Scans, Cultures and Biopsy

It has been a week filled with all sorts of tests, scans, cultures and finally yesterday a brain biopsy.  On an MRI that was done a few days earlier, the Drs viewed something new for the first time.  There were 'signals' visible that indicated something was going on in Dave's brain that had not been visible before.  The primary neurologist working with Dave thought that these were viral in nature.  Yesterday they removed a very small piece of Dave's skull and inserted a needle into his temporal lobe in order to obtain a sample of brain tissue to run cultures on it.  Dave did very well through the procedure and is doing well now with only a small bandage indicating anything was done.  The tissue that was obtained will be sent for testing and cultures and it will likely take some time to get the results.

Dave's Drs have started to question the original diagnosis of Bickerstaff's Brain Stem Encephalitis because they would have expected to see more improvement by this point with BBE, but BBE is so rare and there is so little research on it that I am not sure if any of them really know anyway.  The big question mark with the BBE diagnosis is what prompted them to start testing aggressively again to see if they could find anything else.  I know that some may be thinking, oh no, now what...but really this doesn't necessarily need to be a bad thing.  I felt that way at first but then my husband said something that really made sense, he said it is like Dave has been fighting someone in a dark room for months now and someone just turned on the lights.  It is easier to fight something that you can see.  The appearance of these signals on the MRI at least show a direction to go in and hopefully that direction will lead to ultimately a more consistent diagnosis, treatment and recovery.

As soon as this MRI revealed these signals, a high dose steroid was added to the regimen of medications that Dave was receiving.  It appears that the steroid is having a positive effect.  He is moving his toes on command and there appears to be more muscle tone in his legs and arms.  His primary neurologist is very optimistic about the small signs of improvement that he has seen in the past week however Sharon is still very cautious.  Every time she has allowed herself to get hopeful at these small signs she has been absolutely devasted when he has a set-back so...she is remaining cautious.  Dave has also been fever free this past week and his other vital signs are good, so it looks like this second run of pneumonia was kept under control from early on.

As always thanks for the comments and keep them coming.  They are a constant source of encouragement and support.