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
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