So on my part I know quite well I don't always process information correctly especially when I am tired or not feeling well. Well, needless this admission I haven't been feeling great since Sun (sun night I think) as far as being over-tired, uncomfortable and especially the headaches and related (I think) symptoms. Biggest issue is not only the headaches but then vision (intermittently fuzzy), bladder is kind of whacked this time ie to go even though I have to pee I have to really focus on the effort/strain (vs being something that just occurs) and some other things like my head feeling very heavy/in the clouds and as if there is a giant balloon filling from the inside out or a very tight (all over) head band.
I had wondered where these symptoms due to the VP shunt now being fully functional and thus set at the lowest setting (like pre-surgery) was the shunt draining to much and thus intermittently occluding? Pressure once CSF drains and the catheter collapses (my theory) does pressure then get high enough to force the catheter open again, temporarily relieving symptoms? -
Dr.Bragg did opt to reset the VP Shunt today and turn it up a notch, to drain less which hasn't made a significant difference but does make me wonder if we turned it up 1-2 more notches would that help? I don't know but have thought about asking if she would either feel the reservoir to see 'refill time' or would she tap the shunt and see how quickly the CSF fills? I truly dislike asking her things like this though, not because she cares that I ask (I don't think she does) but because honestly I feel intimidated and I worry enough that I am going to cause her to not want to keep helping. Irrational perhaps on my part but when you feel really crappy rationale isn't always the first thing that plays out..
I did try to get the Aldurazyme sent here, to UW but that is a whole other rigamarole in and of itself with what feels like each Pharmacist telling a different reason why they couldn't get it. Needless to say I was pretty frustrated (add to the list) and I said to the Pharmacist who was originally supposed to have ordered the drug (weekly enzyme) last wk that if this where Chemo or dialysis or some other related drug pts. would never be told "to just skip it" but b/c MPS I works more slowly it's as if it doesn't matter? So frustrating!! The docs in the MPS Community who really know/understand this drug always say pts need to try and get it as consistently as possible and it DOES make an impact missing a week, whether there are significant symptoms noticed when pts miss or not. =/
Thankfully in all this I've only thrown up once and otherwise pain from the various surgical incisions is healing some/not as painful. Ice also helps the back incisions a lot + I sleep with an ice pack on my head (I sleep semi-propped up).
That's pretty much it for now,
Thanks for stopping by,
Erica
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