[Ski]

#1067662

I presume you’re talking about radiotherapy to the orbit of the eye (directed radiation into the orbital cavity)? I do know many people here have had this procedure done (though I’m not one of them) ~ there was a recent thread where Nancy Patterson said she used to collect stories about what people had done with their "masks" (used to make sure each treatment is directed to the same precise point).

Again, this treatment for thyroid eye disease was just discussed at the conference, and the doctor speaking on the topic mentioned that the results may be seen over a length of time ~ in other words, you may be finished with all ten treatments, and yet see results weeks or even months later. Have you gotten any relief yet?

[Blessings]

#1018886

Has any one had radiotherapy aka radiation therapy. I am into my third of ten radiation treatments?
Thanks.

[bradybunch6x1]

#1067663

I had radiation on my orbits. I can say one thing about that treatment, it didn’t make me look better, but it did seem to help stop the progression of my eyes bugging out. I also had to continue on steriods for almost another year after that treatment. I did really well with the radiation, but developed an infection in one of my eyes right after the last treatment. I went from the treatment to the eye doctor, because my eye lid was drooping, and was on fire(different kind of burn than from the TED). I was given antibiotic eye gel, and poof three days later, it was gone.
Did they measure the protusion of your eyes? My doc did before and after, with almost no change, I think it was like a millimetter change.
Valarie

[Blessings]

#1067664

Yes, I’m now on the sixth day of radiotherapy (orbital). A mask was made to cover my face/eyes prior to the treatment(s). I’m told there’s a 50/50 success rate and yes, it will probably be weeks before I notice any significant changes. However, my endocrinologist mentioned that it might not do anything for my high levels of antibodies for which I have been placed back on methimazole for. It does feel as though my eyel are not as "poppy". I did have my eyes measured by the neuro-opthalmologist earlier this month. Won’t know if there is any real decrease in the eye protrusion until six weeks after the last radiation treatment. I still don’t look any better, though. I’m just hoping that there is no further vision loss. Eyes are itchy at times. I wish I could have attended the conference. I know it was very informative.

[bradybunch6x1]

#1067665

The antibodies that were active during my treatment of radiation were still very elevated during and after that time. I started to develope issues with pretibial myxedem right after that, and it continues to this day. I’m very thankful that it stopped attacking my eyes, as I didn’t want to go blind. I would much rather have issues on my legs, that I can cover with pants(I was so vain when I was younger, as I always thought some of my good qualaties was my legs(which are ugly now)and my face(which I can’t stand to look at now because of the bug eyed look). I have had so many issues with surgeries that I have not proceeded with any type of surgical treatment, and honestly don’t think I will unless I start to go blind. Have you given any thought to having the surgeries?
Valarie

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