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  • Anonymous
      Post count: 93172

      Hi Nina,

      There are posts here from people who have had radiation to the eyes, and for some it has provided relief. Do a search on “radiation” and “eyes” and maybe you can come up with a comprehensive set of posts with experiential information. I never needed it, so I can’t tell you anything that I know for a certainty.

      The only caveat I know of is that radiation treatments can “stiffen” the tissues in some cases, which could result in less of a benefit from a subsequent decompression surgery (the tissues may not “settle” so easily into the new socket). I’m not sure if that has been addressed in more recent radiation treatments.

      As far as operating on “hot” eyes, it is typically not recommended, but if the eyes are in danger, it may be your best alternative. Unfortunately, it’s hard to know ahead of time, but do some research and have some frank discussions with your eye doctor. Going in as informed as possible is truly the best thing.

      The only thing I can suggest to “improve” things is to find ways to lessen your stress levels. The antibodies are stimulated by adrenaline, which is released when you are stressed. Keeping your stress levels down CAN help. Still, don’t label yourself a failure if the symptoms persist. No one really understands why the symptoms come and go, but there are some “tendencies,” if you follow my meaning.

      Food/nutrition really has no impact.

      ANYTHING that will help you to relax is a good thing, no matter what. Feed your soul.

      Let us know what you decide!

      ~Ski
      NGDF Assistant Online Facilitator

      Anonymous
        Post count: 93172

        Dear Bobbie, Ski, Millie, and fellow TED patients,
        Initially the massive IV infusions of steroids controlled my eye symptoms, but they seem to be reappearing since I’m now on a long, tapering oral Prednisone regime. The eye MD told me today that either radiation to the eyes or decompression surgery would be the next treatment that he would recommend, as he doesn’t want me to continue on the steroids indefinitely, especially since my symptoms seem to be returning. Both options sound very frightening to me —expecially the surgery. Even the eyeMD commented that he usually doesn’t like to operate on “hot eyes”. Have any of you received radiation treatments for your TED and, if so, were they helpful and did you experience side effects? My next appointment is in mid July === I guess I’m praying for a miracle === that is that my “hot phase” burns itself out naturally, so no further treatment would be needed. I know realistically that this might not happen by July. Any advice that you could give me would be greatly appreciated. Are there any nutritional considerations that might help? Thanks for reading this.
        Nina

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