Monday, August 17, 2015

Feeling the feeling I don't normally feel..

How was that for a play on words? (the title) =)
I don't often get this feeling with surgeries (nervous) and honestly my being kind of nervous isn't even about the surgery it's more about is this valve going to work/is it going to cause the same extreme spine-nerve irritation and wicked stiffness I experienced back in May/June? I still get the neck/upper back stiffness to some extent on and off but it's no where near what it was when we had the '0' pressure valve in place on this LP Shunt. I sooo want this valve to work/to be enough for fluid drainage to relieve the CSF/pressure headaches but admittedly worry a little (the nerves thing) we're just going to make things worse again.

I completely, 110% trust Dr.Bragg, even if it seems like at times perhaps I don't, my posts and uncertainty have nothing to do with her, b/c I've learned she is really persistent, she cares and even when she doesn't quite know what the best answer is she'll ask around, research and try to come up with a new possibly better plan to help vs just abandoning me b/c it's gotten to complicated. She also works with my other drs. and coordinating is a feat in and of itself on some things!
I actually really feel for her, it has to be hard I would think to have a patient like me who it isn't simple, we get good times but then it's as if my body changes and we have to find a new 'better, good normal' (I know that's probably an odd way to put it) in how to manage this. It is why I think she is amazing, when so many others would give up she has not.
In any case I just pray this might be the answer, I pray it goes well, that Anesthesia goes well and whoever we have assigned to mY Team (usually 2 drs.) is someone familiar with my care that is good about the necessary pre-surgery med dosing and with the airway issues/cardiac issues.
I pray if under the really frustrating circumstances this valve wouldn't work Dr.Bragg is able to come back with a different idea; honestly ultimately I pray if it came down to it we could try a valve like what we're going to do (if it didn't work or caused to much irritation but was enough or close to enough drainage) we could do 1 fixed pressure valve in maybe a bit higher of a setting and 1 (maybe?) programmable valve in a 2nd shunt again which I honestly do just feel is what could be best and could work better now that there's no infection (as there was the last time I had a LP Shunt and a VP Shunt together)...
Obviously it's not up to me but I really feel like with how much better LP Shunts work than do the TPL Shunts we could get a good valve in that shunt and then maybe a programmable valve in a VP Shunt I feel like it could be high potential to be much closer to really good.
Anyways, I guess we'll see, right? It is all in God's hands and in God's time re when things will be good and he is with Dr.Bragg (really any of my Providers, all of us) I know in everything we do.
I have ERT on Monday. I do plan to call Dr.Bragg's Secretary I think to make sure everything we need beside INR level is in place on top of many other un-related phone calls I have. Tues i'll get INR drawn back at CHW (I spend a ridiculous amount of time driving back and forth to either Milw. or back and forth to Madison during a wk!) and have Port accessed for Weds.
Exciting times!?
Thanks for stopping by, will update after Weds's surgery, am so praying it is a success!

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