Sunday

We felt that Thursday was a successful day at the neurosurgeon and truly feel blessed that He led this neurosurgeon to work with me.

He was willing to adjust the shunt for me.  It is adjusted back to the setting that I was at this summer and felt so well with.  Both the neurosurgeon as well as Kyle and I are not sure why my head was so good this summer and then deteriorated after the most recent surgery.  Many unknowns in this journey and it seems as if this is a trial and error disease with no clear answers.  It took a few days for me to settle into this new setting again.  I just feel "out of sorts" for a few days after an adjustment and this wasn't an exception.  But my head is feeling better and I am thankful for that!  It isn't pefect and I am still really struggling with the sensitivities, particularly to noise, but I suspect that this is going to be a lifelong battle. 

The plan right now is to wait a week to see how this shunt adjustment feels.  If I am still struggling, the ns would like me to have a spinal tap just to see what my pressure is doing.  Based on the result of that, we might look at a small surgery to add an anti-siphoning device.  Johns Hopkins had been talking about this as well, so we will see how this works out.  The positive is it may help if I am overdraining while I am up.  Evidently it drains more while I am up and drains less while I lay down, which may explain why I feel better after laying down for a while.   The negative is that it causes the shunts to malfunction more quickly.  Or there are a few other things that he thought about checking again depending on the results.  So we will see what the week brings and pray that the Lord guides our steps!