I saw the new Nsg who was surprisingly nice although maybe this shouldnt be surprisingly since any dr who will take on a pt without knowing much about them and takes on the patient via email bc of an email I sent to the Pain Coord I work with via APFAN and which she then sent to fellow co-workers of hers. Anyways I am appreciative of this APF colleague passing my email on, of her colleagues passing my email on and then of this Nsg accepting me as a patient! Hopefully I dont look back and regret saying this but he seemed to get that MPS is not clear cut and seemed to get that i'm not textbook and nothing about my history has followed any of the "normal" MPS cases but then why be classic right? I did appreciate that he got and acknowledged that lack of papilledema and lack of enlarged ventricles doesnt mean much in MPS I and I told him ive had drs for years noow who still dont really beleive me about that 2 issues and so it was nice that he readily agreed that those issues cant really be used to rule out having hydrocephalus.. He had a couple opinions about what we could do as he isnt 100% certain abour what is going on and we both agree it may just not even be the shunt. 1 was that he is going to talk to his Peds Nsg colleague who is relatively new (as is he but ooh gosh extremely easy going and nice and seemed to know more than some of my drs combined about MPS, not that I have anything against my other drs just that it was nice he seemed to either have seen MPS before or had studied it before I came) but one of his colleagues specialties is Hydro and he wants to see if she concurs with his thoughts. 2 if she agrees he would like to do a shunt study to test if the shunt is flowing to slowly ie is fluid moving through but not adequately or is it partially clogged as some of my drs have thought in the past and which ive always wondered (bc my 2nd revision was due to inadequate shunt intracranial flow) which could explain why my headaches and nausea and occassional (couple times a week or sometimes just once a week) vomiting are occuring (or it could show that the shunt is working fine) and 3 another ICP study over a couple days depending on the shunt study. 4 if we where able to demonstrate it was shunt related he would scrap the LP shunt altogether and put in a VP shunt as he commented how less effective LP shunts are, how much more problematic/failure rate they have and that they are much harder to test than VP shunts. Time will tell.
While I dont see other drs at UW Hospital (all drs are in Milw and a couple in Mn) It turned out to be good since I also met with the Pain Coords (adult and Peds Coords) I work with at this particular hospital and we are going to start working on a state wide meeting for Pediatric pain outreach and awareness meeting for families and for professsionals with the plan to have 1/2 the day for professionals and 1/2 the day for families but w/professionals in attendance. The goal would be for this to occur in about a year or so and just trying to reach out to schools (school nurses in particular) and hospital staff so that people start looking at this issue more (bc kids as you know cant verbalize their pain and parents do not always know what to look for and providers do not always ask).
I had the Pulmonary testing yesterday which took a little over an hour and a 1/2 due to some issues with a few of the tests which we had to repeat quite a few times and 1 test we scrapped after the 2nd time (5 minute test of pure oxygen and a flush to rinse out nitrogen from the lungs while breathing through a tube each time) and tried a different test altogether inside of a sort of sealed box. I see my pulmonary dr (or one of them this particular one is sleep medicine pulmonary) on thurs so will get those results and her opinion of the cardio-pulmonary issues and what she thinks and then will do the sleep study next week. Ironically when finally leaving the pulmonary tests monday after ERT I ran into my other pulmonary dr who is the dr that originally referred me to this dr I will see thurs. I also see Pain mngmt for normal fup and Orthopedics this week. All for now will update soon. Take care Erica
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