Thanks Hazel,
The injections were recommended as an alternative to upper lid retraction surgery only, not a fix for all the various symptoms. At the time I asked, several people posted info for me including research material. If you’re interested, search the archives by subject & look for “Botox . . . ” ,(or by date — March? Early April? I don’t remember argghhhhhhh). There are also much older archived posts on this subject too. I made a decision to go with surgery instead of the injections. There are very, very remote but serious consequences to the injections & I’m just not brave enough to risk them when I am so familar with this surgery and its consequences. If I had not already had this surgery, my decision may have been different. For anyone else reading, I am in the tiny minority of people with recurring TED symptoms, this isn’t typical.
The surgery was put on hold while my endo addresses another health issue I have or I’d have had the surgery this week. Now for the kicker. For the past week or so I have been sleeping with the affected eye closed more tightly than I have in all of the past 3 years since the last of my eye surgeries. So the surgery or injections are at this time not even necessary (thank God). I’m really glad, but I don’t get it. For whatever reason, this bout of TED seems to have been transient. Maybe the TED has finally run its full course? I just don’t understand antibodies and what they do. Maybe this bout was tied to my recent sky high blood sugar levels? I’m seeing my endo again next week and will post any answers I get. I am now really curious about any link between TED flare-ups & blood sugar levels.
To all: TED can be transient and there is at this time no way to know if yours is or isn’t. I am not recommending that anyone put off surgery or radiation in hopes that the symptoms go away on their own. Severe TED can cause permanent vision loss.
Hazel, Thanks for your concern. Are you trying to decide on a course of treatment for TED? Hope all is well with you (or at least improving day by day). SJS
