Friday, January 25, 2013

Day 2: Floating ideas, brainstorming.

Let me start this blog by saying I am not absolutely clear I got all of this info sorted correctly but am writing this the best I understood what Dr.Bragg, Emily (Neuro-NP) and I talked about. Alot of info and I had also been reading several longer articles trying to learn more about valves.

We definitely talked about many things today as we usually do when dealing with these shunt issues, she is amazing. I dont know how she doesnt get burned out having to deal with the same issues over and over and doing challenging work and then having to basically fix it again and again (through no fault of hers). I cant imagine how challenging it must be to try and figure out a disorder like MPS and how it affects the mechanics of the spine and brain. Then do it day after day with many disorders- simply amazing! I guess it is why she and others are good at what they do.

One of many things she talkd about after I asked her why she thought we would have had basically good luck w the VP shunt and LP shunt keeping each other from failing after we re-replaced the LP shunt last spring while the VP shunt was still in place and despite not having perfect results (but we where dealing w the shunt infections so it  makes sense) but now having moved the LP shunt to a TPL (thoracic pleural) shunt and having had the VP shunt occlude once already in a couple week span why did she think we where having these issues again now w the new shunt locations? (after both shunts seeming to have worked great for the first week or couple weeks which isnt a long span but it was still the best I had felt in a very long time other than the external drains) and did she think there was a reason with doing this revision on Tues it would have possibly already re-occluded? - (why are we having issues w these new shunt locations essentially when shunts before in LP and VP seemed to atleast support each other from so frequent occlusions?) -   She thought that narrowing in my thoracic spine due to the mucopolysaccharidoses and less CSF in the particular area of the shunt catheter (more space above/below it) and pressures in the chest if I understood Dr.Bragg correctly are lower than pressures in the stomach so this could affect how the Thoracic-Pleural shunt seemed to be working but not working well last week when we tapped it. (is why we also did the chest Xray)  There is less available CSF fluid to drain or pull from? (this is a part I am unsure if I got totally correct). On the other hand pressures in the stomach are higher than pressures in the chest and that could be posing a absorption problem or problems with both of the shunts draining but in different ways or amounts?  I asked Dr.Bragg today if she thought the cont'd non-resolution of the headaches with this revisions could be related to a problem with CSF not 'liking' draining in to the peritoneum (area of the stomach) despite our having one of the shunts draining elsewhere since Dec (before this revision) and she did say they had been talking about/thinking about this as well and was something she was considering depending if we do end up doing the shunt taps in the morning and depending on those results. I dont know if that is the issue or part of the issue where she would consider moving the VP shunt tip as the heart is out and I am unsure if 2 shunts can drain in to a lung space or would the other shunt be drained to the other lung space? If we're lucky I wont have to find out that answer. =? At the same time will worry about it when/if we have to cross that bridge. No sense spending to much time mullting what I cant change one way or another right now.

She mentioned she would like to if I was okay with it re-tap both shunts in the morning because of last weeks  not great TPL shunt tap result (amount) and the collapsed ventricle where the VP shunt is + the catheter tip not being in best ventricle now.  I am fine with if we need to since it will help us get answers one way or another about these issues. (ie is the TPL shunt working and has the VP shunt re-occluded already or is one working or partially working and/or should we move the end of the VP shunt from the stomach.) As usual I hope we dont have to and these shunts would just work but is as always just one day at a time....

A few other things she talked about was should we take out this new 2nd valve as it could be ( causing not enough CSF to drain (which we knew all along could happen) when I am up-right now as the '0' setting when I lay down is pretty much what we need. I dont lay down much bc of the heart/breathing) but it still had made a difference before the shunt occluded and stopped working early last week and after the shunts where replaced in Dec. At that point if I did wake up w a H/A it pretty much went away w/in 10-15mins and was soooo mild so a matter of finding a middle point of little or no headache but keeping the ventricle open and the shunt un-occluded it seems. On the other hand the pressure setting when I am up-right that ICP (intracranial pressure/pressure inside the skull) has to hit is pretty high (for me) at 15  and may be to high before it will drain any CSF so thus could be why I am having the headaches still, I am unsure why the ventricles would have collapsed though. It is all a lot to learn and always something new and this new set up is even more complicated seeming atleast to me (in how it is supposed to work).  Dr.Bragg always explains it well and uses these funny analogies to explain all this shunt and drainage/headache stuff in easy to understand terms but I dont always remember it anywhere near as well as she tells it. =)

At the very least atleast I am not throwing up and just headaches, some nausea and vision affected - the throwing up is the roughest part so is nice to have a reprieve from it as that is typically the hardest to control. The rest is no fun but atleast made somewhat better typically by being upright.

I'll update after I talk to Dr.Bragg tomorrow if there is something to update on ie if we do tap the shunts or if feeling better or whatever.
Thanks for stopping by,


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