist doctor who reluctantly treated me for a csf leak said that my pain ought to be a hell of a lot worse and had to become much worse when upright for him to believe I really had a leak. This was a guy who just saw a lot of leaks in his practice (that involves lots of lumbar punctures for meningitis). Another guy, a leak specialist however did find a leak, but I don't believe that diagnosis (neither did a couple of very experienced neuroradiologists, this was after much additional investigation, none of it without risk). Some of these specialists seem to find leaks in everybody and so have a lot of followers. You can go to private forums to look for yourself. My condition remains essentially undiagnosed. The key point however in my care was to get nerve blocks in various places in my face. Turned out that some of these blocks give short relief, others don't. That points to a facial pain, which was one alternative diagnosis that I ended up liking much better. Not that it's really that useful but it saved me from having my spine opened up in futile attempts to fix my headache. CSF leaks are of course very real for those who have them! Good luck with your care.
    P.

  3. #3

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    Just to update. I had brain and spine MRI's done. The radiologist found engorgement of the venous structures in the cervical spine, which is a common finding for csf leaks. But there was no meningeal enhancement or brain sag, and no focal site of csf leakage could be identified. My neurologist says that a csf leak is her best bet. Trying a blood patch in 2 weeks. We'll see!

  4. #4

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    Darpa- what was your outcome with the blood patch?

  5. #5

    Default

    My neurologist has treated CSF with no headache.
    MRI is notoriously poor at identifying CSF, btw, you may want to ask your neuro to look at better imaging techniques.

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