In January my son (7) was restricted to lying flat 24/7 by a headache which became unbearable when
he was not flat. In February he was diagnosed with high CSF pressure and was immediately given a
ventricular shunt. His headache disappeared, and for about 3 weeks he walked around with the aid
of a frame.
Then he developed a sore neck which again was intolerable when he was not flat. He has lain flat
ever since. Caffeine prescribed by his neurosurgeon had no effect. A subsequent ICP / lumbar
puncture revealed no spine/brain pressure differential, "nothing sinister".
Over the last couple of months, he has also developed "tearing" pains in his wrist/knee/knee/palm/fingers,
one limb at a time, until now he cannot move his limbs without a great deal of pain.
Recently, a non-neurological consultant suggested that these pains could be related to his CSF
pressure.
My son's pre-shunt CSF pressure range was 11-18. At his second ICP, his pressure range was -0.2 to 3,
a lot of the time staying close to 0.
His cognitive function is not affected, he is a bright kid, but basically he is currently just a head, with a
useless body.
Can low CSF pressure over an extended period cause limb pains?
Might he benefit from switching to a programmable shunt?
His shunt valve is a fixed type, rated medium/low. How can the valve be operating correctly
if the pressure is going as low as -0.2?
Appreciate any informed advice!