Appt for nothing (Adult Nrsgn, No where's fast?).. Back to Peds Neurosurg.. / Cardiac Heart (procedures) 21st.

I think the best way I can describe the last wk since the Appt with the Adult Nrsgn is below, what I'd shared with my family.- FRUSTRATION essentially!

I generally get copies of most medical records so I can give them to drs who wouldn't otherwise receive/see them and this way keeps the more "Core" group of  docs up to date re the various issues or going on.
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!?!?) 

I almost never do it (and after writing down notes delete any recording right away) but I recorded that Appt  and I know we talked about the things that are very different in MPS from more typical Hydrocephalus Pts. He even agreed to some of the pts. yet the dictated note says multiple things about optic nerve size hadn't  changed (optic nerves NEVER change!), ventricle size was stable from the prior (Ventricle size on that 1 as noted by the Radiologist was a small change which on the rare occasion there is any ventricle size change such as prior to the 2nd shunt being re-replaced (put back in) last Nov. was also the slight increase in vent size  if I remember right and IS significant for me!).
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 

Literallywas in tears but tears due to the frustration NOT of anything else!

In reading his note so I could scan in and send to a couple of my Providers I just was a little dumbfounded actually. The note says virtually nothing about the throwing up, but "mild/light occasional headaches" (lol as a friend whose an MPS I Mom said "if daily headaches is "mild and occasional okkaaayy" ) will arrange to have her f/up w Pediatric side".

I know the Peds Neurosurgery Team seemed certain he'd be the one to mange my case long term but I wondered about that and now even that doc said to me and said right in his notes he  was just seeing me since the Peds Nrsgn was out of town but would ultimately send me back to them for mngmt.

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)?

I have been at a complete loss on this and  almost as frustrating is this Dr said to me last wk at the end of the Appt,  "I'll  review the scans and get back to you, we'll come up with a plan" yet I've heard nothing from him?? 

Seriously the least a freaking Doctor can do is call a Patient and let  them know they don't know!?!
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?

I've talked to his Secretary a couple days in a row earlier last wk but finally just gave up.

It's super nice to feel like you belong no where bc neither side apparently wants to manage care?!?!?

I've said it before but  there's a reason even my Cardiologist is at a loss re  replacing Dr.Bragg. 
Adult Neurosurgeons just don't deal with Hydro much much less genetic/complex  issues and always obvious.

 

I appreciate Dr.Bragg is trying to help  and said she'd talk to /send a msg to her former Partner about my case being less than straight fwd but I feel guilty for keeping needing to even ask her for her help! Sucks seriously needing our docs so much!!! I HATE IT MORE THAN I CAN EVEN SAY!

 

All i could seriously think when reading that clinic note is 'seriously, people just throw up for no reason? Vent size changes for no reason?' And optic nerves for pete flipping sakes it's written right in Dr.Bragg's and the other (1st at UW) Nrsgn note that orptic nerves don't change w MPS not to mention this doc and I discussed that very thing in detail! Have you picked up on how frustrating this has been????

In all honesty in addition to being so frustrated and in general tired it literally feels like I'm back where I was  pre-Dr. Bragg (searching, my drs knowing there's an issue but wait, uncertainty, wait). -
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!?!?

 

I know I keep  thinking about the seeming  (apparent from CT Scan) fluid that's building up or not absorbing properly and how symptoms now seems to mimic /mirror other times we've  dealt with 1 shunt working and 1 not or 1 of 2 shunts not working completely  and that I feel (as I have for mo's) the issue seems less like it's the  VPL Shunt but seems more like the LP Shunt isn't  working right and thus any excess fluid in VPL is likely similar to other times where 1 shunt can't keep up with what 2 normally do? Or maybe it is the VPL Shunt but partial issue or who freaking knows but what I do know is I wish to God Dr.Bragg where still here so she could help!

 

In all of this  I feel like  the difference in Peds Neurosurgery  and Adult Neurosurgeons is alot like the  difference in Adult Congenital Cardiologists (what mine is) vs regular Adult Cardiologists.
Adult Nrsgns don't deal with the rare/complex Congenital issues enough to get its not straight fwd or simple or by any book.

I am super frustrated and feel like I am back where I was before I found Dr.Bragg  (except I know she's still trying to help just isn't easy) and that this frankly scares me not knowing will the new guy be willing to take on a complex case/work with my Team????

IAggravating!!! Dr.Bragg said something along the line "they need to listen to you and help you" - don't I know but again appreciative to her.

 

In any case the Cardiac (Heart) Cath Study and Ablation is next week Weds, 21st. I'll stay on my normal dose of Coumadin (range 2.5-3.5) for the study, same Anesthesia Team and is an expected - as long as all goes well - 1 night stay after. 

INR has been all over the board between to low and in-range so either way they aren't stopping the Coumadin for the study.

 

Will update again soon - please say a prayer we can sort something with the shunts soon, otherwise I couldn't get in to see the Peds Nrsgn until August 11. ---> Like I said, it's the never, ever, ending issue!

  If I sound frustrated I am but life also still goes on which isn't a bad thing.

Erica