Now that my son Joe has completed his inpatient stay at Jefferson, he is very impatient to try anything else that will get his life back. His headache is only a shade better and his sound and activity triggers are unchanged. So he is still in bed most of every day.
One thing he would like to try ASAP is the trial PNS surgery I spent a couple of days researching the options and it seems there is no one who does this in the Washington DC area who is recommended by his patients. There is a man at Jefferson, Ashwini Sharan, and one at NYU, Alon Mogilner, but I haven't found anyone closer than that.
Does anyone have any knowledge about where to look?