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  • Anonymous
      Post count: 93172

      Hello everyone. My husband and I attempted to get on the Chat Room
      for the first time tonight, but did not have much success. Anyway I have been given the option of Orbital Decompression Surgery as an
      agressive treatment for my GD Eye Disease. I have been told I could
      get by with lid surgery and the removal of fatty tissue but that it would
      not solve the problem of proptosis or assymetry (spelling?) . I must say
      for me, I am leaning towards the Orbital surgery though I know there are more risks involved. My Eye Dr. has been great and spent almost 2 hours with my husband and myself last night explaining the different procedures and even brought slides of past surgeries. He is not pushing me towards the more agressive treatment , if anything he much
      prefers the most conservative but he says it is up to me.
      I would be very interested in hearing what others with this Disease think or have experienced. Debby Jass has been very helpful with
      sharing her experience and I am searching for some of Jake’s old
      postings which explained his experience with the surgeries. I am going to make a decision within the next week or so , so any input would be greatly appreciated. Good Luck to All……. Julie T.

        Post count: 93172

        julie, orbital decompression surgury really is a big decision. i had the surgery about 6 years ago on both eyes as well as lid surgery to correct the retraction. though i still have big eyes,they are both more normal — it was the best thing for me. good luck with your decision. linda

          Post count: 93172

          Dear Julie: Just read your message about surgery, and I can only relate my daughter’s experiences. She initially had the eyelid/tissue removal done, and although she did look somewhat better, the eyeballs themselves were still bulging. She had the orbital decompression surgery at the Jules Stein Eye Clinic (UCLA Medical Center) in California, and the results were wonderful. Both of her eyes were measured at around “27”, and I have been told that the average “normal” eye is somewhere around 17-19. The surgery was difinitely well worth it for her. Her eyes now measure normal, and she looks great.

          Hope this information helps – Good Luck.


            Post count: 93172

            I am currently at home recovering from eyelid surgery and found this bulletin
            board, so I thought I’d share my experiences.

            I had the Orbital Decompression surgery last Sept. Though I had fairly
            significant symptoms for about a year, my doctor wouldn’t do the surgery
            until my eyes “stabilized” – I had some days which were much better than

            My symptoms included lots of tearing, red and irritated eyes, sensitivity
            to the sun and wind – and, for me the worst symptom, pain behind my eyes
            that felt like a headache in my eyes. Of course, my eyes bulged.

            The Orbital Decompression surgery was pretty tough in recovery, but after
            about a month I felt pretty good. And, the pressure behind my eyes
            was gone. So, for me, I’m very happy I did it. Before the surgery, I was
            taking Advil probably 3 – 4 times a week for the pain, and now I don’t
            have to. The bulging is reduced, but it’s still there. And, because my
            eyelids were retracted so much, I still looked pretty “bug-eyed”.

            I had the eyelid surgery last week. They’re still pretty swollen, but I
            can tell that my eyes definitely look better – the lids are down and the
            “bug eye” appearance is much better! However, right now they look uneven. The
            doctor said I may have to have another surgery to correct this, but of
            course right now it’s a little early to tell!

            So, I can tell you that I’m really happy I’m going through the surgeries –
            but they’re no fun! Make sure your doctor has had a lot of experience
            in doing these kinds of surgery – and good luck – whatever you decide!

            Jeanne J.

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