Shunt take ??

Ive been apprehensive since last weeks appt with my neurosurgeon but tried to block it out as much as possible over the weekend but when feeling well I wanted to have a good weekend which I did. Thanks to taking zofran pre-emtively in the morning and right away at night I only threw up early sunday morning (awoke out of a dead sleep and thanikfully have a garbage can next to my bed). Otherwise days have been pretty good with just occassional milder headaches and nights so-so.

So anyways Dr.Bragg (my neurolsurgeon) called while I was on my way home from Children's Hospital (Milw) with some information and questions. There's not even a slight chance i'll remember everything we talked about as I think we talked for well over a 1/4 of my drive and covered many things but also kind of went over the same things multiple times trying to iron the possibilities out. The jist is that they are wanting to do ICP monitoring again with the VP shunt in place to see what pressures are and then probably tie off the VP shunt (a relatively simple knot) and watch to see what pressures are. If it goes 25-30's (intracranial pressure) then it's a matter of figuring out the shunt still but otherwise possibilities of potential other options several of which she somewhat touched on like 3rd ventriculostomy (hole created so ventricles communicate I think) this I dont quite get how would work in MPS given the storage material continously but will cross that bridge if needed. Other things she mentioned was having Opthalmology come by to see if they can weight in (I get vision affected with the headaches but papiledema (pressure showing up on the optic nerve) doesnt show up often in MPS pts. She said it's possible it is more of an obstruction problem and wondered if we had done any imaging with dye although im not sure now if she meant of the brain to see if there is a place that is causing the problem or if she meant through the shunt to see if the dye gets through.  She and her colleagues wondered if they may be able to find a non-shunt way to manage the pressure issues so we will see. She talked about 2 areas especially in MPS that present different in MPS and could they isolate a specific area that pressure/problem is coming from and find a solution to it. She didnt know but apparently dealt with this in MPS pts while she trained in Utah, I kind of figured she had to have saw atleast a couple MPS pts there (Primary Childrens Hospital). I had asked her if she thought the location of my 2nd valve could be affecting the shunt (sits at my collarbone was originally below breast) and she said when she was training they where able to demonstrate if 2 valves where put next to each other the back pressures where not regulated at all compared to when the 2 valves are spaced further apart so it may be a possibility she isnt sure.

  I dislike very much not knowing solid plans and dont feel great about this (not that I dont trust her) and hate that once again have to re-schedule and re-try to figure out everything I have going on. I wish this damned shunt would just work and I wish it would just be done with so I could do other things. I feel bad for Dr.Bragg because clearly it has to suck when you struggle to help a patient and answers arent clear but I also just pray and hope and wish we figure something out soon. Please just say a prayer this monitor shows something and we can move on with an solution quickly. In the mean time tonight ive emailed one of the drs who created the Enzyme replacement drug I receive each week as he is as familiar with MPS as anyone I know to see if he had any take on all of this. I have seen a few other MPS I pts have similar issues and suddenly they get to a place their shunts just work well so thought maybe this dr would have an idea.

Dr.Bragg's nurse is working out the details of all this so if ive forgotten anything will edit this and will update when I know more.
Thanks,

Erica