Neurosurgery Incision

Bit of a busy day today and tomorrow looks to be more of the same - as I was headed down to madison west side I pulled off briefly to call my Neurosurgeons nurse (whom I love)  to ask her a question about the shunt/spine surgery incision fluid. While im not all that concerned with the fluid bubble there it is uncomfortable and hasnt gone away in the past 1 1/2 weeks now (and previously atleast would go down over ngiht and increase again throughout the day the first part of the initial week last week. Anyways when I asked her if this could be normal because of having had the spine laminectomy (bone removal, nerve bundle repair)  and also the lumbar portion of the shunt placed in the area she laughed a little and said unfortunately no and  that it was concerning to her.  She said something like "I suspect because you've been around the block your calmer than most of our patients would be" after I mentioned not having wanted to call her sooner or take her time - atleast they are an extremely nice group!
 She asked a few questions about the size both height and length and other questions and then asked if she could call me back. Several hours later as I was headed back home from madison (more on that in a bit) she called back and said she had talked to my neurosurgeons colleague (my neurosurgeon was married the weekend of the 4th and comes back next week) about what was going on this other dr (more on him in a bit to) thought it atleast concerning enough to want me to try and come in tomorrow if I could work it out. I previously had another weekly PT appt and a few other things going on tomorrow afternoon I planned on but just given the nurses desire I said I could make it (at 4pm UW-Hosp) and when I got to where I was headed after my initial meeting on the west side I called and rescheduled for fri with my PT and worked out a few other details for other things.  Now about the dr I am seeing every day when my neurosurgeon would come in and check in the 8 days I was in the hospital she would talk about what various specialists she had talked to thought about the various issues going on post surgery. She talked about this colleague a fair bit in reference to his suggestions and agreeance with her approach to managing the post-op problems. For that part he gets a few bonus points but my reason for hesitating to feel less than positive about tomorrows appt has actually nothing to do with the shunt and spine incision issue and everything to do with a few years rpevious to seeing my current neurosurgeon I saw this other dr and he pretty well labeled me as a drug seeker (even though I was in pain mngmt already by that point and my PM dr and I where  more than happy with progress  we had been making and she was very adept at tailoring my pain treatment plan to not just one but the assortment of pain types (muscle/joint/neuropathic) I was experiencing with very good results. This also was shortly after I finished the initial 5 month or so phase of the Intrathecal trial at UCLA-Harbor in CA and he just couldnt look past the fact that my MRIs did not show typical ventrical enlargement (and yet my neurosurgeon and the adult nsgn I saw this spring BOTH made ir plain as day in their reports that ventircle enlargement and papilledema RARELY occur in MPS pts and IT IS NOT a valid reason to rule out communicating hydrocephalus. He labeled me and belittled my opinions vs actually listening to the knowledge I clearly had about hydro in MPS and would not listen to my symptoms but instead made a split moment decision on what kind of pt I really was. He may be world renowned but that means next to nothing if you cant trust and treat patients effectively who you are seeing just because they do not "look" like a person dealing with chronic illness. We will see how it goes tomorrow but any fup post this appt will 100% be back with my own neurosurgeon! We will see how it goes I guess.

As to why I was in madison in the first place today I actually was at Dean Health Plan my primary insurance provider meeting with my Insur Case Manager which went fine and was nice. It's always curious to put an actual face to a name and voice so that was interesting! :)  The drive down to the west side actually isnt hard at all and while busy (5 lanes) I tend to love that kind of driving vs the in-town stuck behind slow arsh morons who cant get their foot to the pedal to just do the speed limit! Due to my own past speeding tickets I drive within 5-6 miles of the posted speed limit and try to be careful but geez is it reallly, REALLY neccessary to drive 15 in a 25 or 40 in a 55????

More soon,

Erica