Thursday, November 1, 2012

Revision #16, 2nd Valve removal, Wait and Watch; test(s), Ideas.

Today has been kind of  long day but hopefully tomrrow i'll feel even some better. Pretty much we wait and see if the CSF stabilizes now between the 2 shunts. I was talking to them about (as has  been a past fear too) that I do worry about this being on-going for the rest of my life and not feeling good so much of the time w small parts of the day I feel better. Thankfully Emily, Sue (NPs), Lisa (Nurse) and Dr.Bragg are so easy to talk to  albeit I dislike really talkin to anyone about how I feel. Atleast they care though.

Dr.Bragg's NP told me one of the things they have done over the past few days is talk to her partner Neurosurgeon and he feels as has been a discussion point in the past that this is related to a compliance issue and will take lots of
 "tinkering" to find the right, best set-up for my body and CSF pressures/flow. We know the 2 shunts compliment each other and have helped keep each shunt from malfunctioning or atleast so often its just a matter of why is it no where near as well as the external drains? Who knows. =/ They did

They are going to do an ultrasound (vs a CT scan which I would have to drink contrast and since I havent been able to keep down alot of fluid (on IV fluids yet) and have no appetite (have eaten very little food) so the ultrasound is the simple means to get imaging although will take a bit longer tomorrow than a CT. This will give them a way to non-invasively look at where the distal ends of the 2 shunts are draining in to and make sure there is no CSF that should be absorbing in to the peritoneum that is just sitting or collecting causing issues. If there is no visible fluid collections it doesnt neccessarily mean there is no absorption issue this would just be the 'easy' way a not well absorbing CSF/shunt would present as. There are apparently multiple ways mal-absorption issues could occur w shunts and drainage problems. I cant quite remember that part of the conversation to well. I think Dr.Bragg said there was a chance they would go back in and explore the stomach but I honestly dont remember this part of the conversation well and am sure we will talk more after the ultrasound.  I am unsure when I will get discharged but suppose it depends on being able to keep down enough fluid and food. I am hoping to get out.

If we did decide to do an externalization of the shunt(s) we would likely take the VP shunt and disconnect it similar to w this valve removal surgery and externalize the shunt at the R upper chest area an then drain from there. I am unsure if we would do an open (free flow vs controlled)  drain (from the shunt) or if we would try different regulated pressures to see what amount of fluid worked best.  If Dr.Bragg did end up moving the distal end of the shunt she said she wouldnt put it in the heart due to the significant cardiac issues and instead would likely drain it in to the chest/pleural area I think she mentioned when we talked earlier today. Initially she had considered maybe the atrial part of the heart could be a drainage point but my Cardiologist was against that due to all the cardiac issues  and already having a Port (access device) in place.  She was more than great about that not being an option to consider.

I should know a little more tomorrow.
Thanks for stopping by,


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