Monday, April 30, 2012
Lumbar Peritoneal programmable shunt and Dell XPS (a potential valve reset)
They got everything set and positioned over my right flank/side valve and turns out after re-checking it a couple times the programmer in the valve has reset from 1.0 back to 2.0 which means alot less CSF was draining. Thankfully I have the VP to pick up some of that slack and I could tell when the VP shunt would kick in + when it wasnt draining right but still the symptoms clearly ment I wasnt draining enough although I had assumed it was just needing to adjust the amount of CSF down another notch. They confirmed with Dr.Bragg and after gathering some info reset the valve back to the original 1.0 it had been programmed at in surgery fri. They believe it was reset by my laptop as it is known that the IPAD 2 can reset programmable shunt valves and my particular laptop is a heavier-duty, stronger set up that most laptops so likely has a fairly equivolant magnet strenght if held close enough to the valve. They checked my VP shunt and that was still fine at .5 but I could say definitively I had on several occassions since fri had the laptop either right near or on my lap as well as next to my hip especially on Sat when my nephew was here and he was curled up in my hospital bed watching a butterfly documentary with me. Yikes! I will have to not sit on my bed with the laptop balanced in my lap anymore (one of my favorite ways to sit and watch movies or even sometimes sit and type things). I'll adapt. :/ :)
Before we realized the valve had been reset to 2.0 from the 1.0 Dr.Bragg was going to reset it to .5 which is what my VP shunt is set at and she said it was possible at some point we'd maybe have to even consider taking out the valve all together to allow a more 'free flow' CSF dynamic. Hopefully this correct setting or being able to go to .5 will do its trick though!
The Medtronic rep said that my having the VP shunt at its lowest setting and then feeling best at draining 15-18cc's an hour of CSF with the external drain was pretty impressive and a very significant amount of CSF (cerebral spinal fluid) to drain in any one person as someone my size typically produces 20cc's an hour of CSF not the 25cs's I originally have been quoting/writing about.
I commented to Sue (NP) that it was nice to not feel like maybe I was going a little nutty in not getting much relief from the 1.0 setting as it wasnt even set at 1.0 for long it appears and made me feel alot better. :) Even Dr.Bragg said this morning though before all this that she was very confident we would get to a good place given how good the lumbar external drain was and our past experence with the External Ventricular (EVD) drain and improvements we've had. Neither of us feels like we are chasing a pipe dream in other words. (I think thats the right word to use???) and once again I take my praise to God for all he does in often mysterious ways!
Typically Dr.Bragg has always said it takes about 12 hrs to notice improvement with any shunt valve adjustment so by tonight I hope to be feeling really great again!!
Will keep updates soon,
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