Monday, April 30, 2012

Lumbar Peritoneal programmable shunt and Dell XPS (a potential valve reset)

So I dont know if I ever wrote about it here but in pre-op fri while we where waiting for my neurosurgeon who was finishing up  a surgery over at the children's hospital (skywalk walk-way) the anesthesiologists and resident where milling about talking to us as was the nurse (same one from the week before and multiple times before that!) and the anesthesiologist commented that the particular valve Dr.Bragg was going to be using was actually on it's way from Chicago and not yet there. It turns out this valve was being delivered by the Medtronic area neurosurgery/shunt rep and he was driving down from his home/office. That all worked out fine and he stayed in during my surgery to help check and set the new Medtronic Strata valve which they opted to set at 1.0 during surgery so we would have some wiggle room to go up or more likely down on the amount of CSF (cerebral spinal fluid) drained.  (sThis is the same valve as my VP shunt but a different programmer is used). Fast fwd the weekend to today, monday and I was having some symptoms yet and especially vision wasnt improving much so after Dr.Bragg stopped by we decided to try going down the last bit to .5. She talked to the Medtronic rep who was around and will be around all week and her NP + those 2 came by with the LP shunt Strata valve programmer. This is done differently in LP shunts but uses the same general device set up.
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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  1. Erica, I am a 35 year old single mom who has been dealing with Pseudotumor Cerebri for 3 1/2 years. On Thursday I had my 4th Spinal tap and on Tuesday I had my umpteenth field eye exam and found out that I'm slowly going blind, which is one of the side affects of this disease. After my spinal tap on Thursday, my Neurosurgeon was finally willing to sit down with me and discuss the peritoneal shunt. He was so against the shunt due to draining so much fluid off the brain, but this is where I thought the "programmable shunt" comes into place. I have one week to make my decision and I'm tired and exhausted of all the medications, spinal taps, and being sick all the time! I can't tolerate the diamox or lasix and any advice you can offer will be greatly appreciated. Please email me if possible. Thanks, Vivy

  2. I had a LP shunt neg flow for over 17 yrs it failed last Sept and it has been replaced by the programmable shunt. I still dont fill that this shunt is set correctly due to I still have double visionn headaches and dizziness. It is also set quite ackwardly in my back, where it pokes out and causes severe pain and spasms. I am in fear because it has reset twice due to Ipad2's and they are everywhere you go now in airports. I cant say I would advise anyone to get this unless the manufacture comes up with some type of sheild or patch to help us and prevent the resets. If you want to travel and it resets who has the little device to fix it if you are away from your medical provider. The manufactor needs to send allof us wh has this device in our backs a list of the providers that have the reset tool for our health saftey and peace of mind. I am angry about this valve reset issue.