[Kellimoe]

in reply to: Recently Diagnosed with TED #1180962

I too have been diagnosed with TED. During my.hot phase I was on high doses of Prednisone which at least stopped further damage to my eye. I also received radiation therapy. Actually bolted to the board and radiation aimed at my temples. Between both of these, I lost my hair, and developed Cushing’s disease.Neither of them are attractive on me so I wish my eye doctor would’ve had me wait it out! Good luck!

[Kellimoe]

in reply to: radiation treatment to eyes #1169380

I have been reading your posts and I’m hoping that doctor felt a little of your pain from the misdiagnosis. I realize that this TED is a rare disease but to not apologize is just rude. When you’re wrong you’re wrong. Doctor or no doctor. How are your eyes now? Are you feeling any different or is it comparable? They want to start radiation on me but I can’t seem to get past the fitting of the mask. I’m so claustrophobic it’s pure terror for me. I just don’t know if it is worth it or not. I’m hoping you are patch free and happy with your results! I look forward to hearing from you!

[Kellimoe]

in reply to: radiation to eyes-for Kelli #1169102

Thank you so much Shirley! Those are the main questions I have…..my eyes are bad today and the first message on my work phone was from the radiation team at Cancer Care today. They would like to alleviate any concerns I have so i will be calling them as soon as they open. I need help and I’m so scared of what is happening. I so appreciate your comments! Thanks again and I will keep you posted as to what they say! I’m very happy that you are doing so well!

[Kellimoe]

in reply to: SURGERY TOMORROW-palatal graft to lower eyelid #1169142

Shirley,

I am so glad that this surgery went well for you. I know what you mean about facing what the doctors are saying needs to be done. I’m new on here and your post gives me peace knowing that these things turn out OK. They want me to start radiation in both of my eyes and I’m freaking out about it. Do I or don’t I. I guess it’s never ending decisions for us with this very confusing disease. I’m so glad yours turned out so well and thanks for keeping us informed….especially with the typos! That’s how you know you have your eyesight!!! ” title=”Smile” />

[Kellimoe]

in reply to: New User? Start Here! #1061131

My name is Kelli and I was just diagnosed with Grave’s 2 weeks ago. I knew I had it but the eye disease part of the diagnosis is the tough part. My goiter is shrinking, the tremors have ceased and my double vision has ended. My eyelids have retracted and they want to start radiation on them. I needed more time to research this topic because I don’t really know about the benefits of doing such a thing and I don’t want to do something that I will regret. Has anyone had this done? I have a definite lid-lag with retracting eyelids but the swelling around my eyes has gone down significantly with the use of steroids. I’m scared of radiation and they already tried to fit me for the radiation mask, which didn’t work due to my claustrophobia. I’m having nightmares about this and I could truly use suggestions from my fellow diagnosed friends. I’m okay with the hyperthyroidism because the meds are working for me but the eye disease will continue even if they took the thyroid out, so dealing with this has been difficult. Please…any thoughts on the radiation therapy will be much appreciated.

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