Still Getting to Know my Head

   I have experienced a lot of head pain lately.  There’s so much to dislike about having had brain surgery but I think the worst of it for me is the pain that radiates along the ridge in my skull where they cut to reach into my brain.  It still all sounds very alien to me…4 years later.  This is why I don’t talk much about the actual surgery.  I’d rather talk about the stroke, the disabilities and the AVM but not the surgery that removed the AVM.

  I have a typical c-shaped scar that starts to the right of the midline of my skull, just behind the hairline and follows back to the crown– where the incision in my skull is deepest and most uneven; it then follows the curve of the side of my skull where it comes up over to the front of my right ear.

The red is kind of the line of my scalp’s scar; the blue is the deepest part of the ridge in my skull.  The original image just happens to show the location of my AVM/bone flap


  And this (yellow star) is where it hurts the most


  I look at that image and I get grossed out.  They taped (pinned?) my scalp to my face.  My scalp was taped to my face.  

  Anyway, that star represents the deepest ridge in my skull.  It hurts the worst.  Just talking about it is making it angry at me. I can usually find a cause for the pain like weather changes or stress but sometimes it will start pulsing like it’s got a little rebellious rave going on in there and I’m the annoyed neighbor hollering to keep the noise down. It can make me dizzy, nauseous, cranky, whiny,  and bitchy. It can blur my vision and even make my left face lose some muscle control, causing me to slur a bit. Sometimes I rub along that ridge and I can feel the scar tissue under my scalp.  I can feel it moving as I push it.  It’s gross but sometimes it feels so good I can’t help but rub it.

    Most times I’ll never find a cause for this pain and sometimes it’s not coming from that ridge.  Every once in a while I become painfully aware of the bone flap (refer to picture above).  It feels swollen which is impossible because bone doesn’t swell.  In fact, bone may become thicker after an injury like a fracture or break but it doesn’t swell; the tissue around it may swell, a joint may swell and sometimes swelling can occur inside a bone (bone marrow edema) but the bone itself cannot swell.  It doesn’t change that it sometimes feels swollen.  On my more paranoid days I might think my brain is swollen and pushing it but I’m still sane enough to know there’s no reason to believe that.

   When I do feel this pressure against my bone flap I like to rub it.  There’s many reasons to like it.  I have very limited feeling on the left side of my body but my right body is on point when it comes to sensations; except for that bone flap.  When it feels swollen and I rub it, it sends tingles throughout the entire right sight of my head– all the places I can feel.  This transfer of sensation is something I can’t explain.   It’s like the opposite of referred pain and is referred pleasure instead.  I can’t feel the relief of the gentle massage exactly where I’m touching it but I feel the tension loosen in the surrounding areas and the image of the ripple effect that is causing is enough to soothe me.

   I also like the way that part of my head feels perfectly round during these times.  I touch it now and it feels the same as always; like just the side of someone’s head that is averagely rounded.  So weird.

   I haven’t figured out what type of temperature or where on the barometer my head is best suited.  Pain comes when it’s cold, hot, humid, dry, rainy, and sunny.  It’s worse on rainy days and my head predicts weather changes my free app on my phone (which goes off local reports) have yet to alert the public to but it really doesn’t seem to matter what type of weather hits.  I do know that when I have a migraine and the weather seems fine but then changes dramatically within minutes, the relief is almost instant.  It reminds me of the first tooth I had pulled. I was in so much pain from this cavity that had every candy logo printed on it that at 16, I didn’t care if I would be one molar short.  I wanted it out.  As the dentist slowly extracted it from my numb face, I felt that pressure from beneath it fade away.  I drooled the rest of that day but it was worth it. Sudden weather changes may stiffen up my left body but I’ll live with that if the pressure in my head gets removed quickly like that.

  I have a decent understanding of my new head and body but it took me 27 years to learn what I knew of my old set.  I guess 4 years isn’t really long enough to really know how to read it as well.

  ♦♦ I just realized I posted this early, I meant to hit save draft…oops…haha.  That’s a perfect example of what living with a brain injury is like!

3 thoughts on “Still Getting to Know my Head

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