Monday, September 25, 2017

Neuro Stroke Appt; Cleared for Surgery (benefits outweight risks)

Neuro Stroke Appt today went well, I will admit I was a little nervous although not bc of the actual appt or anything they might say (what could they say?) but b/c surgery tomorrow hinged on approval from the Neuro-stroke Team.
The 2 Providers I saw (2 NPs, I really liked them) seemed to have actually done quite a bit of homework on my background, what my MPS diagnosis is and how that might play in to the TIA episode.  When in the ER/In-pt overnight the actual Neuro-Stroke MD had seen me and the 1 NP works with him + the other I believe she said was training. Anyways they feel the episode likely was a TIA which is what the ER at BD and then at UW had felt as well. This NP just said with TIA there is no real way they can "prove" this but based on symptoms that is what they all feel it was and not a stroke or something else. Likely cause from my heart valves / cardiac risk factors.
As a side note (and I read this to when learning more about these 2 things after the episode) did you know a TIA is an episode with stroke like symptoms but temporary/transient in nature - so usually or likely in my case caused by a blood clot or something from heart valves breaking off I believe she said and goes to the brain + temporarily blocks blood flow. A stroke simply (or not simply) means it's an episode that causes same symptoms but permanent damage evident on imaging (usually MRIs).

 Ultimately after much exams on their part and all the different Neuro tests they do, talking, sharing information, their asking a million questions (not a bad thing) they said they had been in touch with my Neurosurgeon as he had questions if surgery would be ok/safe. The consensus is that in a elective surgery they'd want to wait 9mo (wow! having something to do with risks and healing and may have been something else I'm forgetting) but b/c mine isn't really an elective surgery and benefits to this surgery out weight the risks they gave their "okay" and surgery can proceed. I do not know if there will have to be extra monitoring during surgery but am just glad surgery can go fwd!

The LP Shunt revision is scheduled for 10:00 arrival (pre-op check in and all that jazz) then 12:00 surgery if all runs on time. My infusion Nurse (ah I LOVE her!!!) accessed my Port today after I was done at UW so that is good to go for tmrw. I think I am packed (I bring my own comfy shirts and pants) and hopefully get a little sleep tonight - I haven't gotten much the last few nights and I don't generally sleep very good in hospitals! And to hopefully good Nurses, a bunch of my favorites took clinic jobs (I see them just won't see them on the floor and Traci, my favorite will come up to visit b/c she's kinda AWESOME! =D)
Will try to update in next day or so and facebook for sure.

Thanks for stopping by,


Saturday, September 23, 2017

Various Appts., LP Shunt revision (Tues) 9/26

A few days till the LP Shunt revision (exploration) surgery which is set for Tues. God willing... Am praying the Neuro-Stroke Provider on Monday signs off for surgery (I don't see why they wouldn't but I suppose i'll be a bit nervous right up till I hear from that Providers mouth that she sees no problem with it!).
After the Neuro Appt i'll call my Infusion center (a few blocks away so pretty close to UW Hospital), my primary infusion Nurse was fine accessing my Port for Tues (so much easier going in with my Port accessed then trying to get the Pre-op Team or Access Team down to do it! the morning of surgery).

Otherwise a few wks ago, actually while in CA yet I had tripped/fallen (I am not the most graceful) while going up the shuttle steps to go to the Airport and bruised my R knee though at the time was uncomfortable but certainly not the worst thing I've done. That for whatever reason over the 3 or 4 wks since has only seemed to get more sore and uncomfortable and the bruising/slight swelling hasn't gone away, This has has made walking a slight annoyance!
I finally went to the local Urgent care yesterday as my Primary dr is out on maternity leave and no one else in her office could see me till next wk (which would have been fine except the surgery is Tues and the appt they offered was Thurs).
Per Urgent Care doc and Xrays he thinks it's likely just bruising, try to rest ( easier said than done!) and get it rechecked in a few days if it's still so uncomfortable. They wrapped it in an ace banadage and said to keep that on other than showering so hopefully will improve in 3-5days!?!?! Would be nice!

 Neuro Opthalmology

This past wk I seen Neuro-Opthalmology (having to do with the eyes and brain) which I suppose shouldn't really be that big a surprise but the visual field testing was pretty bad, some pretty significant issues with it. I hate these tests almost like I hate no other test (that's saying something!!!)! Mostly I hate the visual field test b/c of how you have to sit, leaning kind of fwd, neck and upper back leaning fwd (super hard, I don't have normal motion in my neck and my low to mid-back is fiercely unconfortable in almost any position these days due to the LP shunt. which is the shunt being looked at next wk).
Anyways so I apparently bombed this visual field test (my Opthalmol. showed a copy of the test vs the last ones I did a few yrs ago (I am supposed to see this dr. yearly but kept cancelling the past few yrs); even I could see the stark difference. It was pretty obvious.
Given we are having shunt issues I asked my Eye doc if that couldn't be the cause for the changes and so she agreed and instead of moving on to other tests to look more in to this that she'd first want to do she asked me to let her know in a month or so when I am healed from next wks surgery and she'll want to repeat the test before deciding if we'll need to do further investigating (testing) in to this.

 Hopefully it is in fact an issue that heals after the shunt issues get fixed. I talked to a few of my docs and they seem to think with time it could very well straighten out. Not high on my list of things to be to concerned about.
Dr.Bragg (my former Nrsgn, though she stays involved) just said I needed to mention it to Dr.Iskandar and when I emailed him he said he would look at the results. I suppose maybe bc we are only looking at the 1 shunt and say that is working and we aren't planning to look at the VPL Shunt (plan is to just explore the LP Shunt and spine on Tues) maybe there is an issue with the VPL causing these vision changes? I'm not sure and really don't know. Maybe just pressure in general can cause the changes. Either way isn't affecting anything much at the moment that I can tell anyways.

 Pre-op (for surgery) Appt:
Separate from this I had pre-op last wk which was with a Provider I'd never met (mine is out on maternity leave through next month, I've always known she's great but there are so many small ways I have missed her in regards to my care these past couple months!) - anyways the Internal Med dr. I saw seemed to have familiarized herself with my case and the whole appt went really smooth. I had made this for an hour and a 1/2 time frame before my Infusion (made for a long day, was in another part of Madison) but went well and quick! My Neuro-Endocrine dr has sent their pre/post surgery stress dosing recommendations for surgery and Cardiology's lonox/blood thinner recommendations are also on file so wasn't to hard.
Cardiology did their Echo last wk as well, as well as the Lovenox (injection blood thinner) labs and I've not heard anything re the Echo result but did see the result on MyChart and not unexpectedly (given wasn't more than 4wks before that or so we'd just done this test!) results looked pretty well the same.
The mechanical aortic valve just mild leaking or narrowing and the mechanical mitral valve mild-to-moderate narrowing. The lovenox level was within normal (range it should be for this med) level as well.
Otherwise I feel like i'm forgetting something but I really am not sure what.
Will update when there is something to update.
Thanks for stopping by,


Saturday, September 9, 2017

Hurry, hurry and wait... Communication.. Few updates

What  a week?!?

Re the TIA (Mini Stroke) issue thankfully no one seems to overly worried other than the ER folks. I will say for about the 9-hundreth time I really missed Dr.Bragg this wk (I was able to ask her advice which I appreciated) as she'd have been really up on what had went on and was going on + would make sure the things recommended actually got done in a timely manner.
This said the Humira study 2nd (enrollment) trip is on hold for now till I see the Neurology-Stroke clinic Provider in a couple wks  (25th) and hopefully they will sign off on my going back to normal flying.

Cardiology which was the other "Urgent" thing I needed to get done and get an Echo done they never bothered it seems to pass that info to my Cardiology Team and  Cardiology initially wasn't going to do an Echo at all (I really don't care 1 way or another) but the Neurology clinic literally called no less than 3 times in a several day period asking if I had gotten it done yet and stating they where going to order it to be done at UW if it was not ordered by my Team.
I passed all these messages along to the Cardiology Nurse (who I really like) and she in turn talked to my Cardiologist + he ordered an Echo  + wants a lab test to check dosing levels for the Lovenox (Enoxaperin) injection blood thinner I take. I'll do both of those mid-next wk (I'm sure I could have done these sooner but next wk is what worked for my schedule and seems no rush). They'll let me know the result. I just asked if they could  include a note or something stating if they felt things where fine from the heart aspect so Neurology would be happy. Trying to cross all my T's and dot all I's before the Neurology-stroke Appt!!

In the mean time I seen Neurosurgery at AFCH (It was a UW kind of week I guess) and Dr.Iskandar and I are going ahead with the shunt surgery (LP Shunt). He'll explore my lumbar (low back) and if an acceptable, less scar filled area is available he'll move the catheter down (shunt catheter tunnels up to my thoracic spine now). If this is all to scar filled (my back is a mess and already had several decompressions/laminectomy surgeries for shunts) then  he said he would at least try moving the catheter a down a small bit in my mid-back. I am praying for low back placement!!!! We know this is an area I do well with, with the LP Shunt. Unfortunately he's not willing to move the valve/reservoir (valve controls how  much Spinal fluid or CSF  drains, the reservoir is used for tapping the shunt to check function or infections/how well the shunt is working) but atleast it is something and hopefully should help some!!!
                     Lumbar Peritoneal Shunt placement (same general placement as mine)
This surgery is scheduled for Sept 26th, the Neurology Appt is the 25th and pre-op is this next Tues before I go to my weekly Infusion.  I am sure praying Neurology signs off and if anything gives suggestions how to prevent another TIA or works with my Cardiology Team (this is where I really miss Dr.Bragg and even my Neuro-Endocrine dr. said it the other day, Dr.Bragg would pick up the phone and talk to these Providers).

Otherwise I have a few trips for various reasons in Oct and early Nov., for the Sangamo talk/invite and to AZ (Hydro walk) so saying prayers things are sorted by then and my Team can do what seems rather impossible these days and work together to sort this stuff!
  It's not all that reassuring when 1 dr., has no clue you even where in their hospital ER, their Residents re-programmed your shunts and yet they had no idea till I asked their opinion about the whole issue that the TIA had even occurred!? Kind of the same with Cardiology - I'm glad if he's not concerned but ya know there's not much that worries me and that night I WAS worried! Anyone who knows me even remotely well knows my biggest fear has always been losing ability to drive and losing being independent!

Will update when there's something to update.
Thanks for stopping by,


PS On a side note Sunday School starts tmrw, almost seems hard to belive!  I am praying my body just plays nice and this yr I  make it more than just the 1st wk (2 wks instead, lol?) before being out potentially a week or few wks. Last year I was there the 1st day and then gone for the next 4wks or so due to surgeries but remember being so uncomfortable (was my choice to go anyways, a good friend of mine will always pick up my class if I am sick/out). I think I'm looking fwd to this starting again!

Monday, September 4, 2017

Brains are a fickle thing.. Brain, Heart.. transient attack?

I got back from CA (Humira study stuff) Fri night, unpacked, settled and back in my norm pretty quickly. I was by my Parents Sat for supper and a few hours after that, after I'd been home a little while I had a sudden onset of some really unusual symptoms which at first I didn't think to much of.
The initial symptoms quickly turned in to numbness  that quickly spread to 1 entire side of my body, thinking was really weird, trying to type a message to my Dad and then to call him (then trying to type in his # on my phone to actually call) took I bet 10mins for something that's 2nd nature. It was WEIRD!!!

Once I finally got my Dad on the phone I just asked if he'd come take me to the ER (which anyone who knows me even slightly well knows I HATE ERs). We went to the ER in BD after I'd called the on-call Adult Congenital Cardiologist who advised getting to an ER and getting brain imaging done + keep them updated.
 In the interim I had posted something on fb as well about the symptoms and a few of my drs., saw the message + where private messaging me to see what was going on and to make sure I was in fact going to the ER and that the ER was going to do imaging.

While waiting for my Dad I managed to 1/2 walk, 1/2  drag myself from my living room to my bedroom (my Apt is not huge but this was quite the process)  to take an early dose of the baby aspirin I take every morning and my Lovenox (blood thinner) dose early + pack a few things just in case.

Once we had gotten to the local ER they did a CT Scan, labs and then we sat there for what felt like eons  (6hrs I believe, the Ambulance guys where a but taken aback by this long delay actually in the transfer though maybe there was a reason I don't really know) till the ER made the decision to transfer  and then eventually decided to transfer to UW.
      UW ER did more lab work, an Brain and other MRI with and without contrast and few other basic tests but the basic thinking is I probably had a transient ischemic attack  (basically a stroke that passes I guess) and since I am already on blood thinners (Lovenox) and Baby Aspirin they would let me go home. The Neurology folks at UW gave me the name of a Neurology Provider I need to see this wk at UWwho fups on all ER stroke Pts and I am  to also have my Cardiology Team do an Echo + go from there.
   Fun, fun, FUN!?!? (Not so much though glad the symptoms and issue passed, even I was a bit worried!!!!)
I left a message for my Cardiology Team (it's Labor day today) and will call the Neurology office tomorrow. I do see my Peds Neurosurgery Provider later this wk so a lot to follow up on but thankfully most things where just transient and did not last!!!!
If I had to guess given Dr.Earing (Cardiology) mentioned concerns he had about my just being on the Lovenox and not Coumadin and he had if I remember right felt there was a higher risk for blood clots I'd guess he'd opt to add back the (Coumadin)  but also keep the Lovenox injections for some time (or atleast till we got the shunt stuff hopefully sorted).

Neurosurgery Resident - the shunts are a pain in the arsh to re-program and adter a bit of re-trying he not only listened (a good thing!!) he got them!     
Stay tuned I guess?
Prayers are always appreciated! I fully believe it is because of God this episode and other things I have experienced or been through have not been worse. - I am grateful to know my God's forgiveness and love!