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  • Anonymous
      Post count: 93172

      Hi TS :)

      I haven’t had the surgery but had radiation treatment about 3 1/2 yrs ago. I was legally blind with this for a while and the good news is that my eyesight is now close to 20/20. After a total of four years the eyes are still improving, although there has been some damage so it will always be a bit “wierd”.

      Getting off the prednisone takes time and you can get a bit nutso doing it so do take it slow. If the sight deteriorates your doc may have to go back up on the dose. I yo yo’d up and down for quite a while (about 1 1/2 yrs) but the last blast of the stuff really did the job.

      I also had lots of the side affects. It seemed like it took several months afterwards for my adrenaline to quit going crazy sometimes.

      I so far haven’t had much trouble with my thyroid. It was slightly hyper only for a month or so at the beginning so nothing has been done with it.

      E-mail me if you’d like to talk more about it. You will pobably hear from Jake, his was quite similar to yours. Go to Dianne’s page at http://netnow.micron.net/deecee and you can read our stories. Better yet, add yours to it!

      Bruce

      Anonymous
        Post count: 93172

        Hi TS! Welcome to the BB! I feel for you – I went through decompression surgery 3 years ago. My doctors did eye muscle surgery for my double vision 6 weeks after decompression. I wonder why yours is waiting? I also had lid retraction done on both eyes after the second surgery to help my lids close completely. It was a long road to travel on, but my eyes look near “normal” and my vision is the same as it was before this GD “journey.” By the way, I wasn’t on steriods after decompression. Best of luck to you! For more info check out:

        http://www.mayo.edu/Mayo_Ophtho/Graves_info.html

        Happy New Year! Debby

        Anonymous
          Post count: 93172

          I have been “eavesdropping” on this bulletin board and have found it
          very helpful. I have some questions for eye Graves sufferers. For
          context, I outline the basics of my “case” (for what it is worth) at
          the end of this message.

          1. I am currently recuperating from orbital decompression surgery
          (which also involved the removal of some fatty connective tissue
          from the optic nerve directly). My surgeon believes it has been a
          great success and will continue to improve as I am phased down on
          my steroids, the tissues heal and the muscles have more play. My
          vision is in some ways better than it has been for months (ie, in
          terms of processing light and contrasts in particular), but is also
          somewhat blurry and double (latter to be corrected down the line).
          It is at least functional and I know I should be grateful. But no one
          can guarantee what I’ll end up with. I’m finding it difficult having to
          wait months to find out if I’ll be able to see as I used to (my job is
          demanding and involves a lot of reading and close computer work).
          Any tips on how to deal with the uncertainty of this disease? On a
          more practical level, how do you know once your situation has
          stabilized? Is there anything one can do to lessen the chance of a
          flare up?

          2. Prednisone phase down: Would appreciate hearing about
          peoples’ experiences phasing down on prednisone and how long it
          took to shake accrued side effects. How does phasing down affect
          the quality of vision after surgery?

          My case: GD for 5 months; eye was first symptom of hyperthyroid;
          thyroid simply “shut off” for now with PTU in order to protect eye
          from any antibody feedback from the thyroid (am taking thyroid
          hormone replacement); placed on steroids for 2 months for eye but
          never achieved full visual field (so decompression preferred over
          radiation as an option). Recuperating nicely. Trying to be positive
          (but OK, I admit I’m finding it a little tough — surprisingly more so
          after the operation than before when I kept myself very busy).

          Anonymous
            Post count: 93172

            Hi Debbie, Happy New Year! Because of my double vision I have not been keeping up on this board. My husband reads as much as he can to try and keep me informed. Today I am very depressed. I couldn’t go to work because I work on computer and my vision seems to be getting worse. As I don’t get paid when I am not there that also adds to the stress. You seem to have been through what I will be going thru. I did have one eyelid done eight years ago and I thought things were finished. No such luck. My thyroid came back High, High, High two years ago. I had the RAI but now they say they are going to do it again. I have a call into my specialist but they are closed until Mon 6th. I have asked for an appointment ASAP so I can find out where I stand about going back to work. One of the worst things is the not sleeping. Feeling tired and having no energy does not help the situation. I was told in January I would be going for ten treatments of Radiation at the Cancer Clinic before he discussed the next step. We went to see the Three Tenors on New Years Eve and I saw Six Tenors!! Don’t know if that was good or bad! Anyway you people give me hope – just to be able to converse with people who have walked the walk helps. Thanks. SAS

            Anonymous
              Post count: 93172

              SAS,

              Try an eye patch. I always carry one with me in my briefcase or backpack.
              When ddouble vision pupos up it’s ugly little head I patch the sucker. Kind
              of makes you feel alike a pirate. Give it a try. I patch a work quite often
              to work on the computer. I switch the patch form eye to eye every half
              hour or so to cut down on the eye strain.

              Jake

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