Checking back in, and I've made some real progress. First of all, I had orbital decompression first in one eye, then 2 weeks later in the other. I was expecting it to be rough, but it was the opposite. They went in through my nose, so no outside cutting. I was a little sore with nose bleeds for a few weeks, but otherwise could not tell that anything happened. Result is my eyes have fallen back, are not pushed out any longer. The doc was very happy and so am I. This was not difficult at all.
So onto the next step, which had been my biggest worry. There really is no one here locally who does a lot of strabismus surgery, especially having experience with Graves. I met with Dr James Banks Shepherd at Washington University Eye Clinic in St. Louis. Immediate relief. This is his specialty. He had already done 3 strabismus surgeries with Graves patients that week, and has plenty of experience working with folks like me/us. He explained what he will be doing with the eye muscles that he compares to beef jerky now - tough, scarred as a result of TED. He also said he thought there was a good chance that one surgery could be all that I need. However in order to get things right, some patients require several surgeries.
Let me tell you, finding someone who knows what they are doing solved the biggest worry in my life right now. That will be a few months off, but already I feel like at least I'm in the right place, and finally am starting to look forward to coming out of the woods since all this started.
The support and information on this site has been the most valuable resource to me in the process.