Consequences of low CSF pressure

[marba]

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!

[chadry]

You may want to try a different forum I visit. It is for Chiari malformation and some other things. they have some good info there and maybe someone can help. I am sure there are other parents on there that have children with shunts
www.asap.org
Hope you get some help there. Lots of luck to you and your son.
Chadry

[marba]

This was originally posted to the neurology forum, soliciting the input of a neurologist there, but an unseen hand has removed it from that forum and reposted it here. I'm sad not to get a professional reply to my original question, as public information on the web regarding low CSF pressure symptoms and shunt characteristics is hard to come by, and any information would help to evaluate any suggested further investigation of my son.