Monday, August 28, 2017

Brain, Spine, Heart - the docs have talked, thoughts will be shared... Prayers

I've not yet seen anything from my Peds  (Pediatric, if you wonder why Peds it's b/c this specialty of Neurosurgery tends to deal with the complex, congenital (from birth) disorders more than does the Adult Neurosurgeons) - anyways so I got a msg from Dr.Bragg last wk (my former Nrsgn) and then an email from my current Nrsgn (her former Partner cc'd to Dr.Bragg and to Dr.Guillaume re the Conf call they'd had that day). They want to type up a summary of what they talked about and then email it to me to get my thoughts.
 Dr.Bragg gave me the very briefest of idea what they may be thinking (something to do with my Lumbar (low back) Shunt. She seems optimistic i'll like what they are thinking so while I am trying to not get my hopes up I am most definitely praying and cautiously hopeful? Maybe, just maybe they'll have an idea for something we can do or try to help this shunt or shunts? I am really curious to see what they are thinking... When Dr.Iskandar had emailed to let me know they had talked he said they'd get their summary together this past wknd and send it to me so I am trying to remain hopeful i'll get it in the next day or 2?
I CANT EVEN SAY HOW MUCH I WISH WE'D COME UP WITH SOMETHING TO MOVE THIS SHUNT AND THEN A WAY TO HELP THE 2 DIFFERENT SHUNTS TO KEEP WORKING BETTER?? I can hope!?!?! <---- Sorry to basically yell, not really meaning to but I did purposely put it in all caps. God has a plan, right?

Heart Rhythm - Amiodarone Testing:

I  talked to my Heart Rhythm Drs Team last wk and emailed a bit w/my dr., and have agreed to go ahead with Labs and whatever other testing they want (not sure if there is any other they want 1st as baseline, I did just do an Echo not to many wks ago for Dr.Polgreen's Humira study, the Echo was done locally at my Cardiologists clinic). B/c of my travel to CA this wk (Weds -> Fri) I made the HR Appt 2 wks from now.
I'm really not all that eager to start Amiodarone if in fact we do add it BUT I know if side effects are to bad I can stop it and honestly I need to try something. These extra beats (PVCs) literally occur like 50% of the time. It's CRAZY!
We've tried numerous other meds with little success. I do not at all regret doing the last ablation (Cardiac cath to slow heart rhythm) as that has helped immensely in other ways but would be great if the PVCs never started (I'm not sure they are a  result of the ablation but could be due to scar tissue that occurs).
Regardless we'll figure out at this Appt if this is the route we are going to try. Amiodarone can have a lot of side effects apparently and I already take a fair amount of heart meds and meds to get fluid off so is always a balance.

Separate from the above 2 things, Its scheduled for tmrw and I won't need her for much but I have a new Case Manager assigned at the new (commercial) insurance. - The plan at the moment is the person whose been helping my Genzyme Case Manager and I to get a sole point person assigned at Unity and the new CM + Amy (Genzyme) and myself will talk. We really wanted this so anytime anyone from my Team has questions all of us have 1 person we can talk to whose familiar with my case vs everytime I or someone from my Team would call we'd talk to a different, unfamiliar person. Hopefully this person is as good as my last 2 CM's at DHP!


Old posts, Old thought... Old reminders...
Reading an old post on fb from last year regarding the 1st surgery I had with Dr.Iskandar and communication I had with my PCP nad my Cardiology (Heart) Team going in to that shunt surgery it reminded me (again) how grateful I am for the Team I have!
As I wrote above my Neurosugeons (Dr.Bragg, Dr.Iskandar, Dr.Guillaume (the Peds Neurosurgeon I saw while in Mn a month or so ago) all talked this week, Dr.Bragg gave me a brief overview of what they discussed and thinks i'll be pleased/happy ( I am hoping so, I so have been praying for a solution and to feel better).
Dr.Bragg let me know and then Dr.Iskandar emailed me that they are typing up a summary of the conversation + wouldl email this to me (hopefully) over the wknd for my to review. I pray we really are able to do something to help the LP Shunt (out of the 2 shunts that's always typically been out better working/more reliable of the 2 shunts and least amount of issues). I am saying prayers!!!

In reading the old fb post I was struck though just how much I've missed my Primary dr. over the past 1.5mo's that she's been out on maternity leave. She'll be back in later Oct I believe and I am genuinely happy she gets the time to be with her kids but she makes such a difference for my Team! I try to not take for granted the Team of Providers I have and have been reminded many times really that even with change I am still lucky (blessed) as despite Dr.Bragg leaving WI last year, she stays in touch and involved and though he's never been my actual Neurosurgeon Dr.Guillaume at UofMn has always been willing to answer my questions over the years. The same goes for so many other drs in the MPS Community.

This is long enough already, i'll update soon when I hear from Neurosurgeons and if anything to update from the initial CA visit.
Thanks for stopping by.
 Please say prayers for good options from my Neurosurgeons and soon,


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