Friday, December 11, 2015

Odds and Ends; nothing big. Shunts; Good, Frustrating, good.

Nothing big to update; we've made adjustments to the VPL Shunt which have made my feeling so off center (thinking?) better - not perfect but sure better a and that IS nice! Vision is still off BUT Better than it was.. before it was just kind of a mess in general - I could see and do things but lol, it was not normal by any measure. Now it just seem blurry with trying to read (which is not my normal either in reality, I feel like the LP Shunt is the better primary shunt) and I feel like the 2 together does make it much better as the day goes on but damn these mornings SUCK! Atleast today (Fri) was the best morning so far though, yippee!
Anyways I've made the Eye appt with local Optometrist and still need to set up with my Neuro-Opthalm. (I don't have a regular Opthalmologist). Who knows with this crap!?
I can remember Dr.Bragg saying something along the lines last year with the 2 shunts how they work better together but we know together the 2 don't really add up to 2 shunts and I think/knew she was absolutely right then and I know she's right still as headaches get so much better as the day goes on but still no where near as good as say when we have an External Drain (EVD, an external shunt, drains spinal fluid outside the body) in place... nor as good as when we do shunt taps and drain fluid off. Still i'll take this and who knows maybe each day will con't to get a little better or maybe it is that I need stronger glasses rx and if so i'll take that to. Whatever helps, little steps! Now sure beats a week ago or almost 2 wks ago!
I asked Dr.Bragg 2 questions, both why she did she think the pressure headaches would be so much worse in the morning and then get better as the day went on, almost to a normal as the day goes on? And the other if she knew, on the off chance if a a R sided pleural chest tube would have to be placed how would this work (My Cardiologist and Heart Surgeon told Dr.Bragg they didn't feel one would be need to be but would have a plan in place in case a R sided chest tube where) and anyways with this upcoming 3rd OHS did she know what the Team would do with the shunt catheter in the mean time on the off chance a R sided chest tube is needed?
So far the consensus seems is they feel the chance of needing a chest tube on the R side is small but if a R sided chest tube is needed the VPL Shunt would have to be I think per Dr.Bragg externalized and at some point probably connected with my LP Shunt in the peritoneum. Then later Dr.Bragg could re-internalize in pleural space. Hopefully won't be needed!
Hopefully this just wont be needed but I like to know details so was curious what she thought and given so many chest tubes where needed with both prior open heart surgeries (albeit different valve replaced) I am more or less just curious what she thought/thinks.
I'll be sure and ask my Heart Surgeon and Cardiologist and Anesthesiologist their thoughts to on this prior to the Heart surgery in Jan. - from Dr.E's (my Cardiologist) note it seems he thinks similarly, that it would be externalized and down the road Dr.Bragg's Team could put it back in the pleural space.
As far as why are headaches worse in the morning and get better as the day goes on Dr.Bragg said Spinal Fluid pressure is highest in the mornings and decreases as the day goes on so this likely explains why I feel worse in the mornings and improve as the day goes on. Frustrating!!! Perhaps most frustrating of all is the mixed up/feeling like I can't comprehend things normally though this is much improved, (seriously compared to a wk ago it is hugely improved). Vision is a little improved (other than writing is still a little off), reading is crap (I can enlarge my phone thankfully) but can't really read a book which bites big time, I love reading!

I am very grateful we have the 2nd shunt back in place but have to admit this past 2 wks has been a little frustrating with trying to sort out how to best get on top of these symptoms! It was even almost like when we had the shunts turned higher that the shunts drained better but this caused the weirdness/off center/off my normal thinking feeling-like I couldn't organize my thoughts or quite think normally. Yet we have them set at the bottom which drains the most and man the difference in that 1st hour yesterday (Weds) was like HALLELUJIA but the shunts don't seem to drain as well (Or really I think it's more they seem to drain, probably vents collapse, pressure builds, drains, ventricles collapse, pressure builds-forcing ventricles open repeatedly so not continuous headache (pressure) relief. CRAZY is what these shunts are! I said to Dr.Bragg I don't know how she stays sane in her business having her work and often (atleast in my case due to the MPS complexity) fail, having to re-do it over and over and yet she's so sane and nice and down to earth! <--- Hopefully each day does con't to improve as it has =)
In any case as I've said before I am grateful she doesn't give up and she does view my care and issues as a Team effort-us working together to make it better!
On a different note, I can't remember if I wrote about it in the last post but the Anesthesia (airway) dr who has done all my prior open heart surgeries (OHS's) and both prior heart procedures in the past 2+ yrs sent me a message and she is working to try and coord. her schedule so she can be at either the appt with Dr.Mitchell (Jan 5th I believe it is off hand) or the pre-op Appt, which is the day before this 3rd OHS (Jan 20th I believe).
She like I feels we should have in place a better post-op management plan for after this 3rd heart surgery to include 1. how long they'll leave intubated/sedated (both for airway and for recovery) and for post op recovery-pain mngmt control. I am glad she is thinking about these things! I do not really remember a lot about the 1st initial days with the 1st two (especially the 1st one given I was sedated for the initial 3 days and intubated) but apparently it was rough so I think her having been there and thinking this through plus putting her voice in to this is a good thing!
Dr.Kovach, my Heart Rhythm dr, (is in the same clinic as Dr.Earing, my Cardiologist) sent a message and said he would stop by sometime after the OHS while in-pt but was curious to see if HR would slow down with this surgery and with taking stress off the heart having to work so hard. He said his stopping the Ivabradine or not would depend on how heart rate did with this surgery. So it appears he'll stay involved and atleast there is a plan there to.
Next wk is a busy week with appts and other things going on, f/up appts and things at Church so hopefully this weather stays nice - I LOVE it!
Thanks for stopping by,

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