Peds Neurosurgery Appt (surgery being scheduled), Cardiology issues, etc.

I apologize ahead of time this update has kind of a lot going on as it's been an on-going post in progress.
I saw my PCP yesterday (see below) and my Peds Neurosurgeon (Dr.Bragg) today.
At today's appt although I can't really explain why (but I've felt like this the last few times) I was fairly nervous and a little uncertain how it would go. Thankfully overall the appt was good and Dr.Bragg seems to have thought about this all some as she is opting to go in and explore the VP Shunt (we rarely have problems for whatever reason with the TPL Shunt) and look at the valve + catheters.

She is technically in and out of the office a lot over the next month or so as she is studying for her boards (certification in neurosurgery) but sees some patients and just said she had no problem fitting me in to her limited OR schedule. She'll talk to her Secretary who will call me with a date and time.
Somewhat ironically this won't be the 1st time I've had surgery with Dr.Bragg when she has technically been on a limited schedule; about 1.5yrs ago she must have been studying for some other test as she wasn't really seeing patients but still did a shunt surgery then to.
In that case it was post a shunt/central nervous system infections and we where putting the 2nd shunt back in.
In any case I am grateful she's willing to look in to it, as much as I really don't want surgery I also hope we can figure this out. If needed we'll change out the valve but stick w the same type (Codman Hakim) as while it's not been perfect it is the best we've found.
I did ask her if she thought it might be the distal (tail end) of the VP Shunt could be malfunctioning or not draining right and she commented in a case like this opening pressure on a shunt tap would typically be increased but then she also commented it is sometimes possible a problem is occurring and the CSF (spinal fluid) finds another place to pool/collect.
If it turned out not to be the VP Shunt (ie one direct exploration it seems or looks to be draining well) then she is concerned the headaches and symptoms are a direct correlation to the increased cardiac-valve changes and issues and is her opinion the only way we'll improve the headaches would be if the mitral valve where also replaced. I think if needed she'll talk to Cardiology after this surgery (but hopefully it will be a semi-simple shunt issue).

Yesterday's appt with my Primary dr (Internal Med) went ok, she had asked me last wk as we exchanged messages via MyChart (patient/provider portal) to make an Appt with her but to also give my Cardiology Team a heads up regarding the newly changing symptoms I was/am experiencing.
I did in fact talk to my Cardiology Nurse on Monday as she calls w the INR (blood thinner) result post-testing (done from ERT Infusion) but I did not mention the changing symptoms. Honestly I am just tired of drs. new symptoms and issues.. It was clear at today's appt my PCP got it but still asked that I call them tmrw (today) after she would send me her lab results later Weds night. She'd really like a new Echo to be done (it's only been about 3 wks since the most recent one) as she is concerned something has changed in the Mitral valve or she wondered if med doses needed to be adjusted.
I did leave a message with my Cardiologists Nurse/the ACHD Nurse (NP) line (same line) so we'll see I guess..
It's not that I don't like this team, just that I feel like a pain in the arsh! I wish I didn't in fact feel like I was cray-cray and could get over the slight anxiety I feel having to repeatedly ask Providers for help?!?
As my PCP said, along the lines of "We all know you have complex issues, while your post-OHS recovery was good it didn't exactly go as expected (referring especially to the sudden mitral valve changes once we got past the un-expected repeat open heart surgery) and we all understand it isn't simple" (or something along that line).
Ironically Dr.Bragg and I where talking about this same 'having to repeatedly ask Providers for help' conundrum and how much I hate it and never get used to it. She to commented along the lines of "I don't know how you/patients do it, I can barely get myself to call a dr. once a year" (funny given she is one). I guess when anyone is reading this i'll likely have some update from Cardiology what they think.
I rarely write about none medical stuff here but this post is going to be one of those exceptions (with some appt/medical updates as above to). Although I don't really know who reads this locally I am going to go out on a limb and write anyways about a situation that has been bothering me..
The past few weeks have been nothing short of stressful as we've been sorting out some (non)-changes with Sunday School and the person who formerly kind of made decisions regarding teaching music, missions planning, group, etc. and decided they didn't want to participate this yr.
This is fine, we all go separate ways at some pt. with anything we are involved in although it really was great w the other person involved, I can't stress enough that they where good at it. Our problems kind of began though when we initially where debating changing up the entire SS curriculum (how it is done week-to-week) and considering trying something new.
I personally really like my class and kids and enjoy the curriculum we have now but was fine if we tried something else. In the end this person decided not to be involved at all so we the rest of us who are teaching and our Pastor who oversees SS had to decide on a few things.
We needed a new music teacher which I was able to reach out to a member of our Church and got this squared away, and a song and practice schedule situated for our Oct 26th service.
Secondly atleast for the 1st few months we decided against doing group SS as none of us really has the time to plan a group lesson for all grades (the former teacher did this last yr. and was good at it). So for now, till the end of Oct. when we have 2 Reformation Group lessons/video wks planned we've stayed with out indiv. teaching.
All should be fine right? We tried to get answers the best way we knew if the other person wanted to be involved and frankly she was good at it but couldn't really get an answer.
Instead now for the past few wks this same person whom I considered a good friend and one of the few people I felt like I could talk to about how I was feeling regarding med. stuff or things in general has not been speaking to me and won't answer phone calls or texts. After trying some I finally gave up and am no longer trying as friendship should be a 2-way street. This whole situation has really upset me though and I wish I understood why the other person suddenly decided we're not talking.
I don't really to be perfectly honest understand why I became the bad person in all this, other than I've learned if someone asks you to take up a cause for them, just don't. One thing I've truly learned is while I already really trust very few people i'll likely trust people I should that much less as it seems people who are un-happy take it out on others. It is all I can guess? This all does make me incredibly sad though.
I am not the type of person who has large circles of people I consider 'very close' as I am kind of a loner, happiest to do my own thing or instead spend time w/family or my nephew but I did enjoy when we'd get dinner or a few of us would hang out. I can totally see why some (clearly not all) people put up a wall and don't bother to get to know many 'friends' though.

On another un-related note, is it really anyones business what amount of time someone spends with their disorder (by that I mean if they become invested in learning about it, find a job within it and it becomes a part of who they are (versus ignoring and denying you have it)?
Sure there are definitely people who use what they have as an excuse to try and get out of things but it bothers me when people or Providers make comments like people are being lazy b/c of what they have (not referring to myself just a conversation I had). I instead think we as either healthy people or as a person who does have chronic health issues should concentrate more on our own feats and less on what someone else does or doesn't do and be grateful we can go on about our lives despite if we do have health issues OR if you are healthy be grateful you are healthy and don't have either health problems or mental health problems!?
In any case, sorry this update is a little bit of many things.
I'll either update this post with the surgery date or a new update once I know and same with what Cardiology says.
Thanks for stopping by,
God Bless,
Erica

Being skeptical vs trusting

I was just paging back through my blog looking for a piece of info and have to be honest I am kind of astonished how much more optimistic I feel like I was 3 or 4 years ago.
It's not that I think I am really, terribly negative now but I don't think I have the same easy going, relatively simple belief in people that I used to. I wish I did!
I think I used to just believe what people (or Providers) told me without much second thought and only after something didn't happen did I (maybe) think about it.. Now I feel like I analyze everything people (friends, providers, some family) say to me and I wish I didn't, I wish I was more of the trusting person I used to be.
I never liked making calls or asking for help but I think I still believed when a Provider said something they meant it (and probably most of the time they do) but now I feel like I constantly have to remind myself they aren't going to purposely try to do something to hurt me or that just b/c I may not get an answer doesn't mean it's about me and instead it's probably about lack of time.
What it really boils down to is I don't want to be that person who needs to be reassured but I do feel like I am less trusting and question what someone really means/says and will they really do it or are they just trying to placate me at that moment.. Here is where I wish I could just trust!?! I know I often forget to ask the right questions at the moment and I sometimes say something in a way that at the time may not come off like I meant it to so I do worry sometimes am I offending Providers, especially those ones I really count on? I hope not but you never know..

Last week Dr.Bragg (Peds Neurosurgeon)asked that I call her Nurse or Secretary this wk and have them remind her to call me regarding her talking to her Codman Rep to see if they (Codman) had any smaller (lower profile, not sure what that means) valves that might suite our needs better... Ironically our having turned down the VP Shunt worked splendidly for the 1st few days and now isn't as bad as it was but it also could be better. It's almost as if we just need a way to simulate what taps do to be able to take off or drain more CSF consistently..
I did leave a message for her Nurse today but also happened to read her last clinic note tonight (I usually request copies for my records but more importantly so I can give them to my Cardiologist and to my Pain Mngmt dr). Anyways in it she talks about the cardiac issues and the affects she wonders if this is having on the headaches (I can't help but have wondered the same over the past few days actually which is odd since I wasn't quite aware that was her thinking!?) Anyways she just mentions in her note if the valve adjustment doesn't/didn't help she would probably talk to my Cardiologist and discuss with him possible need, sooner for cardiac surgery (oh joy) as she wonders if there is some oxygenation issue affecting headaches due to the cardiac issues potentially atleast partially affecting the headaches (so multifactorial)..
She mentioned the possible Cranial vault expansion (bone thinning) in her note but further talked about the cardiac issues and suspecting was this having an impact on our H/A issues. I do think there is some confusion about the degree of the cardiac (mitral) valve stenosis/leaking (it is moderate on the verge of severe) but given high heart rate often I could see how that could potentially affect headaches to some degree.. I also know I am not always the best communicator though some of the info was gleaned from my last blog post; as far as the headaches I don't think the VP shunt isn't working (another comment, part of why stated for tapping the shunt) but to me as in the past I think it's intermittently functioning or partially occluded and thus not draining at full capacity. This boils down really to I don't always convey what I am thinking or trying to say all that well though so isn't that big of a deal. A comment during the tap made last wk was how pressures where within normal though even Dr.Bragg commented that doesn't always mean a lot as my pressures rarely (though occasionally) get quite high when there is intermittent shunt issue but in the note it does mention "normal pressures" during the tap. I admittedly am a little confused by that but overall it seems like from her note she is wanting to try and help be it we con't to look at some shunt approach or be it that the headaches are partially caused by cardiac reasons and will she and my Cardiologist talk. I am hopeful maybe she really will call me sometime this wk (or sometimes in the past she would email whatever info she had which I am ok with to) and we can talk about the valve adjustment helping some and overall a potential plan be it shunt/cardiac/etc..
In reading through past posts while trying to find some info I happened to come across several posts I wrote not long after I began seeing Dr.Bragg and which talked about our early issues with the CSF fluid collections but also how these helped and oh how I wish there wasn't a way to make those happen!?! (not really possible).. It does make me wonder though as much as I am against the bone thinning idea (just seems scary from what many have said) would that be a more permanent means to recreate this fluid pockets/space for CSF? I don't know, maybe I just need to meet w this Plastic Surgeon? It certainly doesn't mean I have to agree to the surgery but gathering info isn't always a bad thing? I am not entirely sure if Dr.Bragg has yet talked to the Surgeon she would want to use.. guess I should ask.. Kind of scary stuff but gathering isn't consenting I guess..

I saw Physical Therapy yesterday which it had been about a mo., which we sometimes space out appts and in this case I had had to reschedule a couple due to other shuffling.
In any case he asked what was going on with the low back/Leg symptom(s) if anything so I filled him in on the great debate going between my PM dr and my Neurosurgeon.
He is normally a fairly conservative Provider ie he tends to try to help his pts avoid a lot of invasive procedures when possible but even he thinks we ought to give the injections a try and see if it either improves/resolves the symptoms or tells us the area of concern may not be what we should be looking at.
I've not heard anything back from my Pain Mngmt dr if she is or is not willing to do the injections now so when I pick up a copy of her most recent office note tmrw i'll ask her Secretary if Dr.B has mentioned anything.
In any case, will update when there is anything new,
We have a SS Teachers mtng tonight and are sorting out some potential changes there with how it is done week-to-week/month.
Thanks for stopping by,
Erica