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  • Anonymous
      Post count: 93172

      Hi Mom, just read your post. It was a year after RAI that I started to have symptoms with my eyes. Drops and pillows were suggested to me to help lessen the pain and tearing BUT I was also given a CT scan to see how far the disease had progressed. From there I had steroid through intravenous treatments, radiation last April and just had orbital decompression a month ago.

      Your daughter’s eyes MAY NOT go the same route mine have but I hope her Ophthalmologist is well versed in Graves Eye Disease and following her closely. My Dr. is well known and I have every confidence in him but if that had not been the case I certainly would have been getting a second opinion.

      Maybe you should tell you daughter about this BB if she has access to internet. There are a lot of links with excellent information as well as some informative posts about Graves Eye disease. It is important to read with an open mind. All symptoms, treatments and recoveries can be a little different. The worst does not happen to everybody but it helps to be well read and have good communication with your doctors.

      Good luck.

      Anonymous
        Post count: 93172

        I was just diagnosed a few weeks ago. My doctor said the graves eyes and the development
        of the eyes has nothing to do with the type to treatment you use for
        the graves disease.

        The eyes can get worse or not get worse. No way of telling.

        what type of OTC did you get?

        lynn

        Anonymous
          Post count: 93172

          I am newly diagnosed with GD and I have had no indication that I will have trouble with my eyes. However, I have been reading as much as possible on this BB and have seen several people indicate that seeing an opthomoligist would be a good idea. I’ll have to request a referral from my primary care physician, but I was wondering, what type of test would I request? Thanks.

          Anonymous
            Post count: 93172

            Hi,

            The problem with the eye disease is that the doctors have no way of knowing 1) who, with Graves, will get it, or 2) if you get it, how bad it will be. The treatments available for it are rather prone to nasty side effects. If the disease gets too bad, they can put us on steroids (with all the potential complications those drugs have). There is also the possibility of having several (I think the number is about 10) sessions with low-dose radiation beamed at the muscles of the eyes. As my ophthamologist told me, the possible side effects from that can involve extremely dry eyes, cattaracts, and glaucoma, among other things. There is also the fact that having the steroids and radiation is no guarantee that things still won’t get worse. So the doctors like to wait before starting these treatments, until they are medically necessary.

            There are also surgeries that can be done, but these are not contemplated until the eye disease has stabilized. The changes WILL stop at some point; they might even ease up a bit. But that can take a while. But there is no point in doing surgery, some of which is massive, if the disease is still active, with changes still occurring UNLESS your daughter’s sight becomes jeapardized.

            Right now, your daughter’s ophthamologist is doing exactly the same thing as mine is — waiting and watching. The OTC drops are helping to protect her cornea from drying out too much, given the extra exposure that the bulging produces. (The disease also changes our tear duct discharge making it less effective.) Elevating her head at night, helps to keep the swelling of the muscles and soft tissues at a lower level. I know it isn’t much, but given the alternative treatments, I understand the need for caution.

            I don’t know if this is much help, but it sounds like your daughter’s ophthamologist is doing what the majority of ophthamologists currently recommend. There are a few who are advocating early intervention with the radiation, but it has yet to be proven that early intervention makes much of a difference, and my ophthamologist will NOT do it unless it is necessary, due to the potential side effects.

            Take care,

            Bobbi

            Anonymous
              Post count: 93172

              My oldest daughter, 30, has graves disease and was treated with RAI
              about 1 year ago. Over the holidays, (she lives out of state), I
              noticed how bad her eyes looked. My husband and I are very
              concerned about her. She claims she has been to an eye specialist
              and they just told her to use OTC drops and to elevate her pillows
              at night. Is this the normal treatment? My daughter who always had
              big beautiful blue eyes now has eyes that are starting to bulge.
              The right eye more prominent than the left. My daughter feels the doctor’s
              know what they are talking about and are using “the wait and see approach.”

              Even though my daughter lives away from home I am still concerned
              about her and the treatment she is getting. I would like to hear
              from others who have the graves eye disease and your treatments.

              Concerned Mom in TN

              Anonymous
                Post count: 93172

                I’ve been off the board for a while and just in-put when I think I can help with RECENT eye disease.The wait and see approach is the way most Ophthomologists have been taught to deal with this problem.High doses of Prednesone will help to keep it stable, but most people can’t take it for any length of time. Once off Prednesone the only recourse is to go through the “hot phase”.That means watching the eyes get progressively worse until it stops.It also means the muscles are getting more inflamed, scar tissue forming, eyelids retracting,bulging.The only way to stop the progression is with radiation to the eyes. It does not cure. It stops it from getting worse. My radiologist has done 50 this year and has had*NONE* of the mentioned side-effects. there is some tearing in the AM and sensitivity to light,but any problems usually go away in a couple of weeks. Radiation is what saved me from bulging,from much worse double vision,from bad retracting lids and a build-up of scar tissue making future surgery more dificult than necessary.The problem with radiation is finding a radiologist who is proficient and experienced at doing the treatments.It is a fairly new idea to treat the eyes in the begining. But it makes sense when you think about it. Once the eyes are in real trouble, everything becomes more difficult. Then they use radiation, but by then there are a whole bunch of problems to deal with. I caught my eye problems only 4 months after starting to see double. I was on the brink of protruding and was starting,but it couldn’t be seen yet. A cat scan revealed how swollen my muscles were. One lid was retracting. Since the radiation stopped the progression, my surgeon had an easy time with the eyelid. In a half hour in her office, my eyelid was fixed and now is normal. The double vision usually doesn’t get better,but in my case it has. Since it was so early the muscles were able to get back to a more normal position.Now the up and down muscles are OK just the side-to-side muscles will need work. The eyes went back to a normal position as soon as the swelling went down in the muscles. I have no bulging. So the only surgery I need is the double vision, made easier because there is no scar tissue and just one set of muscles to deal with.I want to be clear that this is a good case scenario. it’s not always this easy.But I understand now from listening to those on the BB who have gone through years of heartache and talking with both the surgeon and radiologist that radiation to the eyes *in the early stages* works. The first thing one should do in the early stages is find an Orbital specialist or good Otphtomoligist and get a base line exam. Anyone interested in knowing more about radiation treatments feel free to Email. Sorry to be so wordy. I care……Gwen

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