Sorry for not update on recent Appts and frankly life (although I guess I don't often share much about my day to day-fairly boring (but good to me) life! Sometimes I feel like wrting but then I don't actually know what to write about or to be more apt (is that the right word?!) I know what's on my mind but to tired to really be able to put it in to words! That has been the case for sure the past few wks.
Cardiology / Heart Rhythm
I guess i'll start with the Cardiology and Peds Neurosurgery Appts I had last wk. and see about the rest.
Cardiology was ok, nothing to much as we didn't do an Echo this time (repeat in June), the next heart monitor will be in June as well with joint f/up Appt with both Dr.Kovach and Dr.Earing, basically to con't to monitor the newest valve (some (moderate) stenosis (narrowing) in the new valve but nothing that my Team seems to alarmed about. We'll also con't to monitor the post heart ablation rhythm and brief run of heart block episode(s).
Dr.Earing along (apparently) with Dr.Kovach decided to stop the Digoxin, this having something to do with the episode(s) of short heart block on the heart monitor and if I understand right Digoxin may have some or could have some affect on that area/potential issue? Non-the-less, although I'd love to
I wont complain about stopping it (I take numerous heart meds so one less is awesome!). =) Even with getting off the Ivabradine last month and the Digoxin now I still take numerous other meds for heart (Lisinopril, 2 different meds for fluid (Lasix, Spironolactone) to get fluid off/keep fluid off heart and lungs and baby aspirin +Lovenox injection (blood thinner). At some point we'll likely re-add the Coumadin, go back to just doing Lovenox before surgeries/procedures.
Needless the 3rd Open Heart Surgery was a year ago, Jan 21. Seems hard to believe at times!
Spinal fluid / Shunts
Our biggest issue here is the lack of spinal fluid in my spinal canal due to the 2 shunts (1 in spinal canal, 1 in my brain), the lack of CSF b/c of these shunts and secondary (per my Nrsgn) severe Arachnoiditis (having to do with scarring I guess) which affects CSF flow and (I guess if I have it right) the spinal fluid (CSF) being less there is less of a cushion to the spine/spinal cord. This scar tissue in turn causes inflammation if I understand correctly which causes more scar tissue.
Lack of Spinal fluid within the Spinal canal due to the shunts and Spinal fluid leak (CSF leaking out due to CSF leak in low back) and aggravated by the severe scarring/narrowing (Arachnoiditis per Dr.Iskandar) could be the cause of irritation to the nerves this causing radiating pain (and maybe cause of the severe low back pain when standing?).
Needless I still feel the valve and reservoir sitting on my low back (under the skin, located low back) is not helping irritation or inflammation at all.
It's always worst when I am on my feet and is minimal discomfort when I am sitting back either very straight posture (but then very difficult mid-shoulders, a radiating pain).
I could KICK myself for not sticking to our original agreement to put the valve and reservoir to sit on my side, along the LP Shunt again! I HATE this! And the leg/low back pain literally takes my breathe away quite often.
Non-the-less will try to update soon,
Thanks for stopping by,
Erica
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