Thursday, September 8, 2011

Appt date

Just another quick note - Appt with my neurosurgeon and her neurologist (which she works with on her complex shunt pts) is monday at 10:20 - this means missing ERT but honestly I dont care bc would rather meet with them and figure out what we are next step is going to be and sooner we meet the sooner we'll get to overall final plan. My neurosurgeon in her email yesterday did say she likely would also still schedule the EVD and ICP monitr placement + tying off the LP shunt for sometime next week to. Her usual surgery days are tuesday and fri although she usually is at an outreach clinic on weds but sometimes does not have this clinic and so it's possible she would do the admitting then to. She said we would decide this on mon. We'll alos decide with the Neurologist what they both feel is the right ultimate step after this monitor is done ie place a new valve on the LP shunt or keep it tied off and place a VP shunt.

Today I saw my Pain mngmt dr and we talked about a wide variety of things including possibly should I ask my Neurosurgeon does she reccomend any neurologists at UWHC/AFCH who might have experience in my other issues to - ie managing the spine stuff (though I plan to ask nrsgn if she might take charge of watching over the spine stuff or if my PCP would order the MRIs when needed would neurosurgeon read/follow them for us. Some of the other issues my current neurologist manages include the autonomic stuff and overall carpal tunnel/hand -nerve testing. We also talked about the new pain patch I am on and she said she may not keep me on this long term due to the rash and itching she can visibly see even at the site of a patch I took off 5 days ago (still a very visible raised rash). Overal the patch works well so for now we're going to let it and keep using it and see how it goes - I do unfortinately have a rash and hive reactionto pretty near every adhesive be it EKG leads, tegaderm, surgical tape, band-aids, IV tape, etc. when left on for more than a few hours. The reason we want to use the patch for now is it has alot less GI side effects even with my continuing to use MSIR (immediate release). This dr also asked if I might be willing to take one of her newer pts under my wings and help her - a cardiac transplant pain pt who has not yet had transplant and doesnt have alot of support. She is going to talk to this pt further about this.

Next week is the week of our APFAN table at UW so I spoke with the Pain dept coord at UW and my regional manager who is the other one doing this table with me and we all agreed if surgery isnt tues (which I would be a little surprised it was but yet nothing surprises me I suppose) then we will go ahead and do our table tues and if not in-pt by thurs we will also do it then. 

Today I noticed fluid building up a great deal at the lumbar incision although im not sure when it started up ie did it just begin today or did I just not notice it? And this same swelling and fluid is now very backed up to the side valve and reservoir incision and this is very puffy and almost distended plus every so often pinches for whatever reason. The swelling must extend downward bc my L leg is so irritated and has otherwise been fairly good for a while now and overall discomfort at area is there. I saw in the pew at cburch tonight and just even to stand up or sit down or to shift sends some pretty awesome signals along the shunt area. Snce I see my neurosurgeon mon already I figured I might as well not bother them again. Hopefully doesnt get any worse than this as I have both my nephews this weekend (age 5, 9) and very looking fwd to having both of them though im sure i'll be even more wiped out by the end of the weekend.
Will update after monday,


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