Saturday, November 12, 2016

Sinus Node Ablation rescheduled. Shunt stuff is.. well it's?

Heart Procedure (Sinus Node Ablation) rescheduled:
We have scheduled the Sinus Node Ablation, to re-try this procedure for Dec., which was my choice and request to wait till then. My Heart Team was happy schedule it out though to give healing time from this recent long in-patient stay and 3 surgeries. 4 in a 4.5wk period (I'd had surgery the wk before being re-admitted, for a small shunt revision).
It's not unusual for the Sinus Node (hearts natural pacemaker) and Sinus Node Ablation to have to be repeated more than once per my Heart Rhythm dr. and from what I'd read previously (I had kind of forgotten that but we did do this procedure in the Cath Lab at Children's a few months ago which worked for a very short while).  Given the strain this overly fast rates are putting on my heart and especially the new Mitral valve we need to get the heart rate down, so we're repeating the procedure though I can't remember if Dr.Kovach said he'd plan to try a perhaps different approach.
The older mechanical aortic valve is holding up better and looked ok (mild stenosis I believe), which is good atleast given that  valve has already been replaced shortly after it was put in the 1st time 3yrs ago).

If you wonder 'why doesn't her team try meds' and have forgotten or missed previous posts re this topic? We have, oh we have and in fact I currently take a multitude of heart meds including a relatively new (approved in the past yr) 'Happy Channel Blocker' (Ivabradine), Digoxin, and Ace Inhibitor (Lisinopril), and 2 meds to get fluid off which like the Ivabradine I take twice a day. Otherwise the blood thinner and Baby Aspirin.

This re-do ablation is is scheduled for Dec. 14th with  the same Cardiac Anesthesia (airway) dr. I've had for all prior heart surgeries and procedures in the past 3yrs.

Shunt - Neurosurgery Stuff
I requested and received copies from the recent Shunt infection/3 wk stay and then the notes from the shunt surgery done the wk prior to this long admission as well. It may sound weird but it's always a little interesting to read these notes and especially from these surgeries as I remember so very little from what was done in the surgeries. It's weird every so often odd little memories or people I met come back to me from that stay as if my mind if slooowwllly filling things in.

So what I learned really is the External drains must have clotted off 2 different times requiring 2 different replacements I guess and then a brain blood clot was found in the actual surgery when the drains where removed and the shunts put back in. Between clearing that clot in the ventricle and the issues found again in my lumbar spine (Arachnoiditis aka significant scarring. I've known we had this scarring issue for many issues and had several surgeries for it but was never entirely clear if it really was Arachnoiditis) which required a lot of scar tissue removal and a laminectomy which is really just a fancy word for spine bone removal. This was/is done to create space for the LP shunt to be put back in. This last surgery was apparently pretty tedious at 7+ hours.

Overall in the 3 or 4 wks I've been out of the hospital now the LP Shunt area is still INCREDIBLY uncomfortable and virtually any movement makes the area swell and painful/uncomfortable which really seems very much to affect that shunt functioning properly.
Brain fuzziness with thinking (hard to explain) and memory are still really off. I keep mis-placing things only to find them in spots I'd normally never put that particular item. Or driving I routinely have to use GPS on my phone even though it's places i've been in some case literally for yrs. It's unnerving and silly and frustrating and the funny (not really funny) thing is it's not all the time but often enough. I firmly believe it has to do with the LP Shunt and the swelling that's occurring and that seeming to affect the shunt functioning consistently.

The extra drainage from a CSF leak in my lumbar spine has been good though slowly seems to be going away which isn't as good bc then morning are back to being more difficult (just takes more to get going and longer to feel better). I think a lot of that CSF leak has to do with how much I do so bad on one hand b/c it makes worse the irritation and swelling and secondary symptoms but then the subsequent CSF leaking helps headaches. Irony!

Perhaps most of all and I may have written about this in the last update is I think the swelling in my lumbar (low back) area where the LP Shunt sits is caused by that shunts valve (which controls how much CSF can drain) being affected and does it intermittently stop draining as swelling and irritation builds up?  I asked the Neurosurgery Nurse this question, (could the swelling/fluid leak affect the shunt function) and she said she thought so. I definitely think it does. I HATE the valve sitting where it does and would love it to be back where it was on my side! Either place the valve sits it is still all connected, before the valve just was funneled under my skin, connected to the shunt catheters but on my side so out of irritations way when I move/function.  Out of the 2 shunts the LP Shunt we rarely had issues with the way it formerly sat.

Apparently with the last of the 3 surgeries this last time, because of the excess or irritating nature of having to clean out the blood clot my Team kept me sedated and intubated for a period of time after to prevent seizures though from what my Dad told me if I remember right I must have not had my hands tied down nor been sedated or not enough as I must have ripped out the breathing tube. I remember none of this and only remember being back on the regular Neurosurg. floor but heaven only knows if that memory is actually right either? I think it is but who knows!

Overall I just HOPE this settles, my Neurosurgeon can help me and will keep listening... He did agree to do imaging to make sure the shunts aren't in funky sitting locations or disconnected or something. I'll also see him in 1.5wks, I've really not wanted to go back in but I cant do this, this just isn't normal and I don't foresee time making the LP Shunt area better due to that shunt valves location/irritating nature.
Will update sometime soon,
Thanks for stopping by,


PS I hope everyone reading this voted. Seems a HUGE part of our Country didn't. = /

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