Originally Posted by pogo

DD, 9, just had her fifth revision last week. This one has had some rocky/weird issues - massive headache when she woke but seemed to clear after throwing up an hour later (hope just an obstruction), episodes of confusion after slowly cleared away (could have been seizure related but not sure) and residual vomiting did last a while. Still working on nausea. Worried about an obstruction occurring and not clearing. Nurses were very spooked with vomiting (not even once an hour), they called it a lot. I must be too used to vomiting, seemed less concerning than the confusion. They didn't do a post op CT but if confusion ever happens again I may ask for one as bleeding is a bigger concern.

So recovery is rockier than prior revisions but at least the 100% headache is mostly gone! So so very worth pushing for a revision. Seem to be back to minor over draining for now. The surgeon is hopeful this revision may be a sturdy enough system as the previous programmable was not operating quite right given the pressures they measured during surgery. Before this the surgeon repeatedly pointed out that a revsion may only temporarily help with headache. Limited options just suck. Seriously need better ways for surgeons to objectively record what's going on because it sure is tough to get them to change their minds when they think they know (based on no concrete evidence). Grr. Still, wish everyone had a surgeon at least as good as ours. Not looking forward to when DD transitions from pediatric surgeons.