Wednesday, March 29, 2017

Exhausting and a little hard.. Shunt stuff. Late Cardiology update

I apparently started writing a update a few wks ago and never finished (see below) so will just tack on to that.
It has been a bit rough of a few wks, not that the past few months have exactly been great but atleast when I had the Spinal Fluid (CSF) leak from my low back (LP) Shunt I had great headache control even though the low back pain/discomfort was pretty intsense any time I was on my feet. That CSF has resolved or healed itself unfortunately now for a few wks and so not only do I still have pretty bad back pain to leg (radiating) pain I now have some pretty freaking (not) awesome headaches that occur mainly at night and certain parts of the day (when pressure is highest). Has stunk really bad!
I have been talking to Dr.Bragg some, getting some advice from her (I miss her so bad, I literally am tearing up just writing this. I miss having a dr. that really listened and thought outside the box. A dr. who realizes my underlying MPS makes my Commun. Hydro just different in some ways than are 'typical' (whatever that is) cases of it. She never gave up and she'd try options like intermittently removing CSF to give relief while we figured things out. Did I say I miss her?

Non-the-less earlier this wk or last wk I emailed my Neurosurgeon (her former Partner) and asked if we could do a shunt tap. check the function of the 2 shunts. I don't know but I do know I feel crummy. Thankfully he responded and agreed we could check the shunts function and see if both are working right.  That is set for next wk. I wish it would be a simple answer! I literally have felt a little depressed some days just from feeling so crappy and frankly uncertainty in answers. I struggled when Dr.Bragg was here, trusting her enough but atleast I knew she wouldn't stop trying to help/figure things out.  Now is just hard.

From a few weeks ago... -  Heart Rhythm Appt
Follow up with Dr.Kovach (Heart Rhythm, CHW) was Thurs an went ok. We opted to add back a low dose (milder) beta blocker, see if this along with the Ivabradine can help calm some of the funny/off heart rhythms. Heart rate itself has averaged (on the past several heart monitors) 80s with some upward spikes in the 100s but overall rate itself is better following the heart ablation in Jan.

Re the beta blocker this was a  joint decision, between Dr.Kovach and myself to trial it. I appreciate my Heart drs. want or ask my input and don't just do something without a joint agreement! I have to admit I may not get this part right or entirely right as I didn't write down any notes and I didn't record the appt (when I do this I delete any recording after I write down any notes) but anyways he mentioned a few options we may have though he's not eager to do/try should we not be able to get these wonky heart rhythm issues to calm with meds. As anyone whose followed this blog knows we haven't exactly had the best of luck with heart meds! That said any further ablations which I genuinely think is unlikely (that we'd try again) but if we did the risk is greater still than the other 2 times. This time especially so b/c we've had a few short episodes of heart block (where the heart stops beating for a brief period or maybe it's that the beats come in a sporadic, inefficient pattern. I honestly can't remember).
   Non-the-less right now it's not on our 'being considered' and I get the feeling is pretty unlikely we'd try again unless things change or got worse.
Will try to update sooner, I genuinely like writing (is easier than talking about how I feel to people and I am glad this blog seems to help so many, who have said as much) but I just don't do it as much when I don't feel good. I guess b/c it's energy I don't really have.

If I sound depressed I promise I am not, just a little discouraged and a little sad and not sleeping to great (I still LOVE my recliner though!) doesn't help.
Thanks for stopping by,


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