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  • Anonymous
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    I’ve been at the beach,so I’m behind on the BB. Can someone send me the report? Thanks…. I had my check-up on thursday and since the Radiation therapy, my eyes are doing what is expected.The swelling is going down.The pressure is better. the retracting eye lid will be fixed Oct. 23.I asked the radiologist alot of questions that some of you asked me. Radiation will make the swelling and inflamation to the muscles behind the eyes go away.Someone asked about the cat=scan with regards to seeing the inflamation and yes it can show the swollen muscles and the “fatty type deposits” that will look like dirty spots on the cat-scan. Radiation should be 10 treatments to the side of the head.Now this is if both eyes are affected. I asked Why 10 treatments? Doi some get 8 or 12 or 11? I was told that 10 was the number found to work.I’m sure there are some individual situations that have come up. He said that when the radiation is done straight on,that eye problems can occur, He just did his own study of 100 patients.Not one had a problem after radiation!!he said he would be glad to talk to any one about the treatments and consult with your Doctors. About Diabetes- there is almost no information.He knows of an obscure paper form an obscure country, that doesn’t help. There’s a study from the U. of VA. He’s done 2 diabetics with no problem. But he cautions that it’s possible it can make the Diabetes worse and you need to be monitored closely. Steroids are a problem. It can make the Diabetes uncontrollable. If you have the early stages of puffiness, double vision, protruding or retracting eyelids, radiation to the eyes will stop the progression.It gets rid of the inflamation. they don’t know where the anti-bodies go,but they go away from the eyes.You do not have to wait years for the “hot stage” to pass.If there is scaring, it makes it more difficult,but it has been done sucessfully in alot of cases.As the swelling in the muscles begin to ease up, the puffiness goes down and the protruding can ease up a bit. This treatment is not a cure. It stops it from getting worse. When your eyes settle down in about 6 months, then corrective surgery can be done. On Oct. 23rd, I’m getting my retracting eyelid fixed. This will make my eyes look more even instead of one eye being open more than the other.My surgeon will at that time get rid of the puffiness on the lids and under the eyes. So one eye will be 10 years younger than the other. then 2-3 months later she’ll do the other eye. Then She’ll correct the double vision. If I didn’t have the radiation, how long would I have had to wait until this could be done? How much worse would my eye be? How much scaring would have cause problems? I started to see double in march. By June it was getting worse by the day. July 1st I had the treatments. By July 17th(the last of 10 treatments)my right eye moved back 6 mil.The pressure is getting better each day. Please anyone who is new and just starting to have problems, or who does not have alot of scaring, you can contact my surgeon or radiologist for info or referrals.I also just got the names and nos. to the Jules Stein Eye Inst. of UCLA. Don’t let your Ophtho tell you, you have to “wait and see”. You can do something now.My E-mail is Hart2D@aol.com……Gwen

    Anonymous
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    Post count: 93172

    Gwen,

    Thanks for the information regaring the radiation.

    Hi ho, hi ho! It’s off to the Optho I go!!

    Keep your fingers crossed for me!
    Jenny.

    Anonymous
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    Post count: 93172

    It is important to know that radiation “may” work. I had radiation treatments twice and neither worked. It is just another tool available to try. I had decompression surgery while “hot” because I was literally going blind. Every case is different and radiation works for many people. The second treatments were because they just didn’t know what to do next.

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