VPL Shunt put back in, hard recovery, so happy!

**It appears there may be 5 incisions not the 4 I was thinking from last wks surgery, have to ask Dr.Bragg about this. But.. it seems like there are 2 under breast area, 2 along neck/area and 1 at the back of my head, where the proximal (tip) of the shunt goes in. Odd but wow and if so crazy (but grateful they do what's needed to get a good placement, as weird as that probably sounds)...

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Sorry for no update after last weeks surgery - Dr.Bragg worked w the Peds General Surgeon and Anesthesia was able to (apparently if I am remembering right) do the whole surgery with just an LMA to secure airway. That admittedly floored me and made me (at the same time) a little nervous heading back to surgery. I know she was going to use some fixation device during surgery to get a good catheter placement in the ventricle at the back of my skull so maybe that helped and is why they where able to use LMA despite having to (I would think) reposition during.
All seemed to get well in surgery, though this one definitely kicked my butt as far as recovery time after! I have a bit of a difficult time as it is recovering from some of these surgeries but this one was something altogether! Per Dr.Bragg she was super happy with the placement of the catheter in the ventricle and had (If I am remembering right) really good CSF flow this time which I can believe given the noticeable difference in symptoms. =) Initially we reset the 1 shunt to drain at a high #/less CSF and apparently from what Dr.Bragg said today the new shunt must also have been set higher (drain less) than we normally go. Initially this was definitely needed and as this past wk wore on my shunt setting on the new shunt was set back down to the lowest (drains the most). The LP Shunt is apparently still got room to go down on it so that is actually a good thing (that we have room to adjust) to!
In total there are 4 incisions, 2 on my neck, 1 on my upper chest and 1 at the back of my skull where they tunnel the shunt catheter in to the ventricle. Typically we've been able to get a shunt placed with just 3 incisions but Dr.Bragg said my skin was so tough and hard to get the shunt catheter through so they needed to do more indepth access while tunneling the catheter.
Discomfort wise is actually still quite a bit, it is much improved from a week ago, when surgery was but definitely still a degree of soreness I'm not quite used to! I'd say the worst area(s) are where the shunt was tunneled in to pleural space (below R breast) and otherwise the other 3 are improved but variable, ie more discomfort than I would say is my normal (saying a lot). This all said I'd do it again in a heartbear, not even over this surgery pain but if needed this seems to be the best working shunt we've had in a long, long time! I don't feel 100% and have virtually no appetite (not sure I ate any full meals this wk and even fairly minimal snacking) but I do feel better - not 100% but sure is better than leading up to this surgery! We've had 2 shunts before in place and working but this appears to be the best! Yay!!
I actually don't know how long surgery took but however long it was, was totally worth it and even with the discomfort I am sooo, soooo glad we put the 2nd one back in AND that it seems to be working so well!
This surgery definitely played with my mind a bit, what a week (lol) for odd things or instances I would fine myself in but to feel probably 70% better all I can say is ALELUIJAH! (sorry sp)! I told my Mom today if this shunt lasted like this for 6mo I'd celebrate (and I rarely ever (if ever) do the 'maybe this will be the last time we see you/maybe this time is it' thing!
I see Dr.Bragg Thurs next wk so we'll decide then if we're going to adjust the setting on the other shunt then.

Otherwise I see Cardiology for 3mo f/up, 6mo Echo on Tues so hopefully that goes well! Thanks for stopping by,
Erica >

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Surgery Mon., (Last) Tues Shunt tap, Thurs Heart Rhythm (med) f/up, Surgery .... heartache and loss.

Heart Rhythm Appt - Ivabradine f/up
I wrote below (the other day) about the appt with Dr.Bragg to take fluid off; today (Thurs) I saw Dr.Kovach, my Heart Rhythm dr. for Ivabradine f/up re the 1/mo (essentially) med f/up.
He is opting to keep the med dose the same as on the last Holter monitor the average heart rate was down to the 80s from a average heart rate of low 100s (100-110s) and he felt even if we where to lower HR further he wasn't so sure it would help symptoms more as we've not really made a big difference in symptoms I deal with heart related.
After thinking some about the appt given heart rates at virtually all appts I have been at and the few times I've read it on the phone app I have it's still been high 80s to 100s I wonder about upping the Ivabradine to 10mgs maybe during the day and keeping the 7.5mgs at the 2nd (later in the day) dose but will ask this when I f/up with Dr.Earing in 2wks (1st of Dec., Echo and Appt).
Otherwise Dr.Kovach and I talked again about do we add back in say a beta blocker, see if that helps symptoms? Do we give this Ivabradine more time? Or do we just be done with it and say we're going to do take the risk and do a 3rd open heart (OHS) surgery despite the unknowns and risks?
It's never been done 3x's in an MPS pt. but at a certain point your sort of just treading water, getting no where in a sense and so we're trying to weight when is a good time (in a there's never going to be a good time) with my body and the MPS risks?
He planned to talk to Dr.Earing (my Cardiologist) later this afternoon (I saw him late Thurs morning) and then they or we would discuss again after the Appt on the 1st what would be our next step...
I struggle a little bit with this all, I know I appear ok enough to them and that some of my symptoms though they would make more sense to Dr.Earing b/c he's known me for so many years I don't think they are always clear cut to Dr.K.
I am hoping (even though I really do trust Dr.Kovach) that when I see Dr.Earing he will be able to shed a little better light on some of the symptoms I have been having as I think I may have had Dr.Kovach perplexed a little, which I understand I think.
I don't always do a good job painting a picture of just how bad I feel often on top of I look good. This all said I don't think it's that Dr.Kovach in any way doesn't believe me I think he's just being cautious which I am ok with, he kind of wants to see how this shunt surgery goes and he wants to talk to Dr.Earing.
In any case we'll see how the Appt with Dr.Earing and the Echo goes 12/1 and then f/up with Dr.Kovach I guess will be determined based off that appt.
Talking to Dr Bragg today (Tues), both before and while she tapped the LP Shunt (to remove CSF) she asked/commented was surgery rescheduled to Monday for sure now? I think she jsut wanted to make sure it was on the schedule and we have it planned. I know she can see it on her schedule but on her part it's more about verifying we're on the same page I think. In talking about it she said something about finally we'll get you feeling better and I commented something to the effect "less than a wk to surgery; isn't it crazy to actually be looking fwd to this surgery /wanting it to occur?"
She laughed and said something about understanding and my not being the only Patient to ever say as much. Lol, I am pretty sure I said the essential same thing to Dr.Kovach today which he knows this has been in the works for some time. Lol, I think he got it to why I'd be kind of looking fwd to it being done without actually looking fwd to the surgery itself. Still it IS crazy and I know it!!!
Dr.Kovach's Nurse asked me at the Appt today (Thurs) "Do you like being there?" (in the hospital) - I am pretty sure I tried to not bust out laughing but said something to the effect if it weren't for the cleaning/not being able to clean myself (floors especially, broom anyone?) I could perhaps stand it a little better as I do get along w the majority of the Nurses and Staff fine and a few of the Nurses who traditionally ask to be on my 'Care Team' go out of their way to make it all more bearable which does indeed help. Still there's nothing like being at home! I can tolerate it but I am not a fan of hospitals.
I didn't ask Dr.Bragg, honestly, that would seem nosy to me but non-the-less Dr.Bragg said the reason she'd had to cancel and reschedule Thurs's surgery was her Husband's Mom had gotten sick unexpectedly and Weds was the 1st day she and her Husband where able to get flights to CA (where he is from, Dr.Bragg is originally from Chicago suburb).
No matter why she would have to reschedule and as much as I want surgery to just be done I could never be upset at her for needing to unexpectedly go out of town AND is sweet on her part she cared enough to send me a msg last wk + explain today.
For that matter for her to see me today for the shunt tap on her non-clinic day when she wouldn't have had to was very nice.
Just a few more days, God willing to (hopefully) feeling better.. The plan at this point is to place a VPL (Ventriculopleural) Shunt w Peds General Surgery assisting her for the portion of surgery where she'll place the shunt catheter in to the area around the lung space (due to so many previous surgeries and drain tubes) in this area causing scar tissue.
The head (brain/ventricle) portion of the shunt placement Dr Bragg said previously she planned to use a system where she can place my head in a static immovable position (I think it may be similar to what is used during C-spine/neck surgeries) as she said it's what they use in brain tumor surgeries to prevent any movement of the head.
They use that to try and get the the best placement of the shunt catheter in to the ventricle (unsure if it's the lateral or the 4th ventricle she's placing the proximal shunt catheter in) but placement will be at the back of my head.
She uses a computer and neuro-endoscope to get a good, direct view inside of the ventricle for best placement of the shunt, trying to avoid problems we've had in the past w this particular ventricle/placement.

I'll be saying my prayers! =)

Seprately on a really sad, not very great news note and has made this surgery harder still, my Grandma who has been sick and in a nursing home for several years now passed away Thurs. night. For her sake it's actually probably better, she's free of earthly pain and suffering and in a place, so, sooo very much better than earth. She's reunited with her husband my beloved Grandpa and above all in the glorious realm of God our heavenly father.


I know God has a purpose for everything but that doesn't make it easier to understand. I trust in God and I believe he has a purpose but it doesn't make my tears of loss any less. I worry about next wks surgery and not being there for the funeral. I don't think I need to be there to remember and to have memories of my Grandma but it does kind of suck. And I worry most about not being there for my Mom. She doesn't say much about it and doesn't share her emotions a lot (we share this trait in our family, hiding how we feel) but my Sister and I have talked several times about Monday's surgery and the funeral arrangements and we both worry about Mom and can tell she's upset. Why wouldn't she be though, that is her Mother and even if Grandma hasn't been the same for a long while that is Mom's Mom.
Anyways sorry to make this kind of a downer end and all, if you could keep my Mom and family in your prayers. I've prayed about it, talked to my Mom about it, talked to my Dad some and especially talked to my Sister about it and have decided to just go ahead and go forth with Monday's surgery. This means missing my Grandma's funeral but I know her spirit isn't there anyways. It is my Mom I really worry about with it all.
Ultimately even in In all things we may not understand God truly is good, and atleast we know in him a better place awaits for those we love and lose and who have had a faith in God.
Erica ***On a add in note, INR today per Cardiology was down to 1.41 after being off for just a day (last dose was Weds) so Dr.Bragg's NP said I did not have to re-check another level before Monday's surgery. Arrival time for surgery is 10:00 with surgery at 12:00, obviously this could vary a little given it is after Dr.Bragg's clinic and not a surgery day for her.
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VP Shunt rescheduled again. New date set... Life is frustrating..

j wrote the note below last evening (Thurs night) so this 1st part is an addendum of sorts... Forgive me if it perhaps gets a little confusing reading this and then reading below, I just don't think it's a bad thing sometimes to share my emotions when dealing w the very real frustrations that come w living w/MPS.
So the plan s written below, surgery for the 12th was cancelled and will now be Nov. 16th, a Monday. 

This is a non-surgery day for Dr.Bragg and is 1 week from this coming Monday. The plan is she'll still work w/Peds General Surgery to place the distal (far end) portion of the VP Shunt.
Because Monday is my normal ERT (Infusion) day this will be ordered for in-pt by the D6-4 Pharmacists and once mixed my Nurses run it for me. As of now the surgery time is slated for 12, which generally means a 10:00 arrival time. I am sure some of whether it will start on time will depend on Dr.Bragg's clinic and if it goes on time or not.
Because I normally get INR checked the day before a surgery it is a little more complicated this time but we tentatively have it planned i'll stop Coumadin this coming Weds, (standard 5 days prior) check INR Fri at CHW through Cardiology who will let me know what the # is and send the result to Dr.Bragg's Team. Chances are likely this # won't be low enough so I asked her NP to put in a 'STAT INR' order through UW and if needed a friend said UW's East Towne Lab is open till 5 on Sunday's. My Access Team Nurses will access my Port on Fri and over the wknd i'll flush/hep lock it each day + I already have the dressings needed to re-dress it after I shower.
Otherwise Dr.Bragg was willing and is going to tap the LP Shunt this wk on 1 of the few days she is back in town (scheduled for Tues) and will draw off more fluid to give temporary relief again. This only helps the headaches for a short few-ish hours but does help appetite and other things longer so in all honesty the relief is much welcomed!
The Appt with Dr.Kovach which was originally scheduled for the 19th was able to be moved up to this coming Thurs the 12th, my original surgery date. A LOT of phone calls, messages and emails ths morning but seems to be pretty well squared away/things in place for the 16th now.

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Thurs post - prior to new dates/plan -

 I just need to say 1st, I am not venting about Dr.Bragg or her Team, in fact I am just venting about how sucky life is sometimes.
That said Oh.My.Gosh, I feel like this stupid VP Shunt surgery is NEVER GOING TO HAPPEN! I'll know the new date tmrw, but Dr.Bragg's Secretary called late this afternoon, something came up and Dr.Bragg has to go out of town again late next wk. 

She is out of town now,  but she'll be back in town Monday till I assume Weds. I asked if she did have any clinics or time or if she thought we could maybe do intermittent shunt taps as we have been? Sure the taps don't last long headache wise but the somewhat longer improvement in appetite and for that matter from a headache standpt being able to sleep a bit better at night is a little better than nothing?! 

Believe me if I had the choice I'd have surgery still be next Thurs, it sucks, actually it sucks ALOT. That suckiness said that is life and frankly I just seem to have this happen in general more than I'd prefer (happened several times last yr, has happened with other non-shunt surgeries, etc). I can't even explain how frustrated this makes me or how disappointed I felt at this surgery being rescheduled again (was 1st originally scheduled to be this Tues, the 10th). I JUST WANT TO FEEL BETTER!?!?! Life will go on though.

I'll be frustrated about it now, feel angry (at MPS, at my body, at how little seeming control I have despite all that I do to try and have control) and then I guess i'll move on. I don't think I can say i'll accept the change b/c Thurs is going to come next wk and I am going to be frustrated all over again but at the same time I am already trying to re-arrange my schedule to make appts that where the following week to hopefully be next wk. I am trying to just do what I can to make this a little more bearable in the mean time. I have to find a little light or positive or something in this or otherwise honestly i'll probably blow a lid at my frustration at my body and MPS lately. This freaking sucks!
Dr.Bragg did say she thought she'd be able to find space to tap the shunt and take off fluid between now and surgery. I don't know how long she is out for so not sure if it would just be once or what. Any little bit would help I guess and I am glad she gave me that info. I know she isn't doing this on purpose so I don't blame her it just still doesn't make surgery being even further away yet again any easier. It's like the surgery that never will happen it feels like sometimes. Literally we've been planning for this shunt in a sense for months and I've been essentially waiting since last May, since the shunt infection and our removing the 2 shunts and only replacing 1 back in to go back to having 2 working shunts.

 
When talking to Anna, Dr.Bragg's Secretary, I asked when she thought surgery might be rescheduled to (I am more than sure I sounded less than happy, not on purpose and it isn't Anna or anyone's fault I just well it's hard although I know I didn't take my frustration out on Anna, I was upset but not rude). Anyways, when I asked Anna about a new date she thought Thurs, the 19th which of course (why not, right?) is when I am scheduled to f/up with Dr.Kovach (heart rhythm dr.). 

Anna was going to message Dr.Bragg to see if Dr.Bragg would let surgery be done as something other than a 1st case surgery in which case she (Anna) felt surgery could be atleast a little bit sooner. This to sucks frankly, actually, I absolutely hate surgeries that are not 1st case as they tend to run behind schedule. I am then hungry and it just gets to be a really, really long day. I just wish surgery could be next wk, which it can't be obviously.
Since it cant be the 12th (which go figure my favorite Nurse would have been there that Thurs-Sun and then if I was still there she would have been there Tues-Weds to) it would be nice if surgery could be that Monday, the 16th but there it would be an afternoon case I am sure. 

I know to Dr.Bragg has to work with the Peds General Surgeon due to the Pleural space placement of the distal (end of) the VP Shunt catheter so that to makes rescheduling the surgery a bit more difficult.
I am to call Anna Fri morning if I've not heard from her by 10:30 to get the new surgery date so I am not sure what other date she might be considering. As I wrote above maybe that Monday after Dr.Bragg's clinic or that Weds but I am guessing it will be that Thurs..? I know Tues is her normal surgery day to but would assume she already has cases that day, I don't honestly know. What I do know is this shit can't come soon enough <-- sorry for language but is true (which is sad bc seriously who really wants surgery?)! =/
I did call Dr.Kovach's EP Nurse line and sent him an email as well to see if the Appt on the 19th could potentially be changed to next wk, the 12th, the original surgery date. I know Dr.Kovach was wanting to see if our putting in the VP Shunt, and thus reducing ICP (pressure on the brain) would help bring heart rates down. I hadn't originally thought to much about this before but we dealt w the same high heart rates back prior to May, before we took out the 2nd shunt so I personally don't think our putting back in a 2nd shunt again now will help bring heart rates down so we'll see but said as much to Dr.K...
This all said atleast on a little bit of a good note, although it hasn't really helped how tired I feel or the intermittent breathing (suffocating-ish/short of breathe) feeling the Ivabradine has helped HRs some. Based off this last Holter monitor, done 2wks after we increased the Ivabradine to 7.5mgs, 2x's a day the average Heart rates have went from ~100s to average high 80s. That is atleast some good news, if only it would help symptoms! I know my Team has said they can increase the new med (Ivabradine) to 10mgs, 2x/a day so I am unsure if that will happen. Dr.Kovach had also said something about he could add back a prior heart med or we could talk about replacing the Mitral valve.
Sometimes admittedly lately I feel like risks or not just doing the MVR might be worth it. Argh at decisions and sometimes difficult ones! I guess we'll see what he says at the f/up and what the next Echo shows in Dec., + talk to Dr.Earing (my Cardiologist) then to.

Anyways, remember the last 1/2 of this was written before I knew the new surgery date.

Thanks for stopping by, just over a wk now..

Erica