"Hope your coping OK with all the unknowns " - I can't remember who said this to me, a friend I'd guess no doubt but clearly whoever it was knows me well!
I truly think losing Providers and especially ones so key to my care like Dr.Bragg wouldn't be quite so hard if there where a better plan (transition plan) in place but I am utterly at a loss on this.
I can work w the MPS over the summer to mange the headaches atleast, so that while not ideal (by that I just mean not wanting to need them) is something to help.
I can't remember for sure but am fairly certain at last wks last Appt Dr.Bragg made a comment she'd not yet had time to write a summary of what we've done/tried as far as the shunts and the past 5yrs. I have to call her (former I guess now) Secretary really something else so will ask her about this, try to figure this out.
I would assume since she (Dr.Bragg ) is on her way to AZ now (they left Sun. from what she told me later on) she won't have a chance to write 1 up and honestly if not this stresses me out far more than perhaps it should.
BUT given my history w Neurosurgeons and having shitty luck w that Specialty prior to my finding /being referred to Dr.Bragg I AM stressed about this and stressed how to get the new guy aware of my complex history w/out 1.
Perhaps it seems stupid /silly to others but I worry w/out a summary of my history and what we've done this new doc will (figuratively) run as fast as he can (ie become 1 of the types of Nrsgns that says they'll take your case but then basically doesn't ) or 2. Try to reinvent an already well invented (many things and approaches tried) wheel care wise..
I AM stressing about this and probably will till I know there's something in place
I really don't have the slightes clue but trying to figure out what I need to do if there ends up not being one. If I need to put something on paper? How exactly I'm not sure if I do? Perhaps a time line what's been done?
Do I just wait and ask him to call Dr.Bragg in AZ when I 1st meet him in Aug/Sept? - I DON'T KNOW!!!
Or do I ask 1 of the NPs to try and help me on this? I'm sure I'm not the only 1 who stresses about this and w our complex MPS 1, my history, the amount of tings we tried and surgeries well all I can say is I'm human and I cope well everything MPS by having detailed plans or this in place as much as possible - by knowing (when possible ) what's our next option/approach /way to handle this.
A few friends in my MPS Community have said to just have him read my chart which fair enough but there again w/at or over 40 shunt surgeries in 5yrs that seems an unreasonable request not to mention then get up to speed on overall history?
Perhaps it's a false hope, I don't really know but hoping this new guy when he comes and Dr.Bragg could just talk but I'll be perfectly honest and say I'd feel far better w/ a overview written down and knowing there was something ahead of time!...
Thoughts? ?? - Given symptoms going on that are so much better than by night time (pressure is less, shunts are more equalized/draining) it's possible I'll end up w my own drill before Aug/Sept. - I would swear is the LP Shunt causing issues but neck stiffness, leg-nerve irritation, very intermittent side discomfort (on shunt side only, like last yr actually. This being the very newest thing ), pressure/headaches and other stuff makes me feel at moments like I am going to lose my mind (discomfort)!
This topped w some seeming cardiac stuff is enough to make a person feel like your riding the insanity bus!
Will try to update after (normal) Cardiology and Heart Rhythm Appt fup's on Thurs,
Thanks for stopping by, for rising along my crazy bus - if any thoughts please weight in email or comment...