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.
<BR>
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.
<BR>
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!
<BR>
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.
<BR>
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.
<BR>
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.
<BR>
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).
<BR>
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)?
<BR>
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.
<BR>
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.
<BR>
Just my opinion though!
<BR>
Thanks for stopping by - below is something I wrote the other day, re my last post. Sorry for the length of this.
<BR>
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.
<BR>
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!).
<BR>
I wrote that and still wonder those same sentiments!
<br>
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.
<BR>
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?
<BR>
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.
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.
<BR>
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!
