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  • Anonymous
      Post count: 93172

      Hi Everyone,
      It’s been a couple months since I’ve written —was sorry Iwasn’t able to attend the conference, but hope to do so next year. I was diagnosed with severe Graves Eye Disease about a year ago and was advised to have the decompression surgery this past July. My eye MD agreed to let me try orbital radiation because of my fear of the eye surgery. The radiation treatments seem to have helped as my eyes are much better —- but perhaps I just came out of the “hot phase”. I’ve been on steroids since May, 2007 === initially I received massive doses of IV steroids, but am now taking 10 mg q day of Prednisone. Next week I’ll start on 7.5 mg for 2 weeks. I now have a fear of coming off the steroids completely.
      My endocrinologist is now recommending that I have a thyroidectomy in the next month or so. I do have a rapid heart rate at times and have other mild symptoms. I’m fearful of the thyroidectomy also — because of my age of 67 and my moderately severe COPD. I’ve been reassured that most patients don’t experience any surgical complications such as bleeding, permanent damage to the vocal cords, etc. I would be most appreciative if those of you who’ve had a thyroidectomy could share your experience with me. My intuitive feelings are telling me not to have the surgery at this time, but I’m aware that I may be taking a chance in postponing it. I’m tentatively scheduled to have the surgery on 12/4/2007. Thanks much for reading this. Nina

      Anonymous
        Post count: 93172

        Hi, Nina:

        I cannot provide an experienced view of the thyroid surgery, because I was able to do a different treatment. That said, I understand completely your fear of the surgery: had I been told that I needed the surgery, I would have had to listen very, very hard to everything that my doctor told me about why it was necessary. I am afraid of surgeries in general.

        But I did have a surgery a few years ago to remove a bad gall bladder. I did not want it; I almost left the pre-op room to head home without it (had my husband not intervened, I likely would have left). But it made me well again, with none of my feared consequences. I even felt a little silly, after the fact, looking at how stressed out I had allowed myself to become over fears that had little or no basis in the reality I experienced.

        There are some of us for whom surgery is the best, the safest way to get well again from the effects of Graves. You might well be one of those people, Nina. You need to talk with your doctor, and list very hard to what is being said. Get a second opinion, if it would make you feel better. But try very hard to separate fear from reality: that is your best way of getting well again.

        I do wish you good luck, and better health soon.
        Bobbi — NGDF Online Facilitator

        Anonymous
          Post count: 93172

          Nina, I know a number of people who have had a thyroidectomy and are happy. I will try to see if I can find some to write a current post about their personal experience.

          It’s interesting how different we all are about our fears. Bobbi says she is afraid of surgery, and I have no fear at all, after having over 25 surgeries in the last 15 years. I probably should stop and consider the possible complications more than I do (especially since I have experience with complications) but I don’t worry.

          I think the fear of the unknown is what we tend to worry about the most. Information and experience are the most helpful factors for mitigating that. Before my first surgery I remember those thoughts of pain and death, and those thoughts of all that could happen consumed me for weeks beforehand. Now I hardly even think about my upcoming surgery until the morning I have to get up earlier than usual and face the inconvenience of not being able to eat breakfast.

          There are other considerations of course, more important ones, that should be discussed with a good thyroid surgeon. My understanding is that you should do this surgery only with a very experienced surgeon who does this surgery regularly and has a low complication rate. Different surgeons have different ideas about how much of the thyroid gland should be left to make sure your hyperthyroidism will be controlled without adding to the risk of damage to your vocal cords or parathyroid glands. I’d want to hear different ideas on that and make up my mind what I thought was the best option for me there. There can be a balance between trying to leave some of your thyroid so you might not need replacement hormone, but you might end up hyperthyroid again. Most surgeons these days want to avoid that. I have two friends that happened to.

          If I were having this surgery for myself and my insurance allowed some freedom of choice, I would even travel to a large center where thyroid surgery was a routine procedure if I didn’t live in an area where it was. I would ask about a particular surgeon’s complication rate. I would expect it to be ideally 1%, which is very good for this surgery. If it was much higher I would keep looking for another surgeon.

          The people I’ve known who had thyroid surgery were relieved of their hyperthyroidism quickly and if thyroid replacement was needed, they were usually able to get the dose adjusted within a few months, since there is no continual destructive process going on as with RAI. On the whole they’ve been very pleased with their choice to have surgery.

          Best wishes in your choices.

          Dianne W—Online Facilitator

          Anonymous
            Post count: 93172

            Hi Nina,

            Dianne Wiley asked me to tell you about my experience with thyroidectomy. I had it done in 2003 by a very experienced thyroid surgeon, and I did very well. I had developed an autoimmune attack called scleritis in my right eye a few months prior to the surgery. Scleritis is an inflammation of the deep blood vessels of the white part of the eye. I had been on PTU for five years following my diagnosis of Graves’ Disease in 1998, and the scleritis may have been a very rare side effect of the PTU according to the rheumatologists I consulted. My thyroid eye disease was minimal all along, but because of the scleritis, the thyroid surgeon thought thyroidectomy was the way to go. I was 58 at the time of the thyroidectomy. Currently I am almost 63 and doing very well.

            The surgery itself went very well for me. I spent one night afterward in the hospital and went home the next day. I had very little pain. The doctor thought it was safe for me to start on thyroid hormone replacement right away, and it took two adjustments of hormone replacement dosage in the next two years to find the right level. I immediately felt better once my sick thyroid gland was removed. I am really glad I had it done.

            If I can answer any questions for you, please let me know.

            Carole Johnson
            NGDF Newsletter Editor

            Anonymous
              Post count: 93172

              This is my first posting. I was diagnosised with Graves Disease in June by my opthamologist, after misdiagnosis by my regular eye doctor, and my family doctor. I feel very fortunate that I was able to attend the conference in Cincinnati. My husband and I met alot of wonderful people and felt that we gained alot of additional knowledge that will help me in dealing with this chronic disease.

              I am scheduled to have a thyroidectomy on Friday, November 30. I will post as soon as possible after the surgery to let you know how it went. I am also suppose to have occular radiation therapy after the surgery. I am not sure just when that will be.

              Anonymous
                Post count: 93172

                Jackie, it was a pleasure meeting you at the conference, and I wish you all the best for your surgery. My thoughts and prayers will be with you.

                Yes, please do post as soon as you are well enough and let us know how you are doing!

                Dianne W

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