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  • Anonymous
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      I have had Graves Eye Disease for about 18 months. During that period of time my vision in my left eye has deteriorated to the point that I wear an eye patch all the time. My right eye is swollen, but I do not experience any problems with my vision in the right eye. My doctoers have been very vague as to any treatment and as of this point in time I have had none.

      My docter has talked about an orbital release, but she does not feel I am ready for it. She has also talked about strabismus surgery, but she said this can not be done until I have the orbital release. Next week I am to meet with a different docter he believes that perhaps botox injections will help.

      I have many questions and perhaps some one can share thier experience with me.

      How long does the disease normally last?

      How do you measure the progress of the disease?

      How do you know when it has run it’s course?

      Do you have to wait for both eyes to be bad before strbismus surgery?

      Is the botox a temporary fix or permanent?

      Is there a downside to the botox?

      Can I expect the right eye to get as bad as the left?

      Do prism glass help while the disease is in progress?

      I was told my my HMO that glasses are not covered, do prism glasses fall into the normal eyeglass area or are they treasted seperately?

      At this point I am not sure if I am caught in the Managed Health Car system or if the docters just do not have the experience. I am being treated in a very prestigious North Carolina Hospital. One thing I know is that I can not continue for another year, with my vision the way it is, without a game plan to improve it. This disease effects me, my family, and it is now beginning to effect my work.

      If anyone has any answers or if you would like to share your experience please let me know.



        Post count: 93172

        Hey Charlie,

        Boy, we are in the same boat. Where you going, Duke or Baptist? I’ve been to both. I’ve had the eye disease for 3-1/2 years and wore a patch for 3 years. I can’t answer your questions about Botox. Usually the eye disease takes about 2 to 3 yrs. to burn out. So, get ready for a long ride. The working part is really hard, but I am in customer service and look at a computer all day, and paperwork, etc. I’ve managed to do my job during all of this and my manager has not cut me ANY slack. (I don’t like my manager so much anymore – jeez nobody understands what we are going through!)

        I didn’t have orbital decompression. My double vision is severe, though, and have gone thru 2 muscle surgeries with some improvement. My eyes are almost always irritated, still, and I’m supposedly finished with the “burn-out”. My cousin still has problems with her eyes 18 years after RAI. ISN’T THAT SCARY! I think the worst thing is having to face up to the fact that we are basically screwed (I blame RAI).

        Best thing to do is take it one day at a time and get the best treatment you can from your doctors. Don’t expect sympathy, because I’ve found that we probably won’t get it. Try not to feel too sorry for yourself – heck there’s a lot of people worse off.

        Oh yes, my insurance paid for the prisms. They just stick it on your glasses. After your surgeries, if you still need a prism, they actually grind it into your glasses permanently.

        Good Luck,

          Post count: 93172

          I cannot answer all of your questions, Charlie, but I’ll try to respond to the ones that I can.

          First off, it is not at all unusual for us not to get any type of treatment for the eye disease. It is not necessarily your managed care situation, as much as it is the nature of the eye disease beast. The eye disease is caused by antibody action, and at this point in time medical science simply does not know how to counteract the antibodies without jeapardizing the entire immune system, and suppressing the immune system comes with a host of complications. The treatments available to counteract the EFFECTS of the antibody attack on the eye muscles have severe side effect possibilities, so doctors carefully weight the degree of severity of the eye disease they can determine against the side effect issues of the treatments. For most of us, even if we get severe strabismus/double vision, that means that there is no medical intervention until after things have cooled off. It is only when the optic nerve is threatened that doctors typically will intervene with any of the treatments during the “hot” phase. And most of us do not have our optic nerve jeapardized, thank goodness.

          Waiting until the eye disease has run it’s course is important too, because doctors know that when the antibody attack abates, our eyes usually improve a bit. They may not become completely normal, but there is usually some improvement. Any surgical corrections for your double vision, for instance, that corrected things for “now”, might be undone once the disease has quieted down and your eye muscles are no longer being enflamed. So, you would need two surgeries, the second to correct the over-correction of the first. Our doctors think it is more prudent to wait, especially with surgeries, unless the eye disease is so extreme that we could actually lose our vision. It is frustrating, I know: I spent many long months terrified, and untrusting. But I also learned that the eyes DO improve after the antibody attack abates.

          How long the disease lasts? It varies from one person to the next. I’ve seen numbers for the “hot” phase that run anywhere from 18 months to three years or so. Generally speaking, it seems to be about a year and a half, but in some individuals it is longer. Remember, though, that the disease is caused by antibodies, and these (while they do not usually cause additional trouble later on) never truly go away.

          You probably don’t have to wait for both eyes, in the sense I think you mean. It isn’t at all uncommmon for the eye disease to affect one eye more than the other, who knows why. You HAVE the eye disease. Both eyes are probably impacted. But one of them may not have quite the same severe changes that the other eye does.

          I don’t know much about botox vis-a-vis this disease. There is, however, a radio personality on NPR who gets botox injections for a neurological problem of the vocal chords, and the “fix” is temporary. I don’t know whether that is due to the nature of her illness, as compared with ours, or due to the nature of the botox, but I suspect it is the latter situation. You should ask your doctor the botox questions, because it is not something that most of us with the eye disease have experienced as a treatment.

          Prisms can help a lot. There are a temporary kind that can be put right over your normal glasses lens’, for when there are a lot of changes going on. And if the disease has run its course, you can get permanent ones. I don’t know if prisms are covered under your HMO. Different HMOs will have different rules. I kind of doubt that they would be covered (my HMO — which I recently quit — didn’t even see the need for ophthomologists…..) but it will vary so you need to check the rules of your particular HMO.

          I hope this helps,
          Bobbi — NGDF Asst. Online Facilitator

            Post count: 93172

            To Bobbie== Being new to the BB — can you tell me what is the hot phase/cold phase–Thank you== Corkey

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