Monday, April 23, 2012

Actual shunt surgery scheduled, 2 part update

Wow, what an up and down day with right now being pretty down (as far as symptoms/headache) and so im not sure tonight is going to be very productive but maybe this will turn around!? Anyways, Dr.Bragg's office called and initially where just scheduling an appt for next week but then when I asked her Secretary if we where going ahead with the surgery right away this coming fri or waiting till after I saw Dr.Bragg she asked to call me back. Turns out Dr.Bragg had to go out of town for a family emergency and so they still where able to get ahold of her and she (Dr.Bragg) verified that she would like surgery for fri. So that is scheduled for they think as of now early afternoon with arrival around 10 or 11 (verified the day before as usual) and to place the 2nd shunt in lumbar spine to peritoneal. Pre-op is scheduled with my PCP for tomorrow.
Lisa, Dr.Bragg's nurse called back a bit ago and she asked if I had any other questions plus to say she was wishing me luck (very sweet) and that she had heard from Emily, the NP that she (Emily) was pretty excited how well I felt last week and how big of a difference the drain had made.
 Dr.Bragg and I emailed  last week about potentially doing MRIs while the lumbat drain was in this a  but then I kind of forgot about it possibly getting done and although I even had it written on a list of other things both related to the drain and non-drain related, non-shunt related things (stuff to reschedule, some records to get copies of for another provider, info I wantd to look up for another site, schedule conference hotel, etc) in true me fashion I didnt think to ask Dr.Bragg if we should do the MRIs. I guess it doesnt matter and we can get them done at some point.  My reason for asking her if we should do them was the lumbar spine discomfort, leg symptoms and feet intermittent-numbness and those all did seem to really improve with the external drain so hopefully all symptoms where just related to the high pressure from the CSF on that area.

I think what im most nervous about with this new shunt addition will be that with the External Ventricular Drain (EVD) we had complete sytmptom resolution and I worry a little that could it be the not enough CSF draining from just the VP shunt is from some aspect of peritoneal issue? I dont know and I do trust Dr.Bragg as ive said before but I think I just realllyyyyy hope we get as good of a result from this actual LP shunt as we did from the external lumbar drain. The other thing I wonder and I think will just be situational likely is how do they know which shunt is causing the problem if a problem does occur again? I imagine she (Dr.Bragg) would do a shunt tap or check the reservoir refill time but am not certain and will ask that. All these things a person as ive said or atleast in my case just doesnt think of when your actually talking to your dr. I really cope well when I have information so I think that is why I think of some things later on and not when actually talking to my drs and I also just need time to process information.
Ooh well a  person can have nerves sometimes, right!? :)

These pictures below are from sunday at my parents with my niece and nephew in the backyard/field.
                                            Red Admiral (Zander's catch)

                                          Zander and Jordan's Butterfly catchin'

Sunday April 22, 2012
Well it's sunday and this has been one of those "it's a work in progress" updates but needless symptoms have continued to retun over the past 24+ hours since the lumbar drain was removed Saturday morning. Right now those symptoms include the headaches/pressure, vision, GI, low back/leg numbness and other sutonomic symptoms. It is of course a bit discouraging to go from such complete symptom relief to knowing you have to go back to having symptoms to actually having those symptoms and knowing it will get worse but I also know I have a neurosurgeon who has ideas and has a plan and hasnt given up over all this time so instead of feeling sorry for myself  and why do I have to deal with this I just focus on 'it could be worse' and the usual 'one day at a time' as far as symptoms go. Instead today I went to church and a couple errands and then went over to my parents where my sister-in-law and brother, niece, sister, brother-in-law and nephew + niece also where and a nice way to semi-forget how you feel.  Tomorrow i'll work on figuring out this week and what will happen when as well as what do I need exactly to do before the actual 2nd shunt is placed ie pre-op, do I need to make an appt with Dr.Bragg to get couple stitches from external drain removed or can they in fact wait till the actual surgery, other calls, etc.

Both the EVD and Lumbar external drain worked wonders for symptom resolution - if we cont to have problems after this 2nd shunr is placed it makes me think we have to re-think the distal  (currently peritoneum) location of the shunt tubings as these are the 'other' varables? hen I had asked Dr.Bragg why she thougt the pressure would have been so different/high at both brain and in lumbar spine despite the VP shunt she mentioned perhaps it could be compartmenalized but didnt think that was the case and just couldnt say.  Bc we by-passed the peritoneal portion of the drainage everytime we did the  external drain it makes me wonder if there isnt a connection there if we would have future on-going problems.. I sure hope this works as well as the actual drain though! The other question  Is it more a distal issue vs brain compliance issue or a combination im not really sure of.

Anyways those where just some thoughts or things I couldnt help but think of, will update when there is more,

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