He has been so tired, so hurting, so wiped out. Sleeps all day. Cries when he wakes up. Photosensitive. Doesn't like to walk or move around.
He gets the spinal taps / intrathecal chemo twice per week. It was finally seeming to work (his CSF count went down to 1 this morning).
However, they also did a head CT today, and compared it to several weeks ago.
On today's picture (the left one below) you can see the dark areas on the left edge of the picture.
Those are pushing against his brain and compressing the middle part (the ventricles).
|There should normally be a "butterfly shaped dark area in the middle
and it is compressed together because of the pressure from the left edge (dark areas).
|Normal "Butterfly" shaped
Ventricular cavities (circled in red)
They do not think
it looks like bleeding (not acute subdural hematoma) (new blood would be bright).
So it's either extra CSF fluid, infection, or pockets of leukemia.
We need to check that out - there is much discussion about how and how soon. We hate to poke into his head because of risks of bleeding (low platelets bad coagulation),
and risk of infection (no white cells yet - marrow still empty five weeks out from 2-CDA chemo).
The neurospecialists think it is a Chronic Subdural Hygroma
- possibly caused by either:
#1) Negative CSF pressure
from sequential traumatic spinal taps creating a separation space for the collection of CSF fluid - the pressure differences accumulating over time.
#2) Small hematoma(s?)
in the past, followed by water osmosis to the protein rich pocket of old blood. Osmotic pressure could have continued to grow the hygroma.
#3) An infection
with the same osmotic water accumulation (not pus because he has no white cells yet)
#4) Leukemia cells
(but then why not 22 days ago when his CNS leukemia was worse?)
Since that subdural area [a virtual area between the
dura (brain cover)
and the brain itself] does not communicate very well (isn't connected) with the ventricals of the brain
consequentially either of the last two options (infection/leukemia) may not have shown up in the bi-weekly spinal taps.
Another interesting question is whether the pressure sequestered ("squeezed off") an area with leukemia from the normal CSF fluid flow,
and was both not getting treated with the bi-weekly chemo, and also giving us an unacurately lower CSF nucleated cell count.
I think this is possible because for three taps (5th, 8th, 11th) the count hovered (4,5,4)
and then started dropping.
That seemed to coincide with his clinical symptoms increasing.
I was so busy focusing on the CNS counts, I hadn't been paying attention to some of the potential side-effects
of the many lumbar punctures.
Things like CSF-HypoVolemia
, IntraCranial Hypotension
, Tonsilliar Herniation
Even the type of needle used makes a difference - either a cutting (Quincke) needle or a Atraumatic (Sprotte) needle
It seems research touts the benefits (less headaches
, and leakage
) of using the latter.
Will have to check on that a bit more.
Tomorrow morning he is going in for surgery (drilling a hole into his head)
. That will give them time to prepare - give him blood and platelets first.
Also then there will be a full team at hand because of his delicate condition.
If they observe pressure that will help them understand more about these fluid pockets.
Then they can also send it in for cytometry
to find out if there is cancer present.
They will leave a drain in his head for at least 24 hours, that way the brain can re-expand without pushing against positive fluid pressure.
He will be in intensive care afterwards.
That brings back memories