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  • Anonymous
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      After several attempts (server kept returning back to me), I’ve just sent an e-mail to you regarding your inquiry about orbital radiation. Let me know if you’ve gotten it ok. Thanks


        Post count: 93172

        Hi Denise – I finished my orbital irradiation treatments in early April. There are ten treatments – ten working days in a row. The first appointment is longer as they will make a mask for your face. After that they are only 10 to 15 minutes per session. What takes the time is all the measuring each time to make sure they have the correct spot to radiate. I had three people working on me each time. The sides of my mask were heavy plastic which meant when you were lying on the table, a bolt would be screwed through the sides of the mask, securing it to the table to prevent your head from moving. Apparently this is the most up to date way of doing the treatments. The markings can be made on the mask instead of on your face. I have my mask at home as they gave it to me – as if I needed a reminder of my treatments!! It will be great for some costume party tho – it looks like a fencing mask. There is no pain involved however I was told I could be very tired during these few weeks and I was. As to whether they work – I just had a followup appointment today and my eye surgeon is very pleased. He feels that the disease is slowing down and probably stopping. I still have double vision and weepy eyes that hurt on bright days but all these things will be taken care of down the road. I would go for it. To me it was less bothering than the steroid intravenous treatments I had – but then I have a real terror of needles. From the way my Doctors talked today it will probably be close to a year before my three operations are over and I am back to normal. I am just resigning myself to that fact and am glad for the fact I have this wonderful board to receive both knowledge and support in the meantime. If I can be of any more help e-mail me. Best to you. SAS

          Post count: 93172

          I know I can count on my fellow graves consultant’s to
          answer my questions about radiation eye treatments for the
          optic nerve. Badically, is the procedure a laser? Does
          there have any pain involvment? How do they determine how
          much to receive and for how long does the treatments take?

          I am in the queryin stages right now if I need to go this
          route as my last effort to save the sight in my right eye.
          I have heard pros and cons. Hopefuly I do not need this and
          my plasmaphoresis and immuno drugs will subside this
          dreadful eye disease. I have had diabetes for 32 years no
          major complications and within the last year have had more
          trouble with this thyroid disease I would have ever
          imagined. This support group has been wonderful and eveyone
          should be ral proud of what they have to offer other in the
          way of support, addvice and shoulders to cry on!

          Anyone can reach me at my new address- ddonohue@webt,net


            Post count: 93172

            I think I posted this somewhere before, but it could have been in an E-Mail. I had the eye radiation done in Dec ’96. I had 10 sessions at 15 seconds for each eye. Before the treatments started, they had me lay on a table and be completely still for about an hour while they fitted me with a mask that would help them pinpoint the exact area that would be irradiated. They took x-rays and I had to have a CAT scan done before the fitting and after the fitting (with the mask on). That was the hardest part. Other than a minor headache and being tired after the last treatments, all went well. My eyes seem to be getting better. In the middle of June, I will have eyelid surgery to correct that problem that was caused by the Grave’s proptosis. Now that the left eye has improved, my lid still is open too wide. So, that surgery is ahead of me. Thank you for the information on the plasmaphoresis. Is this a blood transplant? That is what it sounds like. Hope all is going well for you and I hope the treatment you are receiving solves your eye problems. I’ll keep you in my prayers.
            All my best,

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