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#1 March 5, 2018 10:17:16

Pittsburgh409
Registered: 2018-03-05
Posts: 1
Profile  

Radiation treatment (NOT RAI) for Graves Ophthalmology

Want to hear from those that have had radiation treatments for their eyes. I had my consult and it's 5 days on, the weekend off, 5 days on…says it's my best chance to “go back to normal” looking and alleviate symptoms. It seems like I hear more about surgery experiences but not actual radiation treatment.

Anyone??

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#2 March 5, 2018 14:20:00

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4052
Profile  

Radiation treatment (NOT RAI) for Graves Ophthalmology

Hello and welcome - hopefully, you will get some responses here, although you are correct that more people have had surgery for thyroid eye disease than radiotherapy. Here's some info from the International Thyroid Eye Disease Society:

http://thyroideyedisease.org/radiotherapy/


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 March 6, 2018 03:03:30

Liz1967
Registered: 2014-02-25
Posts: 243
Profile  

Radiation treatment (NOT RAI) for Graves Ophthalmology

I had orbital radiation, I think I had 2 extra days in addition to the 2 5-days courses. I had severe ophthalmopathy and had completed IV steroids. The treatment itself is no problem and I was on oral prednisone during and for a couple of months after treatment. It stopped the progression of the diplopia and helped a lot with irritation. In my case, it did not return eyes to normal and I had orbital decompression and strabismus surgery the following year. I had optic neuropathy, which is why I had IV steroids and the radiation. It does need to be done like within 6 months of beginning of eye symptoms and I was at 8 months so the sooner the better. The fitting of the mask is a bit scary but being tied down via the mask to the table turned out to be not so bad. I had it done at Emory.

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#4 March 13, 2018 21:14:57

debill1979
Registered: 2018-03-13
Posts: 2
Profile  

Radiation treatment (NOT RAI) for Graves Ophthalmology

I had orbital radiation. My eye disease was described as red hot. I has symptoms for about 18 months and on steroids for six months before the radiation. The treatments are easy. 15 minutes. My clinic was very punctual. Ask about the side affects of thr treatment. By the final dose my eyes were really irritated and burning. Hypersensitive to light. I didn’t drive or hardly go outside for 3 weeks. Not everyone experiences this. Keep your eyes lubricated with preservative free drops. The healing is slow. Don’t expect immediate results. Good luck

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