Quote:
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.
|
Hey Pogo,
Fifth revision? as a parent that must be hard. It's hard enough as the patient, but a parent..... ....I couldn't imagine.
The programmable valves certainly have issues. My initial surgeon insinuated that the changing of the valve was something I had done and was not an issue with the appliance itself. But upon investigating there seems to be a few issues. Every time I've had the device checked by the dr the value has changed and has needed readjustment. I have some awful issues with massive pressure behind my eyes, like they are going to explode from my skull, especially early morning and late at night. Is this valve related? I don't know, the dr's don't see me in the AM nor late PM when I'm symptomatic. They do their scans and say "all good" grrrr? Bloody dr's. I too get VERY annoyed with their know-it-all attitudes. They do not know it all
The headache has almost gone? Already? Well, you have one of the luckiest young ladies around. I'm almost jealous lol I'm 3yrs post shunt revision (6th operation) and I am yet to have a day clear of headaches. The severity and symptoms fluctuate so much I can never tell from onset how intense it may get nor how long it may last. Management can be a %^&*$#@. All I can say is make the most of everyday because tomorrow you never know ( a lesson I learnt the hard way )
Great to hear some good news
Merl1n