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Thread: CSF Leak Possible?

  1. #1

    CSF Leak Possible?

    Hi All,

    I had a Baclofen pump placed April 8 2019. I had not have any issues with a leak immediately post op.

    Over the last month or so, I have been getting really bad headaches to the point that I have been to the ER. They were definitely mad better by caffeine and laying flat

    They are not helped by Tylenol, Advil, Toradal, Maxaran, or Lyrica.

    I have also tried Maxalt but I reacted poorly to it because I am on medications that interact with Maxalt.

    The last time I was in emergency, I was given Dexamethasone and Dilaudid and saw the neurosurgery team the following day.

    I was given both an X-Ray and Ultrasound that confirmed both pump and catheter are fine and referred to Neurology for management of migraines.

    We met with neurology who prescribed Maxalt and sent me on my way (she used the generic name and I didn't realize until trying to fill it that it was Maxalt) When I called to ask for something else, SHE TOLD ME TO GO SEE MY FAMILY DOCTOR?!!!!!

    So, my neurosurgeon is referring me to neurology AGAIN and prescribing Dilaudid for the time being,

    My symptoms include:

    - Severe headaches
    - Face, neck, jaw, and tooth pain
    -Doziness
    - SO MUCH NAUSEA (I had to force myself to buy groceries last week)
    - Running nose
    - Some balance trouble
    - Weird zapping sensations
    - Being super hot or super cold
    - Ears feeling full when I bend and hurting sometimes

    What would cause a leak almost 8 months post? Should I be pushing them to look further for a CSF leak?

  2. #2
    I would suggest contacting the surgeon who did your implant, and proceed with testing. It is possible that your catheter slipped out of place or tore a hole in your dura, causing a CSF leak, but you would need to be evaluated for that specifically. Your symptoms can also be associated with infection, which should be addressed immediately.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  3. #3
    Thanks KLD. I should have clarified that my neurosurgeon is the one who did the initial implant. If the catheter slipped, wouldn't that show on the X-Ray he ordered?

    The neurosurgeon is away until next week. I did manage to swing an appointment with my GP. What should I be asking for?

  4. #4
    An Xray will show that the catheter is still in the same place, but cannot show if you have a dural tear or CSF leak. Did you ask him specifically if this could be the cause of your symptoms? What was his response?

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  5. #5
    I have not seen or spoken to him, it has always been the nurse who programs the pump that I've seen and she doesn't see how I could have a leak this far out from surgery....

  6. #6
    Call the office and insist on being seen by the neurosurgeon. The nurse cannot make a diagnosis of a CSF leak.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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