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  • Anonymous
      Post count: 93172

      Hi – was at my doctor on Tuesday. Bad news. They thought my eyes were getting better but in the last month have got much worse. Something must be done to stop the double vision and swelling from getting any worse. I will be going to the Cancer Clinic and having a mask made for my face then will have ten radiation treatments on the eyes in two weeks. Apparently about a month after treatment I might see a bit of an improvement and two to three months later will be asked to make a decision on a couple of operations. Decompression or just having my doublevision corrected but my “bug” look will stay the same. These radiation treatments don’t help the disease get better but they slow it down and prevent things from getting worse. I also have to be on Prednisone for a week before the treatments until about a month after, which I am not looking forward to as when I had it intervenously it made me feel very sick. Has anyone out there had these treatments? I live on the West Coast and the Specialist that I see and operates on many people all over Canada and the States uses these treatments a lot. It is just I don’t know anyone personally to ask about it. Thanks. SAS

      Anonymous
        Post count: 93172

        Hi Sass-

        Yes, I have had orbital irradiation. It does take the two weeks
        and the MOST rads they will give you is 2000cGy. It does NOT hurt. It
        will be a little embaressing after they “mark up” your face.(I do have
        very tiny tattoos left on my face) The GOOD NEWS is I was able to
        look left, right and up again. I will not tell you that it works on
        everyone, GD and GO has a mind of it’s own and SOMETIMES the path is a
        little long.
        I have also done chemo therapy, orbital decompression ( both eyes)
        and many upper and lower lid surgerys. ALL of it has been worth it! They
        say hindsight is 20/20, well, it is, I am very blessed.

        Anonymous
          Post count: 93172

          In most Orbital Irradiations they don’t use a tattoo anymore, they make the marks on the molded mask. If you look at my picture with the mask on at http://www.e-universe.com/brucewil/graves.htm you can just make out the target marks.

          The claimed success rate I hear for the treatment is 80%, I noticed a marked difference in my vision by the end of the two week session.

          Bruce

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