Since there are a few on here that have been following my continuing saga I thought I would give you all a little update.
I am shuntless if you recall. Been 5 months and I am miserable. Pretty well back to square one. The doc in Seattle will do the surgery but not until the reoccurring wound in my belly heals and stops re rupturing. I have been seeing a wound specialist and she has watched two (going on three) cycles of the wound healing over and then rupturing out in a new spot. She sent me in for an ultrasound and they clearly see that the wound track from my upper incision tot he lower incision where my shunt tubing was is still open and draining after five months. It also shows what appears to be a calcified “knot” and what “appears” to be a 1.2 cm long piece of shunt tubing at the top scar. I have been saying all along I can feel something up there and it is always where it hurts the most. The general thought is that there is a piece of tubing that got left behind and is festering and then draining down the old would track to the lower scar where it builds up thanks to gravity and finally blows out. I am waiting a call from a general surgeon to schedule a surgery to remove what ever it is that they are seeing in the upper scar area and see if they can get that to finally heal.
In the mean time, this Friday, I am going in for another therapeutic large volume draw lumbar puncture. What that means is they are going to tap me like a beer keg and drain out 20cc of spinal fluid in an effort to give me some temporary relief. I have had two of these therapeutic (as opposed to diagnostic where they are looking for something) lumbar punctures in the past and I am 1 for 2. The first one bought me nearly a month of modest relief. The second one barely gave me two days. Hopefully I can get some relief, especially for my eyes. Then once I get the surgery to fx this wound I can schedule brain surgery #5 (actually I guess I have only had 3 surgeries that have involved my brain. #4 was just in my abdomen).