1.5 almost 2 wks since the Appt I've not yet heard from the Adult Neurosurgeon I saw last wk though I know they did receive the CT Scan images from CHW Tues last wk. These where uploaded Weds but heaven only knows when they'll be viewed if at all and not sure it really matters as reading this drs note I'm not sure he actually really heard any of the info I told him and wrote down in the new Patient forms (he was even reading back some of the info to me, confirming various things!?!?)
Anyways it's like the clinic note was completely oblivious to anything this Dr and I actually talked about including the headaches having gotten worse over the past few months (unfortunately is my case most often, the symptoms will start out more subtle and gradually get worse over mo's). The intermittent throwing up, H/As that are worse at night and morning but improve as the day goes on the longer I am up. Honestly I read the note and just thought (pardon word choice) WTF?!?! I was both pissed and so frustratedI
I don't even think it's that this Nrsgn I saw isnt a good doc I just (really) think Adult Neurosurgeons deal with Congenital issues so little (?) that my providing the MPS info and emphasizing it apparently went over his head (I don't mean that in a air headed way I guess I mean it like those Adults docs just rarely get our issues with MPS are NOT straight fwd)?
We as Patients get labeled in all kinds of crap ways if we don't show up for Appts or for various other things but drs if they don't communicate? Apparently that's ok?
Adult Neurosurgeons just don't deal with Hydro much much less genetic/complex issues and always obvious.
I can't explain why and is irrational actually but I feel like I'm letting someone down (who I don't know) by even needing to keep asking Dr.Bragg for help and for needing help in general w this with the shunts! Like I said, irrational I know but I still feel it.
This in turn makes me keep thinking about 'why no doctor/doctors in our MPS Community actually study these MPS Hydro (shunt) issues??? It's not thee most common presenting issue nor does it occur in every MPS I/other type of MPS Pt. but it is an issue that's not at all well understood!?!?
Adult Nrsgns don't deal with the rare/complex Congenital issues enough to get its not straight fwd or simple or by any book.