Tuesday, October 4, 2011

And so it is..not to much (neurosurgery appt and vacation)

Headed to vacation - Zander and Jordan riding together
Jami (my brother) and I doing a puzzle - Jordan's
Playing cards

Back from vacation which my family (parents, sister and her family (including niece and nephew) and brother and his family (including niece) went up to the Mn/WI border near Winona, Mn for the past 4 days which was a tad stressful the first day but then pretty nice and we did a lot of driving around to parts of WI area and up to Rochester area of Mn as well 2 days. Just nice to get away but nice to be back to! I'll try to post new pics soon as I have a bunch and my sister in law also took over 400 or so which i'll only pick a few to put up in the photo slideshow.

Headaches where actually pretty decent this weekend  - I get these very odd episodes where I think the fluid is draining as I can feel a very unusual sensation throughout the valve to ear portion of the shunt in my head but mornings minus minor symptoms where not to bad which was really great. I do wonder if there can be issues with CSF taking a while to absorb from the peritoneum in to the body but non the less I was just happy to feel pretty good almost all the trip! Now if only I could get an appetite back that would be really nice - mostly id just eat a meal once a day and then just snack on little things which has been the habit for some time now and the cause of quite a bit of weight loss (7pds on a small/thin body already). Hips also while painful several days where relatively mild the other days so 50/50 is duable pain wise to me! :)

I'll try to update again soon but below is the entry regarding seeing my neurosurgeon last thurs that I started thurs night but never finished.


Later on in the drive (about 4 hours) I am with Zander and Jordan in my brothers car - tight fit but fun!
Sept 30th 2011
Today was the day ive been waiting for, for the past almost 2 weeks - I got the staples and gauze taken out of my head and my neurosurgeon also took out part of the sutures in my abdomen/stomach which she said those along with the sutures in my head will dissolve. I think they where as curious to know how I was doing ass I was happy to get the staples out. I commented that mornings are still rough but that it seemed like every few days I still have noticed improvements in symptoms and so maybe we just need more time for my body to heal and soon enough my mornings would catch up with how my afternoons and evenings are ie much less headache and more energy. My neurosurgeon recommended trying to sleep upright (I sleep semi-propped up but maybe need to revise this as perhaps the way I have been sleeping could be partially occluding the shunt at night or maybe the way I am sleeping just isnt elevated enough for CSF to get through.) In any case my neurosurgeon said she thought maybe bc we have done so much manipulating to shunts and my body in the last month or so (4 surgeries) that with healing this would improve - we both agree that we think we should give it more time which I am fine with! I am sooooo happy to have the staples out and although the area that is shaved/clipped is going to be interesting to match up with the other hair atleast I have thick enough hair I can part it differently and will cover it! I think that it be will be pure awesomeness to wash it fully tomorrow!! I am not at all worried if for some reason the shunt wouldnt acclimate and I wouldnt start to feel better in the morning (although believe me im hoping and praying and optimistic and so to is my neurosurgeon) bc I at this point know my neurosurgeon would do what she could to improve any residual symptoms as she is a rare kind that truly believes me when I say something isnt right. I totally love this! Being the absentminded person I am I forgot to write down a question I had for her about a neurology/care issue but she also asked me to keep them up to date on how things are going and if I do get to the point before I see them where I am hopping out of bed in the morning with energy (I had said to her I couldnt wait to feel so good h/a wise that id wake up in the morning and be jumping out of bed bc I had so much energy.) ;) and so I know I can always call her nurse or even email this dr. the question I forgot. Atleast I remembered a few other things.

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