Tuesday, October 10, 2017

More info on today's meeting

During the meeting today, the surgeon gave us more details on the surgery, recovery, time in the hospital, etc.

Byron can expect to be in surgery for 6-8 hours.  The surgery is done with a microscope.  Byron will have a four inch hole that will be closed up with very tiny screws that the doctor showed to us.  With these screws, Byron will still be able to go through an MRI, C scan, metal detectors etc.  The bone will heal completely in three months.

Byron will be in ICU for  1-3 days and then in the hospital for another 3-10.  Because we are looking to go to Blythedale in Westchester for rehab, he may be transferred there early as they can do most of the wound care etc.

The most common immediate side effect is a kind of placid demeanor with not much personality.  This is due to the brain trying to reorient itself.  And the doctor said that Byron could just wake up completely the same as he went in.  This would be due to the fact that there is currently not much going on in the right side.  The MEG test results showed there was no activity there at all when Byron read or moved his eyes or spoke, other than seizure activity, so that is a very good sign.  And all the seizure activity is still originating from the right so that is very good.

The surgeon promised they would call us today with a date but that didn't happen.  I will call them tomorrow to see what can be done about getting a date.  The surgeon said that we can start with a date even before he is presented because even if they choose the VNS instead of the surgery, it would be the same team.  What we didn't make completely clear is that if the team is only willing to do the VNS, we will go to NYU for another opinion.  As the team is not the ones seeing the regression as we do, we can't possibly wait the 8-10 months that the VNS will take to work.  And as the surgeon said, we may end up here again in a year with a VNS failure.   The thing that makes me nervous is he strongly recommended the surgery last year when Byron was presented but the neurologists convinced everyone that we needed to try more drugs first.  So they do have some sway.  Ah well - another two more days of waiting!

Below are some pictures he showed us of Byron's MRI. The white space that can be seen in the right hemisphere is fluid.  According to the MRI , the left hemisphere is completely normal and seems to be doing all the good work.


  1. Sending so much love. Daisy says hi!

  2. Hey!! Do you see the heart in the center of the last photo????💛💛💛

  3. Sending lots of Love and envisioning better than ever for Byron. Sweet, creative handsome Byron! 💖💞❣



Sweet Byron, who has lately been a very healthy guy, will be having a heart procedure called an ablation on Tuesday August 24. In February ...