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pseudotumor cerebri entry 8

Jul 30, 2009 - 2 comments








Just a small update - she's under the knife right now.  Left her at the hospital an hour or so ago.
Her father is staying there while I have to work - he'll call as soon as it sounds like she'll be back from recovery.
Just prior to the final checks and before signing the surgical consent form, they explained their plan.  Instead of removing the existing shunt, they are inserting a valve into the line (setting it to medium setting which works for most people)
A little annoyed that they only updated us as she was just about to go into theatre, but one has to assume they know what they are doing.  It doesn't really give you much time to consider it or talk to people that have had this type of alteration done to their LP shunt line.
All I can say is that it better work and not be some kind of half baked short cut that they are taking.  We really need this to function and for her to come home as close as possible to pre hospital, pre headache state.

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by keyman26, Jul 31, 2009
so, just about to head down to the hospital now - the valve they got sent down couldn't be attached to the tubing, so they ended up putting a programmable LP shunt in instead!
So that sounds like a good thing (not sure why they weren't offering it in the first place) but from very preliminary reports, the surgeon has indicated she'll have to stay on her back for up to a couple of weeks and not move about too much until decent scar tissue forms around the new shunt - otherwise things might come apart? This is 2nd hand via the father in law, so I'm hoping he got some facts wrong as this sounds pretty iffy.
I know my wife will be distraught about not getting home early next week. Hopefully once we talk to the surgeon directly, we'll get more details.
Its friday night here and I may not update again til monday - unless I get a few hours at home to update.

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by Mage1970, Aug 02, 2009
Dude hope all is well and all went well - sunday afternoon here , just spent 3 hours on the phone expaining to mum and dad that a diagnosis of PT isn't the end of the world for a 6 year old girl . She'll go under the knife for a cranio-peritoneal in 3 months . I had a programable shunt in 10 years ago and had some minor issues with it - slept on a magnetic underlay and spent a week in hospital - so ask plenty of questions and even if you feel silly asking them at least you'll get answers . good luck to you all  Mike

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