Neurosurgery Appt; nothing really. OHS-Heart Surgeon Appt next wk.. Sometimes it's just hard..

Had Appt with Dr.Bragg today, this was rescheduled from yesterday due to the weather and not her clinic day so it ended up I got done in Rardiology about an hour before the Appt was scheduled for.
I just went over to the Children's Hospital and figured I'd wait, turns out she was in a surgery so she sent 1 of her Residents down (1 whom I think will be a really good Neurosurgeon but not really familiar w/my not very normal presentation) and anyways wasn't exactly a forthcoming appt. I suck at explaining my symptoms and especially what I have been experiencing lately so wasn't to optimistic when the Resident came in that anything would be figured out.
After we talked he went back and talked to Dr.Bragg in the OR and they called back down to 1 of her NPs who came and talked to me again. I figured this would be the case b/c I don't present very normally, I suck at explaining how I feel/what's different and yet Dr.Bragg is pretty good at figuring me out while most others are not generally. Anyways Dr.Bragg I guess opted to wait and see (fine) and I should call them back next week with an update or if anything has changed. Given this has been going on for a week or more and the memory/feeling very off has been since the 1st surgery (hard to explain this one) but had improved also a good deal when we turned the shunts down to drain the most (lowest setting on each shunt) I am not all that optimistic it's just suddenly going to improve. Can hope right?
I have no idea how to explain this and if I did I think it would help me explain it to Dr.Bragg who in turn then might have a better idea. I do 110% think (know) it is shunt related just don't know what or why or how to explain symptoms.
I have been wondering if the VPL Shunt is either sitting against some weird spot in the brain or in a spot it's never been before that can cause irriation and thus changes in the areas I've been dealing with? Again I honestly just don't know how to explain this. I do think this shunt (VPL) is working as when it seems to drain several times a day the irritation is very present albeit even if annoying I can live w the irritation b/c it typically means i'll finally feel some better. - Honestly I feel like I am talking in circles trying to explain this!?..

Even the vision issues, though I've not received my new glasses/lenses yet I have to admit I am not very optimistic this is going to help the overall symptoms either as it is the same visual presentation I get anytime there are shunt issues. Am still hoping a little though.
I do wonder and wondered even before we put this 2nd (VPL) Shunt in if the LP Shunt is not working well or not working very well for a couple reasons.
1. Prior to our placing the 2nd shunt in early Nov. when we'd tap the LP Shunt we weren't able to get very much fluid off and was very uncomfortable during the taps. I have had on/off leg pain which I also had last yr when the TPL Shunt wasn't working but we where not aware and the leg stuff just gradually built up to worse and worse over months but our being unaware it was caused by the non-working/not working well TPL Shunt made it an issue we just tried to then manage. The leg symptoms completely went away when that shunt was fixed (or maybe that's when it was removed cant remember exactly).
It' quite possible it is not the same issue now but seems similar; who knows?
In any case I don't know and wish it would just improve on it's own. I obviously like and appreciate Dr.Bragg but so wish I didn't need to ask for her help and so wish this symptoms would just go away on their own.
Admittedly (and I rarely share how I feel, today being an exception on fb and here) I worry a bit about if I end up going in to the upcoming OHS like symptoms are now seems a little daunting. =/ I also wonder from talking to a friend whose daughter also has complicated hydrocephalus (but only 1 shunt) but has multiple valves in place.. Her Mom said this was so her daughter wasn't going in every other wk for revisions.. We did try something similar back when I'd had just 1 shunt and didn't work at all b/c way to little CSF drainage..
I wonder would adding a 2nd valve to just 1 of my current shunts maybe help better now? Obviously I'd still have 2 separate shunts and would trying a 2nd valve in just 1 of the 2 shunts to slow CSF drainage a small amount? I don't know and not sure what Dr.Bragg would think but worth asking her about I guess? This way 1 of the 2 shunts would still drain free flow? I cant say I feel entirely optimistic we'll ever figure a perfect answer out but worth asking I guess? I do trust Dr.Bragg, atleast she hasn't given up so far..

Heart Surgeon Appt
I meet w my Heart Surgeon next week, not sure if she is/was able to arrange her schedule to be there but if so the Anesthesia dr. whose done all prior heart surgeries and procedures in the last 2.5yrs was going to try and arrange her schedule to be at either this appt or at the pre-op appt as she wants to be able to have in place an immediate post op plan for how long they'll keep sedated/intubated after the heart surgery and better management plan this go round. I trust her and know she has been thinking about this for some time so am glad this dr. has been considering this re post op management.
I have some questions for the Heart Surgeon and my Team including
1. What is new Coumadin/surgery blood thinner dosing when we do the 3rd OHS/2nd implanted heart valve?
2. Is the Port going to be ok in this surgery? - An important question to me to know/have a plan b/c of the difficult peripheral IV placements and weekly ERT Infusion.
3. What valve (mechanical I know) is he planning to use and straightfwd OHS (vs aortic valve we had to do aortic route enlargement in order to use an adult size valve) or does he feel he has to do something else?
4. On the off chance they do do have to place a chest tube on the R side what is their plan w the VPL Shunt catheter (ie what will they do with it, place via connector with my LP Shunt, externalize, etc)?
5. What is immediate post op plan (this goes more to my Anesthesia dr.).
Just some questions I have and better to ask them ahead of time since I am meeting with him next week, a few weeks ahead of the heart surgery.
Stay tuned, if you believe in it please say a prayer I an able to sort these headache/weird symptoms out and 2. things settle. I do not like having to ask my Providers for help and feel bad when it's less than clear.
Thanks for stopping by,
Eria

Eye Appt, seeing Dr.Bragg.. Christmas was still good.

Last wks Eye Appt went ok, turns out there where changes in several areas though I am not sure I'll remember it all correctly.. Vision wise the astigmatism is worse, far sighted vision has worsened and he added to my eye glases script for near sighted issues as well which he said had worsened since last yr. I can't remember what the 1 other issue was but mustn't have been to big. I did figure out if when they put in the dilating drops you don't keep your eyes closed the entire time they say your vision will be blurried but certainly not as out of focus as otherwise! This was nice and good as I had somewhere I wanted to be a few hrs after!
This yr the Eye dr. highly recommended (emphasized repeatedly) that I add the bifocal option to my new far sighted lens script. In addition last yr this Dr had recommended bifocals but the script was mild enough I could get away with out it (mostly just didn't want to adapt, lol) and honestly when the shunts where really good vision for reading was much improved so those periods where shunt(s) weren't as good I just haven't read much.
Thankfully things like this I can enlarge as I type and edit (though clearly anyone who reads this knows I still seem to likely miss enough). =)

The vision issues have admittedly stunk some as I love picking up a good book to read so perhaps it will be a good thing if I can get used to having the bifocals on the new frames as I can hopefully read more easily again?
Hopefully these things will help overall though at this pt (not yet having the new script or frames) I admittedly am thinking it's pretty unlikely the worsened pressure/vision is going to improve just by having the new/stronger glasses (lenses). In the past almost anytime vision was like it is now it would improve when we got the shunt/shunts working better again so I admittedly just don't know. Who knows?
I should get the new frames w/lenses (very similar in style to my current) sometime later this wk.
Because the pressure/headache type symptoms just seem to be getting worse over the past few weeks and not at all improving + the vision and in general so many areas just off I talked to Dr.Bragg and am going in to see her tmrw (Tues). She would have seen me today (Monday) but the weather here in WI is pretty miserable so she offered to see me Tues. which I am grateful for. I think she may be on vacation or not in the office the rest of this wk, I am not entirely sure but whatever the case very grateful she made time to see me.
I was really, really, realllyyyy trying to avoid having to see her (not b/c I don't like her, she is more than kind and has done so much for my care) but just want to figure this out, this time has been weiirrddd in many ways compared to many shunt issues.. I am always amazed honestly she doesn't give up and doesn't seem to get tired of trying to help me!?! I am definitely grateful though.
Like I said I really wish I wouldn't need to ask for her help, again not b/c she's not in reality amazing but I also know these symptoms are so off, worse than sometimes (but not vomiting off, just off in a weird, hard to explain way) so Dr.Bragg's Secretary called this morning and they've scheduled a CT Scan + Appt with Dr.Bragg Tues afternoon.
Hopefully, maybe some simple answer? I meet with the Heart Surgeon next wk Tues and this wk due to the weather today am missing ERT. It is a LITTLE frustrating that given FMLH's infusion clinic is open 7days a wk they can't manage to fit in the ERT Infusion a different day this wk but it's always that way "b/c your infusion runs over such a long period". When at CHW and my Infusion Nurses did ERT 1 day a week then had regular jobs at CHW they still managed most of the time to be able to reschedule infusion for a different day during the wk if I was sick or bad weather.. FMLH is CRAP in this regard!
Ironically, unrelated (and I don't at all regret not taking the earlier date) but had I opted for the 1st OHS date offered 1.5wks ago i'd be done with the 3rd OHS and on to recovery. Like I said though I don't regret not taking that 1st offered date - I am glad to have been able to spend Christmas outside the hospital! We had a good few days, even if I wasn't feeling the greatest at many moments I am still very, very grateful I was outside the hospital and with family!
Will update any info from tomorrow's Appt with Dr.Bragg in the next day or two.
Thanks for stopping by,
Erica