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Jennifer
I had the fat removed from my upper and lower lids first and took care of the double vision. Now all I need are my lids lowered.
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Hi all,
I see there is a discussion about eyelid surgery. (I just got back from a 2 week vacation-what a boost that was!) Today I had an apointment with my eye surgeon (1 year follow-up after decompression). He has found that my right lid has retracted considerably from 1 year ago (post-surgery 1 month measurements). He thinks I have an active phase of eye disease going on. Basically that means let wait and see what they do. But my question for the bb is what kind of activity with eye disease would cause lid retraction? This is very different from what I went through before decompression.The other thing he found was that my eyes are protruding even less than 1 month after decompression. So I guess it is true that the improvements after surgery do take a long time to be fully noticed. That was great news for me. (I was worried because of the retracting lid.)
Thanks for any input on the lid thing.
BeckyBecky,Glad to hear that your eye measurements, post-decompression are so good. I wanted to respond about the eyelid retraction because I have had a history of appearing to be stable (meaning that there are no outward or physical manifestations of active TED for up to year), and then going through eye surgery, only to have a flare up about 4 months post surgically. Very frustrating indeed. I guess there are some of us whose active phase is prolonged and goes through phases of being dormant and then active. I ended up taking a 2 1/2 year break from surgeries because they seemed, in my case, to be causing the flare ups. Have you talked to your doctor about going on prednisone on a low dose temporarily until things quiet down? I went on prednisone for an extended period (over a year) but took a very low, “pulsing” dosage (like 5mg every other day) to keep the flare ups in check and that worked very well. I am always careful about my diet and while on the prednisone especially because a side effect is that you get extremely hungry! Be careful of that if you take it. That’s one reason some people have trouble with their weight while taking it. You didn’t say what your doctor thought about this or what his plan of action might be. Don’t know if this helps except to know I had a similar experience. I have been through decompression and lid re-building and so far, a year later (knock wood), I seem to be out of the woods so it WILL end for us all. That’s the best news.
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