Hi all. ~~ The same thing happened to me, and I went to see a Dr. recommended on this site, Dr. Henderson. He totally 'pooh-poohed' ES, saying he "used to think it was a big deal" but didn't anymore.
When he asked if I'd ever considered that it might be TMJ I wanted to say 'do I look like a moron?' I mean, that's the first and most obvious thing that comes to mind when you have face pain!
He was fairly quick to say I likely have EDS .... I'm skeptical. And he recommended LOTS of follow-up tests, some intrusive (spinal tap.)
I got more information from Dr. Snyderman in Pittsburgh (I had to travel there ... I'm in the DC area.) He was wonderful and willing to do ES surgery in as early as 3 weeks. His protocol is one night in the hospital after surgery. That said, he could not guarantee that my symptoms were actually from ES and that since mine has been soooooooo long (24 years) its likely that the damage is already done and irreversible.
I did like him VERY much. And even though I'm disappointed and confused with Dr. Henderson, I thought he was ok too.
I don't know what I'm going to do .... I'm following up with my Rheumatologist I've been seeing for years. I'd think EDS would be under his umbrella.
Good luck to everyone, and may 2014 bring some freaking relief!!
~Can't remember my 'on-line' name! Oh ... Hopeful