Shunt / Heart updates

 

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  

Heart monitor ? LP Shunt ? = Watch and monitor/see

Sorry for the last update being so lack of info - not much to say other than I've been home from the hospital now about a wk and honestly hasn't been horrible but definetly hadn't been great either. I stayed with my Parents up till yesterday so a little less than a week and now back at my Apt. Stitches came out Thurs and I f/up with Dr.Iskandar next Thurs.
Shunt wise what to even say? I talked to Dr.Bragg some to ask her about out prior experience with something somewhat (but not entirely) similar and got a little info from her. I appreciate she's willing to help and I appreciate my Neurosurgeon now has said to both her and I he is glad the 2 of us stay in touch as it helps him.

I don't really know why low back this time is so incredibly painful but then almost as soon as I sit I feel little pain/discomfort. It's not even just like a nerve pain but a full out throbbing, severe pain. Ugh I hope we can figure it out soon (very soon!) or that it just settles!

Heart / Heart Monitor -
I received the Heart monitor  (Zio (Heart) monitor) results from my Heart Rhythm dr. earlier this week and overall seems pretty good results w/a  average heart rate on that 48hr monitor around 86. That's down from 100s so a plus! It's possible we'll still add back a med specific to heart rate (we stopped the very specific Ivabradine after this last repeat-Ablation attempt). It's possible will take a bit of trial and error but something to help overall symptoms which for whatever reason seem like they've kept back up some from the improvements  we had after the 3rd OHS a year ago (albeit not every symptom completely went away after the 3rd OHS/Mitral valve replacement) thus why we tried to manage with meds and get heart rate down after.

There's a potential new issue with heart but something we'll just watch and average heart rate is in the 80s going up to 130s so not to bad compared to prior to Dec's repeat ablation.
For the HR increases he mentioned we could potentially try and beta blocker again (yuck!)  but no matter he'd like to give it a little time before considering restarting the Ivabadine (a heart med more specific to heart rate and heart failure).

The area he had some concern with (an area of heart block) that we've not seen on any prior heart monitors and he's unsure if is related to the ablation we just did or potentially from the last Open Heart surgery a yr. ago. It seems this new area/issue could also be a lesser common link between my MPS, the heart surgeries  (a lesser known or common issue in MPS Pts., doesn't occur from what I think I remember very frequent?) and just hasn't shown up on monitoring before.
None-the-less right now we just watch this "brief heart block" and monitor over time, watch or correlate to any symptoms and may (or may not depending if a consistent issue over time) require a pacemaker.
Heart block from what Dr.Kovach said is a "disruption in the normal communication between the top of your heart and the bottom" so for now we just monitor and watch and hopefully never need a Pacemaker. I know he's talked about it before but I can't even imagine how a Pacemaker, 2 programmable shunts (VPL, LP) work together (I'm sure they can just would be curious when it came to imaging (especially) I guess..

I follow up with my actual Cardiologist (Dr.Earing manages the heart valve and overall heart, Dr.Kovach monitors more the actual heart rhythm) next wk so we'll see what he has to say about it all. Both Heart drs. have kept up on the on-going shunt stuff.

Will try to update after that Appt later this week,
Thanks for stopping by,

Erica

(LP) Shunt Surgery update, Cardiology next wk.

Surgery itself went fine, I don't remember Dr.Iskandar saying anything much out of the ordinary other than the LP Shunt catheter had worked itself completely out of the spinal canal (where Cerebral Spinal Fluid is in the back) and the CSF was leaking only b/c of the hole in the spinal canal from this initial shunt having been put back in. I still have that leak so atleast head wise feel fairly good.

A relative lack of CSF (Cerebral Spinal Fluid, what bathes the spine) is what's causing the nerve pain especially down my R side and a tad difficult of walking. Sorry for lack of a real post!

I already typed up a post so re-doing this am going to make it VERY short. I f/up Thurs this week and site, where the fluid is collecting will be monitored over next few wks I guess.

 

 

I rescheduled Cardiology f/up today so that will be next wk now - following up partially from the Ablation done a few weeks ago.

 

Will update soon, Sorry for lack of information or real post,

Will try to do a real post after Thurs's f/up or after next weeks Cardiology f/up appt.

Thanks for stopping by,

 

Erica