My brain is worse than I thought…
I saw Dr. Kavi, my neurologist, last week and she showed me
the scan of my brain. It was scary, for
sure. My cerebellum was about 40%
smaller than before and the ventricles were greatly enlarged and pushing out on
my brain. There was some fluid around the
edges of the ventricles. Dr. Kavi told
me that she believes I have something called Normal Pressure Hydrocephaly (NPH)
but to be certain I would have to have a large-bore spinal tap along with
several injections of fluid into my spinal cord. This would take place over 4 days at the
hospital – 2 hours each day. If the
result come back positive for NPH I could have brain surgery to insert shunts
into my brain to drain out the fluid.
Without the shunts, I would deteriorate into something like Alzheimer’s
(no longer aware of who people were or where I was). There would be further worsening of
incontinence and I would lose the ability to pick up my feet easily. However, all of this is voluntary on my part –
the testing and surgery, I mean. The
disease is not voluntary. I either have
it or not. Dr. Kavi insisted it is an
important decision and to go home and think about it, read about, talk about
it, and make a decision in a few weeks (after I finish with my physical therapy
for my neck and back including the intense headaches). It is a heavy decision so I am talking about
it and thinking about it and reading about it.
I cannot have general anesthesia so I would go into it wide awake and
alert. Now, I know the brain itself does
not feel pain, but the bone does and I would feel and hear the drill as it
drills into my skull.
MSA is killing me but I would be alert and know what was
happening as I gradually lost my ability to hear, see, eat, move, etc. – alive in
a body that can feel but cannot connect.
NPH kills, also, but robs one of the ability to connect but maybe you
don’t know you can’t connect. This would
be devastating on my husband.
This is an important decision and I am afraid of making the
wrong decision. I still don’t know which
way I will go with it.
