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  • Anonymous
      Post count: 93172

      HELP. I had decompression surgery 2 weeks ago. The surgeon said I should get around 4mm of change. However, I so far see no change. I have had so many eye surgeries and I do not think I can take another disappointment.
      Please, anyone who has had this surgery, how long before you saw a change? Is 4 mm even enough change to see anyway? Thanks for any response.

      Anonymous
        Post count: 93172

        Dear Millie,

        Sorry to read re your need for eye decompression surgery. I feel that this may be reommended for me in the future. I seem to have moderately severe Graves Eye Disease which was just diagnosed about 8 months ago, but which become increasingly severe in May — to the point that I was in danger of losing my vision in my left eye. I had to receive 9 separate IV infusions of a very high dose of SoluMedrol — a steroid and am now taking a high dose of oral Prednisone tapered over about a 3 month period. My blurry vision has returned despite the steroids, so I am discourage. The eye MD stated he may consider radiation treatments to the eyes if the steroid treatments fail — and possibly the decompression surgery. Did you receive the steroid and radiation treatments prior to your eye surgery? Did your Endo MD advise RAI or a thyroidectomy? I’ve very apprehensive re my prognosis and treatment. I’m not a young person —being 66 years old and have other medical problems. I admire you for your courage having the eye surgery. I’d be very happy to hear back from you as to whether the eye surgery was done after the other treatments were tried and failed. Hope you notice improvement. Thanks in advance for reading this and your response. Please excuse any spelling errors but my vision is blurry today. Nina

        Anonymous
          Post count: 93172

          Hello Nina. I am so sorry to hear that this disease has affected your vision. I can only hope you have a doctor that you can trust.
          I found out that I had Graves almost 4 years ago. My endo recommended that I have a thyroidectomy because he was afraid that RAI would worsen my eye condition. Since then I have had several eye surgeries trying to help me look like myself again. I was really hoping this last surgery would mak a difference. I guess I will have to wait and see.
          Thank you for responding.

          Anonymous
            Post count: 93172

            Hello and welcome to the NGDF Bulletin board,

            I too had a number of eye surgeries including the orbital decompressions. It takes time for the swelling to go away and the eyes to settle in their new positions.

            By about six weeks your eyes will be settled in and then you and your doctor should be able to see a marked improvement in the retraction of the eyes.

            Jake George
            On-Line Facilitator
            Co-Author “Graves’ Disease in Our Own Words”

            Anonymous
              Post count: 93172

              Thank you for replying. I guess I just thought I would see some change by now. Maybe 4mm is not that much to see. Oh well. I will just have to wait and see.

              Anonymous
                Post count: 93172

                Dear Millie,
                Thank you so much for your response to my message re the decompression surgery. Did you ever have to receive steroids for your eye condition? I’m a bit discouraged as my symptoms seem to be redeveloping even though I’m on a high and slow tapering dose of oral Prednisone. I just started to take 50 mg q day and will do so for 14 days, but, already, my blurry vision has returned, some swelling, and some discomfort


                nothing like it was in mid May before I received the 9 infusions of 1000 mg of SoluMedrol. The eye MD hinted that he may recommend radiation treatment to the eyes if the steroids didn’t help. I saw my Endo MD last Friday, and he wants to treat me conservatively hoping that the eye disease will “burn itself out” so RAI or a thyroidectomy won’t be needed.
                I sincerely hope the decompression surgery you had will– in time — bring the results you want. Thank you again for your response and expression of understanding. Nina

                Anonymous
                  Post count: 93172

                  Hi Nina,

                  I’m sorry that your symptoms seem to be coming back ~ the eye disease is NO fun. I hope that you find something that works to give you relief.

                  I just wanted to point out that resolving your eye disease issues would not preclude the need to treat your thyroid disease. They’re separate. Treating one does not treat the other. RAI can aggravate the eye symptoms, but it doesn’t cause (or resolve) the eye disease. A thyroidectomy would have absolutely no effect on your eyes. It would only treat your thyroid.

                  ~Ski
                  NGDF Assistant Online Facilitator

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