
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
Thinking of you and your family and saying prayers 💛
ReplyDelete"Mayo may have run out of fixes for me but God hasn't run out of faithfulness to me"
ReplyDeleteGotta love His faithfulness!