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. = /

Tuesday, November 1, 2016

Cardiology (Heart) Appt and Echo, Video from PCH (AZ) Hydro Mtng-Dr.Bragg

Saw Cardiology today for follow up. If nothing else stopped at Hobby Lobby on my way home and picked up some more Sunday School crafts. Anyone who knows me, knows I love this store!

Anyways so today's Echo before the Appt with Dr.Earing shows the Mitral valve which was replaced some months ago (last Jan.) and had mild stenosis (narrowing of the newly replaced valve) shortly after has worsened to a moderate narrowing in the new valve now.
Dr.Earing does wonder/seem to think this worsening valve issues is  related to the Heart rate issues  (heart rate at Appt today was apparently 120s-130s I think he said), I am to the point heart rate itself I don't even notice much.
 Do I notice secondary symptoms? For sure but to a certain extent have learned to ignore these to, rest when needed or is just a new abnormally normal I guess?
We've been dealing with high heart rate for quite some time, seeming to be worse since this last Open Heart Surgery so where possible I just ignore it. Definitely wears me out/makes me more tired though I'd say some of that to at the moment is related to shunt stuff (is just weird, both good and sucky).

Dr.Earing did say he thinks perhaps once we repeat the Heart Cath/Ablation Study next month (to slow down heart rate essentially by 'frying' (lack of better word comes to mind) the sinus node with the intention being this in turn slows down heart rate) this should help the heart/valve issues.
I am sure I won't get this completely right but the slower a heart beats the more time there is to get good oxygen through the heart and muscle and properly oxygenate the blood which then goes back out to the body. This also allows the heart more time to rest in a sense in between each heart beat when it is slower so at my faster rates the filling times are less adequate and less properly oxygenated blood gets through the heart, brain and body with each beat while also putting more pressure/work on the heart itself. Not sure if that makes sense but makes sense to me. =)

 The ablation is scheduled for next month (Dec., my choice to wait, needed a break) with the same Anesthesia (airway) dr. whose done all 3 Heart Surgeries and the prior Heart Rhythm Studies/Cath and the prior ablation.
 Same Heart Rhythm dr. (Dr.Kovach)  who did the prior ablation and Heart Caths/Procedures as well. He works with my Cardiologist (same clinic) and they communicate so there to everyone is on the same page and involved in making decisions,.. - Atleast this will be an easier procedures than the Open Heart Surgeries and only an overnight stay.
General Article on Ablation

Otherwise the weird symptoms from this last of the numerous surgeries/procedures during the shunt infection stay some wks ago is sllooooowwwwllllyyyyyyy improving but biggest things seem to be 1. sleeping upright as much as possible (I always sleep on my couch but I toss and turn a lot so don't always end up actually sleeping upright).
2. As much as possible which is nearly impossible not irritating low back and causing swelling there as that reallllyyyyy seems to affect the LP Shunt and how it drains or doesn't drain or more aptly how it affects vision. I completely don't get it other than the valve which controls fluid drainage sits right along the LP Shunt now vs before it sat a bit separately (connected of course then to but not sitting within my spine) - is very frustrating and actually being totally honest irritating as I want to be able to function normally....

I don't really understand this other than when area gets irritated that really seems to affect my focusing and memory (this ones harder to explain but ability to quickly/easily recall things I know well or have done repeatedly.. Stinks! This improves to as the day goes on. Needless my phone GPS has gotten some use the past 2 wks and I tend to be thinking 1 thing and say something else only to quickly realize my error. At times it's a bit funny albeit seriously so dumb!
I did get new glasses script as this changed after surgery, distance this time whereas last surgery reading (can't think of right word) vision script changed.
Keep the Eye place in business perhaps?

I did make an Appt with my Neurosurgeon (Dr.Iskandar) as I'd emailed him about the symptoms and he wasn't really sure (we all figured this stuff would settle out once I was a little bit out from all the crazy procedures done especially the brain flush to clear the hematoma(s) (unsure if just 1 or was there 2, doesn't entirely matter) and the crazy irritation that caused.
I don't know, I don't think my body really knows what to do after all these procedures, these new shunt placements (the VPL Shunt valve sits at the back of my head so I avoid laying on that to, seems to create symptoms - easier said than done at times!)  and all that's going on re post infection recovery.
Phoenix Children's / Dr.Bragg / Hydrocehalus Assoc. Mtng -
This was the Hydrocephalus meeting I'd planned to attend last month in AZ, though was unable due to the unexpected/sudden hospitalization due to shunt infections and 4wk stay. - Anyways if you listen or go to 64.47 approx. in the video where Dr.Bragg begins speaking.
She speaks about Hydrocephalus, a bit about my MPS and Hydro at several pts and overall a good talk/talks.

I did go back to Sunday School this past wk, so weird but I'd been there the 1st wk and then was gone wks 2-6 but was GREAT to be back!  It ended up due to the holiday (Halloween/Reformation we had a group class so I group taught with a friend and her class (1st/2nd, I have 3rd/4th) which actually was good as my brain was so off that morning but overall really, really nice to be back!
Will update sometime soon - Thanks for stopping by,