Neurosurgery and shunts

I really did have the intentions of editing and updating the rest of my last blog post - has been a pretty busy week and so many different projects many actually that require just intermittent input in (a joint APF and Advanced Pain Mngmt Run/Walk. Proclammation APF statement release w/APM, responding to a potential new APFAN volunteer advocate to interview her per my regional managers request, etc) and others that are a little bigger (Peds meeting planning, etc) but also done over time but non the less time consuming! My to-do list has increased for monday (infusions are every monday so I take this to schedule/cancel/set-up those appts that do not need to be taken care of immediately. I also use this to work on anythng insurance related that has to be done as well as generally if any minor cmmunication needs to happen with any particular provider or providers office i'll also add to my 'to-do' and make it my best intentions to delete off as many things as I can every monday. Of course there are so many appt changes and insurance (primarily phamacy benefit more so than medical benefit) issues to deal with particularly when adding new medications or making changes else-where in care that cant wait for monday so everyday ends up being you have to deal with some problem, concern, issue or delay atleast w one benefit or another (I feel blessed to have the 3 insurances I do and wouldnt ever complain but it gets pretty complicated and keeping the benefits coordinated and paperwork sorted is interesting to say the least and often for instance even at the pharmacy where I know the staff well I have to help them sort out which of the benefits is 1st and can be usef for what. Also when something needs to go through my insurance case manager or I just need to ask for her help to clarify something or if she calls me about something these almost always end up being 30-45min+ calls that I seem to do a really good job of missing alot and so then I have to call her back in between whatever I am currently in the middle of to. (not that I mind I just often think people probably wonder why I even bother to carry a cell bc I seem to miss more calls than I answer! - This week for instance I played phone tag no less than 3 times back and forth (so 6 total calls for each the nurse and I) w/my urology drs triage nurse and the same with my Pain mngmt drs secretary the latter being regarding a medication Prior Auth. )  Then because the Urology office PA didnt want to do anythiing till after my urodynamic testing in 1 1/2 weeks I called my PCP's office who I had also played phone tag w several times (purely my fault due to being in meetings and appts) and set up appt with my Primary internal med dr for the bladder issues to see if she might be able to help (that is mon) so I might be able to sleep a little. Also because of the shunt revision on the 9th I had to schedule another pre-op appt w/my PCP's Nurse Practicioner (whom I get along with well and who did the last pre-op). Fit in there the 6 hour day at ERT monday, and the appt and testing with my neurosurgeon thurs and a whee bit busy. Sometimes to it's like someone asks you what you did bc I often think people think I have all this extra free time due to being on disability and they will ask and I dont even know how to answer??  - How do you answer "full time receptionist, secretary, insurance person, patient and advocate and feel pretty terrible alot of the time to in that mix?"  Lol you dont so I just dont answer the question other than generic answer and really think people should try better to get a clue about what patietns w/super chronic head to toe illness go through and/or what the family of kids with disorders like this go through and maybe they'd get that we cant always just drop everything at a moments notice bc our job isnt 9-5 and isnt a paying position either!  Needless this week has been insanely insane!

So anyways about the neurosurgery appt - Dr.Bragg looked at the incisions and thought the swelling on my back (and commented how swollen my valve and reservoir + catheter from lumbar to side incision looked asking if I had noticed this at all as well) and asked how I was feeling both headache wise (last time I saw her I was still feeling great and although I have talked to her nurse Lisa since that last appt) and the leg and bladder symptoms. Once I explained that the headaches had started to come back slightly last weekend and then full on by monday where I slept 3/4's of my infusion (4 hours and due to delays in starting was there 6 but I just never, NEVER sleep at infusions) and only seemed to get worse by monday night she asked a few more things and talked to me about ordering xrays and then doing a shunt tap using the newly minted reservoir she put in last time. The xrays looked ok other than whatever CSF fluid was there and the shunt isnt disconnected at any point so we proceeded to a tap. For this I just layed on the exam table on my side and she cleaned the area where the LP shunt valve and reservoir sit and explained the procedure. (very simple). This reservoir is essentally the very same thing as my Port a Cath for infusions and a dome like device connected to the catheters. She used a needle to insert into the resevoir, draw off some fluid to check color (for infection which was fine) as well as to check flow cosistency as best she can by this metod on the lumbar to side catheters. After that she drew off about 20cc's of CSF to see if this would relieve my headaches and we again discussed what that would mean. She told me I could call her nurse or secretary if I noticed a difference either later that day or on fri and said that if we did do further shunt revision she suspected either the LP shunt cathether sitting in the peritoneal (abdomen ) area was up against something such as intestine blocking the CSF from escaping (these cathethers only have slits at the very tip of the cathether which is a slight downfall and increases obstruction risk) 0r she said we may need to consider a completely different type of valve for the shunt, the one I have right now is a horizontal/vertical meaning flow is controlled both when upright and when laying down to prevent over-drainage and low pressure headaches. By the time I was 1/2 way over to UW from AFCH via the skywalk (couple minute walk) it was literally like someone flipped a light switch and just back to being headache free. I still felt tired and other things but that is always something that takes a few days after pressure is relieved to dissipate and go back to a more normal. I talked to Lisa my drs nurse again thurs after I got home from the UW Peds meeting and we scheduled surgery for teh 9th of august and pre-op physical is this coming fri.

I am also picking up my neice either thurs or fri next week  - she lives about an hour from me so she will be spending 6 days with me and going w/my parents, my older nephew and my sisters family and my second to oldest brothers family to a amusement park we go to every year for the day. While my schedule is pretty full while Lis will be here bc I still have to go to the pre-op appt and ERT on monday following when I pick her up we'll have time to swim and Quinn my older nephew will come stay and just in general have fun together. I know she has been really looking fwd to it as have I so in that respect although I am not looking fwd to dealing with these headaches for another 2 weeks I am glad teh surgery didnt end up being when Lis and I planned for her to come and during our day we go to Bay Beach! My brother who is coming to BB will then thankfully drop Lis of at her house on their way home since they live pretty close by each other and I have the testing at UW the day at bay beach as well as a meeting that thurs also at UW.

Will write more soon - God Bless,
Remember even in the trials we all surely face, God does know our plan and the path he has laid,
Erica

Fluid around back incision 5 or 6 days after the last one - very obviously increased but atleast we know the fix.