Just a thought for you. Since your TED symptoms began in March, plus the fact that your eyes are still changing, you most probably in the active phase of TED. in my experience, it took almost a year to get to the inactive phase (by my own observation, plus objective measurements) As I have stated in prior posts, I was looking at strabismus surgery as a life-changing, in the most magnificent way, event for me. I pretty much followed the same path you have done. Had lots of prednisone, 60mgm/day plus the taper, plus Solu Medrol IV for three days. This improved the DV slightly for a few days, then back to crippling DV. My docs dod not want me to have radiation to my eyes.
So, strabismus surgery was wonderful for me. Immediately resolved my DV. There is a lot of information in the search engine about my experience, plus a long thread about strabismus.
I was just as frustrated as you, and a pretty crazy and impatient person waiting for the inactive phase. What happened, is that it was so awful, the strabismus surgeon gave me a choice of doing the surgery before we were SURE that my eyes weren’t changing anymore–or waiting another 6 months. I elected to go ahead, knowing i Might have to have more strabismus surgery, if DV occurred after the original surgery. Plus all the complexity of doing it again. It went well for me.
Shirley
