Friday, May 27, 2016

Cardiology Heart Rhythm Study w/Ablation, Neurosurgery - working it out

Today's Cardiology Appt(s) with both Dr.Earing (ACHD Cardiol.) and  Dr.Kovach (Heart Rhythm) went ok, good really I guess. Obviously one never wants to have to go through another surgery/procedure (even though is sedation I technically would consider it more of a procedure) but we are opting to go ahead with the Heart Rhythm (Electrophysiology) Study to try and slow the sinus node-to fast rhythm.
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They'll also measure pressures in the heart/between the lungs and look at the heart overall (at valves, heart muscle, see how things look overall since the MVR-OHS in Jan.
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We'll try to coord. with the same Cardiac Anesthesia dr. whose done all 3 OHS and the prior cardiac procedures for anesthesia which it is nice when you have someone familiar with the airway issues and the endocrine requirements. - My Endocrine Team always sends their recommendations over for any surgery or procedure anyways even if a repeat hospital/Provider but still to not have  to stress/argue over it's requirements is VERY NICE!
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Some Anesthesia drs. get a little weird about that med, even though my Neuro Endocrine dr. stresses it's needed. Like I mentioned it's always  nice to have 1 less thing to have to try to remember/stress why it's needed.
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Potential problems that could occur with this Heart Rhythm Study (is an unusual area, not a area commonly ablated) include:
1. The ablation slows down heart rate to much thus a Pacemaker becomes necessary. Given the 2 programmable shunts that's not ideal but when I'd asked Dr.Bragg about this a month or 2 ago she said it shouldn't affect the actual shunts should 1 end up being needed (unsure how re-programming of either Pacers or the shunts would work) but the bigger problem it seems would be when MRIs are needed. She felt they could just use CT Scans instead though mentioned the radiation and significant doses 1 receives from these.
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Based from a ACHD Mtng I was at tonight the Cardiology folks seem to now potentially have Pacers that can be MRI compatible/their settings just checked after so IF (and hopefully we won't!) a Pacemaker did become required perhaps we'd still be able to do the MRIs (which I am not actually a fan of but for watching MPS spine and bone issues I'd rather suffer through them and catch any issues if they arose before they became to much of an issue! I've had enough spine surgeries, ouch!). So that's just an issue we'll figure out if needed.
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Dr.Earing was asking about the shunts, their current placements (VPL and LP ie Brain to lung-pleural space  and Lumbar (low back) Peritoneal (abdomen essentially). I think sorting if those would be an issue (he didn't say anything he though they would be). He as well as his Nurse where also asking  a ton of questions about Dr.Bragg. It turns out Jane is cousins with Dr.Bragg's former NP (small world).
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I've known for a long time he really seemed to respect her (and he's a tough one to crack as far as (in a sense) signing off his comfort in ones other drs/full trust.
Both where asking why I thought she left,( she has mentioned partial reasons but clearly I'm not going to just say anything to anyone no matter if other drs on my Team and I trust them to) but both wondered  if I thought she really wanted to leave (better opportunity but did she like UW)? 
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 Dr.Earing especially made comment he figured why else would she leave unless she'd probably felt like she'd get better opportunity/more equal at her new position. I doubt any dr. male or female leaves a job they seem to love except if they are getting a better position/opportunity/ probably better pay. I know that's why my former Neurologist-Genetics dr. left UofMn, he used to talk about it frequently (lol you always knew what was on his mind, but those are the type of docs I like, their human) and he took a position in a Pharma Company instead.
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It's almost always the most down to earth, patient friendly/very open docs that leave their jobs vs the ones that are reserved and while perhaps good at their jobs they aren't as 'human' in the sense (atleast to me) as easy to work with.
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Just my opinion though!
 
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Thanks for stopping by - below is something I wrote the other day, re my last post. Sorry for the length of this.
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Erica
 
 
 
In my last post I wrote something about my frustration or anxiety or sadness (not sure offhand, I didn't go back and read the post before writing this, I maybe should have)  ;) but it's related if I remember off hand to the new Nrsgn coming in Aug/Sept and basicallt starting over/how was I going to get him up to speed w/out starting all over.
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Sure there's my entire history in UW's computer system but to expect a new guy that doesn't know me from Adam and knows nothing about me bc no one's been able to get him up to speed to go through that all is pretty unrealistic. So I fell asleep thinking about that, feeling INCREDIBLY frustrated.
 I was feeling uncertain and frustration at not knowing how I'd go in to mtng the new (coming in Aug/Sept.) Nrsgn and how I'd  get him up to date on my (complex) hydrocephalus /shunt and MPS history w/out scaring him off (lol, it did scare me given my prior history w Nrsgns. Even my Cardiology Team when we where talking about this very thing at today's appt said they completely understood as they know my prior history with my shunts and prior Neurosurgeons and my Cardiologist especially seems skeptical/uncertain not entirely sure how to handle this upcoming change. Not an awesome feeling when he's uncertain!).
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I wrote that and still wonder those same sentiments!
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That said I woke up the next day and knew I needed to figure out a plan of sorts so I thought about it some more, called the Peds Neurosurgery Secretary  to verify there really wasn't going to be anything from Dr.Bragg for the new doc and came up w a plan which I have been working out.
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My PCP gave her suggestions (apparently she must read my blog some from comment she made ) and I have been making notes how best to lay this out. I'll do as I originally thought about and make up my own summary of shunt history (surgeries/dates/ what valves we've used) and on a separate sheet write a line by line summary of other surgeries, key (to shunt) surgeries Providers (Endocrine, Cardiology, PCP)  and then run this by the 2 NPs at Dr.Bragg's former ofc. Hopefully to Dr.Bragg can look it over, I'd really, really, REALLLY appreciate if she'd give her official seal of approval to make it official in a sense to the new guy.
Separately but attached i'll include the Endocrine (solu cortef) med directions pre/post surgeries and the Anesthesia drs letter (Dr.Taylor) she'd written after the 1st/2nd OHS a few yrs ago.
In turn I'll run it past the Peds Neurosurgery NPs and we can send to Dr.Bragg to hive her "official" sign off to make it seem official so the new guy reads/uses/believes it?

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If your wondering why this stresses me out its pretty much as simple as my past history w Neurosurgeons has not been great so I want to have something available to the new guy so he knows right off the bat it's a complex situation and 1 that Dr.Bragg put a lot of time in to BUT I was not making symptoms up.
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Wish me luck? Like I've said before i'll be VERY happy when it's 6mo or a year from now and hopefully it all sorted!

Monday, May 23, 2016

Plan to be un-planned; Stressed?!

"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...
Erica

Thursday, May 19, 2016

Hard to lose the good ones.. Wait and pray for relief..

Today was the last appt with Dr.Bragg, ironically apparently I WAS her last Patient she would see in clinic ever here in Madison.
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Myself, Dr.Bragg and her Nurse (Laura) where talking about 25 different things so while I felt sad thankfully the mood was light while in clinic with them. Lol, I only started tearing up on my drive home, thinking about some of the things we talked about, the MRI results (see below) and in general the uncertainty in 1. will the new guy really be good (get that my issues are less than straight fwd) 2. Worrying a little will he have some idea of what Dr.Bragg and I have all done/tried and that no matter who has managed my shunts (1st Nrsgn, Dr.Bragg, etc) it's never been a simple 'we do this and the shunts will last', bc they shunts just don't unfortunately.
Basically as I've said before I've worried more in the past 2.5-3 or so months than I have in probably 32.5yrs prior! =/ It still seems hard to believe Dr.Bragg really isn't going to ever be there again.
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 I often think back to an email from Dr.Bragg the fall after I started seeing her (started seeing her May 5yrs ago around this time) she commented how reading past Neurosurgery records was very similar to the issues we where already dealing with (and would con't to deal with since then). I have been praying so hard the new doc will having a caring bone in him and be an atypical Neurosurgeon - in the sense he listens, isn't a jerk and wants to try and help/work with the rest of my Team. I think she will but I pray also Dr.Bragg really will stay involved.
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I think Dr.Bragg said something today, if I remember right she hadn't had a chance to write a summary of what we've done/tried or my history hydrocephalus wise and while there to I didn't think to ask her about this at the appt (I need time unfortunately to process things at appts, I am not one of those people whose quick on my feet to think of questions related to information I am given). - Anyways so I didn't think to ask her/can't remember if she said she'd have a chance to write this up before she leaves. I am praying she will though, would make me feel a lot better! She leaves Sat. so I'm not sure?
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Maybe I shouldn't given I know the new guy once he comes in Aug/Sept could likely call her in AZ but I AM worried some if I don't have a summary from her/run down on things we've done, little things like how she's best managed pain post top/anesthesia (was always nice she just paid attn. and knew what the Anesthesia people needed to do/use so I rarely worried. If they didn't want to do something she'd step in and make sure it got done) - I worry some starting this all over again even though the Anesthesia people at UW are familiar/have each others notes.
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Frankly I am worried to much probably about stuff I shouldn't but I worry this new guy won't be open to taking on my care (as in really taking it on, wanting to help vs some drs take you on but then do nothing).
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The other thing is though thankfully we didn't need to do/use them often when we did need to use EVDs (external drains, basically, essentially external shunts) the settings I needed to do well with them was very (VERY) low (-5) which is apparently very uncommon and the Nurses and sometimes the Residents in the N-ICU would freak out till Dr.Bragg stepped in and just changed the setting herself.
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She'd let me take off the crappy turban after the 1st night and just use the same turban material fashioned in to a headband of sorts to hold the drains in place and as well let me stand up and 'dump' CSF with the drain open as I drain best that way. Both things that freaked the Nurses out on N-ICU till Dr.Bragg would talk to them. Frankly whether a dr liked it or not I'd do these anyways but is always nicer when a dr realizes your not doing something willy-nilly/careless.
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 I am praying she does do a summary and can includes little details like this (or if it really came down to it and we needed to do a drain at some pt. I'd advocate till I turned blue for both measures). It's a small thing I'm sure to most and odd to worry about but literally things like that make me want to crawl out of my skin (sensory I suppose) and the low drain setting is no different than my shunts both being set to drain at the very bottom. I am just that person who likes things planned ahead I guess, versus waiting till there's a problem then trying to get someone new to understand..
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Quick Brain MRI
We did do the quick brain MRI today, which maybe it's a good thing we did, not that anything came of it but results seem pretty telling to me. - my ventricles almost NEVER change in size and when the shunts are working ideally my ventricles are basically collapsed (which isn't ideal but I feel better). - Today's imaging showed per Dr.Bragg that ventricles where a more regular size (not enlarged but not very narrow) which Dr.Bragg was happy about (something to the affect 'then I won't worry your shunts are going to fail' - which made sense.
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Thinking about this and many other things on the way home though, could this normal ventricle size when my vents are normally slit like and I am having worsening symptoms including the irritated lumbar and mid spine region/nerve symptoms down my leg (like last yr. when that shunt wasn't working ideally for months either, we only found it incidentally) and on LP Shunt tap the region was so, so irritated during (but survivable - just hugely uncomfortable, I just had to keep moving my legs as much as possible and then as the day wore on the region got seemingly worse despite headaches being better). As well as morning nausea/some mornings throwing up be related to vent size being "normal" compared to my usual normal? I don't know but do wonder and wish I'd have thought of this at the time. Honestly I don't blame Dr.Bragg for thinking it's a good thing they where regular size, that's what you want ventricles to be but I do wonder now.
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Perhaps I am nuts and not as if it matters bc I don't have anyone to help me for months now anyways that I could try to convince to investigate the LP Shunt further.. (Dr.Bragg moves this wknd, today was her last clinic day. She did arrange I can work with the clinic NPs over the summer for intermittent symptomatic relief till the new Nrsgn comes) . Ahh shit, right? Fricken shunts, SUCKS that Dr.Bragg is gone! =/ Is all enough to make a person NUTS!

If second guessing where a job I'd rock at it!
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In any case, that's all, if you believe in prayer say a prayer the next few months pass quickly and by some miracle (seriously) someone could figure this shit out - who that might be now I don't know. =/
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Erica
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I see Cardiology and Heart Rhythm docs next week, Botox tomorrow - hopefully the botox can help muscles in spine a little. They seem OVERLY irritated the past couples wks (from shunts?)