brains should stay where they belong

Oct 21, 2015

I have an Upright MRI today to start the process of discovering if the ligaments holding my brain in place have become so lax that my brainstem is being compressed or CSF flow is being blocked. If those things are happening, the answer is most likely brain surgery.

Oh, my goodness, this feels big. And yet I am doing quite well at staying calm and in a place of trust in God.

During the surgery, they open the skull, trim the cerebellar tonsils, cut away part of C1 and possibly C2 to make more room for the drooping brainstem – so it is not being compressed – and make some sort of covering for the dura matter. Then they fuse C1 and C2. It is a big deal with lots of risks and a big recovery period.

At this point, we don’t even know if I have this problem. Several things have pointed us in this direction, but we don’t know. And if I do, we don’t know that we would decide to do surgery or if it is even my best option. Often I have a pretty good attitude about this whole connective tissue thing, but right now part of me is scared and overwhelmed and a huge part of me doesn’t even want to find out if I have it or not. The thought of my brainstem, the thing that is keeping my alive, being compromised, is a lot for me to take in right now and part of me wants to run away from the whole discussion.

I’m a little nervous about starting down this path and would be ever so grateful for your prayers that one, I make it through the testing without an episode and two, that the people doing the testing will be guided by God to get the images we need to see.