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  • Anonymous
      Post count: 93172

      Hi, Rachel! Sorry I’m a slowpoke – school’s started and my schedule’s full! I heard about orbital decompression from my first appointment in ’90. Through the years, my doctors at Mayo always reminded me of the options with each visit, but they used the words “option” and “if you choose.” I figured that surgery was my last resort. With my visit in 93, previous photos and measurements told the doctors that things were getting worse. They STRONGLY recommended surgery, and I finally opted for the knife. I’ll never regret that decision. My eyes will never be the same, but the poppiness is gone. What made me finally decide for surgery? Fear of my eyes getting even worse and complete trust in my doctors, I guess. Now I realize how serious orbital decompression can be, but I knew this wasn’t Mayo’s first time doing it either. Eye muscle surgery and lid retraction followed – they were easy compared to the other.
      My delays in making a decision for surgery only strengthened the need to try to get back to “normal.” Nothing is taken lightly here. Today I’m convinced that I’ll always have sore and red eyes in the morning, which I’ll take any day over the buggy look!
      Best of luck and keep in touch!

        Post count: 93172

        Thanks to all who responded to my RAI question. I met with the endo today and spent about an hour in his office discussing the choices that were left. PTU or RAI? His feeling was that with the way my levels returned after being off Tapazole for a week and the fact that I had an allergic reaction, that PTU wasn’t really a good option. It seems that my system is really cranked up and given my age and history, the hope for remission is not great. He felt that The RAI would solve the problem with the least possibility of complications. I have the weekend to think about it, but have pretty much decided to go with the RAI. It was not fun going through the allergic reaction to Tapazole and the possibility of remission is not great enough for me to want to take the risk with PTU. Will let you all know how I make out next week. Seems like three days of RAIU tests and then the dosage on Thursday. Thanks for the info and the support.

          Post count: 93172

          I am trying to decide whether or not to have RAI now, or wait another
          2-6 months. My Endo (who is very patient, understanding, and infor-
          mative!!!) has given me the choice. He says the only reason you use
          Tapazole is to control the GD until it goes into remission. This usually
          occurs 12-18 months after therapy has begun. In some cases, there is no
          remission, in which case, he will do RAI. It looks doubtful that i will go into
          remission, so I am trying to decide whether to give myself a little more time, or get it
          done and be done with it. He is extremely confident about the treatment,
          and understands all of my frustrations(especially those about excess weight!).
          Any comments or suggestions? Also, one thing I forgot to ask him,
          what is thyroid storm?

            Post count: 93172

            Dear Lesli, there may be good reason for you to chose RAI, but if
            your doctor is saying that Tapazole is only used to prepare for RAI
            he (she) has already made a decision for you. I hope you read my
            previous post about treatment preferences differing in different
            countries. I think that all the treatments require patience.
            Perhaps more patience is required to try for remission through
            antiT drugs. I don’t know, I read the RAI stories and
            I am amazed at what people press on through. Sometimes our confidence is
            one of the important ingredients in our healing…maybe a 2nd opinion
            would help you get into a position where you feel able to weigh all
            the variables( which are many and complicated) and decide with your
            medical team in concert.
            I had outrageously high lab reports and take only 10mg of Tap
            which is bringing the levels down quite smoothly. We all seem to
            respond differently to the disease and the treatment. If you want
            to talk more e-mail me. Best wishes to you. Jeannette

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