[jeff92]

#1060720

Does anyone know what to expect with the radiation therapy of the orbits of the eyes? Am curious to know your experiences, successes, questions to ask the Dr and radiation therapist, number of treatments, etc.
Thank you.

[Liz1967]

#1184322

Jeff, I had orbital radiation done at Emory in Atlanta. I had daily treatments for 11 or 12 days, can’t remember which, but slightly longer than the normal course of ten days. The treatment time is very short, like a minute total or less. They make a mask of your face, put it over your face each time, and affix it to the table. I know, sounds like torture but it looks like a hockey mask only made of plastic webbing. Anyway, you stay still, you see a blue light go across on each side and you are done. I had optic neuropathy soon after onset of TED, which necessitated weekly intravenous steroids for three months. I had the radiation after that to stop the progression of the double vision as well as any optic neuropathy exacerbation in the future. I had really bad lid retraction on one side. After the third treatment, the lid came down a lot. It helped with the redness and irritation somewhat. The double vision slowed a bit but I also had a thyroidectomy in the middle of the steroids so that brought it all to a halt in about six months. You do take oral steroids in a tapering dose starting a couple of weeks before treatment and stopping a couple months after. The radiation doc told me that he had patients sent to him after orbital decompression failed to cure optic neuropathy. I personally know one person who continued to lose vision after emergency orbital decompression for optic neuritis and had to have orbital radiation. Losing vision is the worst result of this disease and I really wanted to take no chances. There are people who have better results than mine in reversing double vision. It is best done in the first six months of TED and I was already at 8 months. The risks are mainly cataract formation, which did happen to me from the radiation and the steroids. There are minor risks of retinal issues but a good radiologist can keep any risks to a minimum. If I had it to do over, I would probably skip the steroid infusions and do the radiation early. Thyroidectomy halts the disease progress within 6-12 months but I think maybe radiation would have stopped the muscle fibrosis sooner. At any rate, I was more comfortable and I only progressed a few more diopters of double vision. Hope this helps.

[Kimberly]

#1184323

Hello – I have not had this done, but here are a couple of good resources that will hopefully be helpful:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

Presentation from GDATF 2011 Conference:
https://www.youtube.com/watch?v=jy5y6gb2AHk

Info from the International Thyroid Eye Disease Society:

Radiotherapy

[jeff92]

#1184324

Liz…thank you for your detailed response. It is so helpful to know more about this…

[jeff92]

#1184325

Thank you Kimberly..you are so helpful.

[Lisa18]

#1184326

Hi – I’m new to this forum and have the same question as Jeff as to what to expect with radiation thereapy. I’m had TED since October of last year. I’m currently on prednisone (60 mg per day) and am meeting with a radiologist in NYC on Thursday to discuss radiation therapy. My TED doctor in February told me to taper off the prednisone and then “ride it out” until August or September, when he felt the active phase would end. Who is he kidding? Just tapering off the prednisone for a couple of weeks was terrible – severe redness/watery eyes, stiffness/swelling and double vision (especially at night when tired). Told him that wasn’t an option so we are now moving towards the radiation therapy. I just hope it works and will get me back to “normal”. I know there will be several weeks of increased swelling after the radiation but after that, will things go back to normal? I want my baby blues back!

I’ll check out the links that Kimberly mentioned as well but I have a feeling I’ve seen them already – there doesn’t seem to be anything newer (thinking there might be some newer advances)

Thanks!

[Kimberly]

#1184327

Hello – I’m not aware of anything new that has become part of the standard of care, although there are a number of clinical trials going on. If you visit clinicaltrials.gov and search for “thyroid eye disease”, you can find a number of studies that are in process or recruiting.

[Liz1967]

#1184328

Lisa, here is a link:

http://www.ncbi.nlm.nih.gov/pubmed/25012831

In case there is a problem accessing this link from a journal from 2015, here is the conclusion:

“Orbital RT is a generally well-tolerated treatment that helps minimize the dose and duration of corticosteroid therapy for patients with GO while improving ocular symptoms, including proptosis and diplopia. Prospective research should consider using corticosteroid requirement as a measure of response to orbital RT for GO.”

This study is from a respected journal. If you do a Pubmed search, you will find other recent studies. There seems to be a renewed interest in orbital radiation for Graves.

Hope this helps.

[Lisa18]

#1184329

Thanks, Liz. I was able to access it – positive findings is what I want to see! Actually meeting with radiologist today and hoping to start RT soon.

[Lisa18]

#1184330

Starting radiation therapy 4/4 for 10 days – had mask made – that’s something! Hopefully everything will go well. Doctors said I shouldn’t have any side effects. Just can’t wait to get rid of all this!

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