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  • Anonymous
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      I have active Grave’s disease. I was diagnosed October 1994 and have had RAI, catarac surgery in each eye, swollen tissue suctioned from upper and lower lids of both eyes, and now, on July 22, 1998 I finally had the bilateral orbital decompression surgery done.

      I can’t tell if my eyes look normal or not. It’s been so long with bulging swollen eyes.

      They are more comfortable now, however, since it has only been two weeks since surgery, I still am numb in the nose, cheeks and upper gum areas. It takes about twenty minutes for my eyes to focus in the morning, but they finally take hold. I have slight double vision at that time, but as each day goes on it gets better. Muscle control is still tight and peripheral (sp) vision is not right yet.

      Went to my opthal-surgeon at U of M Kellogg Eye Center for my first post op check up and he says things are progressing nicely. I can only wait and see. It seems with this disease that’s all you do.

      All in all at this time, I am glad I had surgery done, although it was one of the scariest ones so far.

      I guest this is a disease you live with the rest of your life, so we must do all we can to make ourselves comfortable.

      Best to you, JoAnn

        Post count: 93172

        Dear Jo-ann:}
        Hi there , this is Barb you probably have seen my name here before the reason i’m posting to you is I go next week to have the decompression booked so could you keep me posted as to how your doing and if you think it was worth having done or not ,as I just had tthe 10 radiation treatments done in the last few weeks so if you don’t mind i would really appreciate this because your so right with this disease all you do is wait so so regards to you Joann
        little warrior Barb if I have spelling errors its because I can’t see very clear yet so bare with mr everyone 7 thanks

          Post count: 93172

          Jake’s surgeon (he is one of the tops!) told jake he would not operate on his eyes while he was still active and not under control thyroid wise due to changes that are still taking place in the eyes! I hope this helps.


            Post count: 93172

            Dear Barb, It has been 2 wks since my surgery. I have been back to work 4 days now. I still have difficulty focusing in the morning and then later in the day after lots of eye use. No cross eyes, very little double vision, only when tired. Hopefully, each week will show great improvement. A wait and see situation again.

            If your eyes are sensitive to the elements, as wind, light, dry eye – then then decompression surgery should help relief these problems.

            My one eye was always more exposed than the other. More bulgy and more eyelid retraction. It will be interesting to see if I will need the eyelid muscle snipped to bring it down.

            Right now I am glad I had surgery. I look “normal,” but mainly I hope that in the next few weeks I will have comfortable eyes. They seem to be heading that way. Hope I don’t have any set backs.
            Best to you,


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