Tuesday, May 22, 2018

back home

Today my neurosurgeon helped us understand that when he operated on me three months ago it was the first time that he had seen a dura that was imperceptibly weeping CSF fluid over a wide area. He gave it his best shot and packed it full of foam and glue, but didn't know if it would work. As Katie reported, the good news is that yesterday's MRI showed that my brain is sitting higher in my skull than before (and not causing venous congestion, bending of the optic nerve, etc, like it was before the surgery), so apparently the surgery worked well enough to stop at least some of the leaking CSF.  However, the fact that I continue to have some symptoms means that I am probably either continuing to leak some from that same site or possibly I have permanent damage from the 1.5 year brain sag.  The bad news that we learned today is that they really can't do anything about either of those.  He made it clear that my dura is such a thin and tenuous membrane that it doesn't make sense to open up those three inches behind my neck ever again; it would definitely just make things worse. Since they think it is most likely that all of my dura is thin, I may be more susceptible to leaks for the rest of my life.  So they told me that I can't do jarring or straining activity like running, jumping, or powerlifting.  But apparently quite a few people (although still a tiny percentage of the population) have thin spinal cord membranes, and many of them don't develop leaks.  So the docs are hopeful that if I am careful and I live within my new limits I can live an enjoyable life.  And that has been my experience the last year or so.  The nortriptyline medicine really helps keep the dizziness at bay.  If I plan my meetings to be staggered, I can lay down in between and still be productive on my phone while I stretch my neck and my head equilibrates.  When I push myself too hard I sometimes get a headache, but medicine usually can help it be manageable.  As Katie mentioned, I have still been able to attend many of my kids' activities.  In other words, my condition isn't horrible or painful, it just can be annoying because it requires a lot of life adjustments.  And it sounds like those adjustments will most likely need to be life long.  So, even though we were sad to learn there was no magic bullet, we are happy to be able to get real answers from really experienced guys and be able to start to accept our lot in life with its new boundaries.  And God has been giving us joy and blessings in this place just as he has in past places. Mayo may have run out of fixes for me but God hasn't run out of faithfulness to me.  This whole ordeal has brought more maturity and love to our home in a number of ways, and it continues to force all of us to rely on God more.  All of this makes me think of Psalm 16 - "LORD, you have assigned me my lot; The boundary lines have fallen for me in pleasant places; Surely I have a delightful inheritance. ...Therefore my heart is glad and my tongue rejoices ...You have made known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand." (Ps 16:5-11, abridged)   You all blow me away with your care and prayers. Especially cause laying down a lot isn't nearly as bad as some of things many of you are going through, and yet you continue to shine and persevere and show compassion to me and others.  God is so gracious and awesome to help carry us through everything we all face.  Love you all, Casey

2 comments:

  1. Thinking of you and your family and saying prayers 💛

    ReplyDelete
  2. "Mayo may have run out of fixes for me but God hasn't run out of faithfulness to me"

    Gotta love His faithfulness!

    ReplyDelete

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