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Extreme "sinus" like headaches since decompression

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ann50132
ann50132

I need some advice.  I was decompressed on Nov 4th.  The first couple weeks after surgery I felt okay - (maybe because of pain meds).  Been then I developed "lumps" by my incision.  My NS did a CT and said they were CSF pooling and would go away on its own.  Looking back at the timeline, ever since I had these lumps I have had extremely painful sinus like headaches.  It feels like a sinus infection going up into the the front of my head times 1000.  I also have blurry vision once in a while.  My NS referred me to a headache specialist who is treating me for "migraine" headaches.  The meds barely last 3 hours and then the headaches are back again.  The lumps are still there.  I go see my NS the end of the month - what questions should I be asking?  I feel 10 times worse now than before the surgery sad  

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3 Replies

  • htch
    htch ann50132

    Posted

    It sounds like you may have what they call a pseudo meningocele which is a pooling of CSF in the soft tissue where the CSF has leaked from the dura. These can and do resolve by themselves for some people but can also be problematic for others.

    I had quiet a severe one after my decompression in March last year due to very high pressure. I had quiet a severe swelling on my neck in the area of the decompression scar. In the end the CSF actually began to leak through the wound due to the pressure being so high.

    If you are concerned I would ask to see your surgeon again, have they checked your eyes for swelling of the optic nerves/discs ? This is a sign of pressure. Also do your headaches get any worse on lying down as this again is another sign of high pressure.

    Unfortunately it is common to have these complications after this surgery but many go on to have them resolve over time without further intervention, but some do need further treatment to resolve the issues. I had to have a shunt in the end to stop the leak due to the pressure being so high but it did give me immediate relief.

    Hope you get some relief soon, you are still in the early days of recovery

    X

    • ann50132
      ann50132 htch

      Posted

      Thank you so much - do I need to go to an eye dr to check my eyes?  Sometimes I feel like they are going to pop out there is so much pressure.  Thank you again for your response 
    • htch
      htch ann50132

      Posted

      You can go get your eyes tested. Probably best to go to a big specsavers as they usually have the machines that take photos of the backs of your eyes and will be familiar with the condition. If you have pressure they may refer you straight to the eye hospital xx
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