Sunday, May 25, 2014

Neurosurgery Appt, 5/21

I actually wrote the rest of this the other day and then forgot to post it so will just add a bit to say that our adjusting the shunt helped some; enough for now which is AWESOME!! This weekend has been pretty good, tiring but good enough which I will take! Yesterday I went garage saling on and off with my Sister, nephew and a friend of hers - the garage sales kind of stunk but was still fun and the weather has been GORGEOUS finally!
Today was the 1st Flea market in Cedarburg (about an hour from where I live) which is huge, I typically end up sitting down multiple times throughout as it is incredibly tiring on your body but still fun. I didn't buy much but being outside is good enough. =)
Afterwards we ate in Hartford and came to a Greenhouse my Mom, Sister and I go to (is a craft type store to) which means more flowers! I haven't taken pics yet of my potted flowers and need to get more dirt but love what I got today - many varieties of flowers and colors!
This coming up wk is a cookout at my Sister's, ERT Tues, Cardiology Thurs., and PT Fri + may meet a friend after.

I saw Dr.Bragg yesterday (Thurs) due to the increasing headaches yet again, we talked about various thing including the newest cardiac med (digoxin) and she commented about how the heart (heart rate) issues likely play a small part in the headaches as does what she believes are changes in ICP (intracranial pressure) needs even in shorter periods of time. I had commented how it is sometimes frustrating that we get improvement w/a shunt adjustment for a few wks and then is like it starts all over again.

We opted to adjust the VP Shunt setting down to '40' (I think sometimes I am losing my mind, lol, I could have swore that is where both shunts where set at when we adjusted the VP Shunt some wks ago but I don't always keep track either).
We both agree it isn't that the shunts aren't working (is completely different to tell since I have 2 shunts, so if 1 isn't working very well the other can pick up some slack) but it's possible 1 of the shunts isn't working very well and if this setting adjustment doesn't make much or any difference she said to come back in and she'll likely tap the VP Shunt to see how it is flowing.
It seems like she must think about my driving in to see her as she'll often comment along the lines of my having to make another trip when we're having issues but I am just grateful she cont's to try and cont's to try to think outside the box; that she still seems to take the whole situation in to account..

On a completely separate but I guess related note, I just realized today, it has been 3 years since I started seeing Dr.Bragg, 3 yrs I think since our first shunt revision (that had turned out to be more complicated than originally thought) at that time I still had a LP Shunt (lower back, ran around where valve was implanted on the side and ran in to the abdomen); an hour or two surgery ended up being 6+hrs as it was more complicated due to what she had to do w the spine nerves, shunt, etc. Non-the-less 3 yrs!?!

It has been 2 yrs since she placed the 2nd Shunt (the VP Shunt was added in Oct the yr I started seeing her, the LP Shunt had been tied off at that time and in Dec of that year it was removed when everything was first taken out due to a CNS infection. The 2nd shunt was added in May 2012.
Almost 30 (if not that many) shunt surgeries and procedures later, 2 OHS's and several other smaller surgeries un-related to her and she's stuck by my care which is AMAZING!
I know I doubt that Providers will want/chose to stay on my Team and chose to still care and yet deep down I know with her and with my Cardiologist they are in it for the long-hall and I as their patient need to be more trusting even in the times of un-certainty (remind me of this next time I am writing here about being nervous/scared/uncertain)..

I am eternally grateful she took on my care and that she never gave up, that said I really would love it (see above, soo psyched, hope it lasts!!) if this adjustment would make a bigger difference and we wouldn't have to do anything!?!?!
Thanks for stopping by,
Happy Memorial Day, remember the reason for this weekend!

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