Need info for orbital radiation for Graves Ophthalmopathy

[Manda29]

My Ophthalmologist just sent in a referral for orbital radiation. I have not been able to find any information about it and am very nervous about having it done. I am willing to try it as long as the benefits out weigh the risks. Has anyone had this done or have information about it?

My eyes are so sore and bulging... :( and I really really don't want to go back on prednisone! has anyone tried natural therapies and had success?

Thanks for any help!

[Manda29]

Hello!
I haven't been on here for awhile...
Anyways just wanted to share my update!
I had the orbital radiation and just finished it on July 31/09 (which was the day I was diagnosed a year ago with Graves!)
So far it has helped! My eyes don't seem to be bulging as much. But the bags under my eyes are a bit bigger. The Dr's say it can take up to three months for the full effects of the radiation to show. I see my ophthalmologist in the beginning of October so we'll see how the measurements are.
Even though it's not a 'recommended' treatment for Graves anymore... i am so far pleased with the results!
I see a surgeon next week for my TT, hope that I can have the surgery asap! Just want to get things going and then done with! I have heard a few people say that their eye symptoms have improved after their TT... so hoping that will be the case for me!

[tm514]

Funny how doctors have different opinions on stuff - my eye doc wouldn't do the surgeries until my thyroid levels were stable - to get there I had TT a little less than a year before the first eye surgery.  Of  course, my eyes needed to be stable as well - he followed me for a year before he would schedule the first surgery.

I'm not sure if you have read this, but if you are offered RAI as part of your thyroid treatment, be very careful, as there is some evidence that it makes eye problems worse with Graves.  As my endo said, it might not make it worse, but if it does, there is no taking it back.

Ah, the night ointments....I had totally forgotten about that, must have been repressing that memory because I hated that stuff, couldn't see very well after I put it in.  I, too, had the comments from little kids, and I always just looked "freaked out" because of the eyelid retraction.  

I hope you make the decision that is right for you.  I wish you the best.  

[Manda29]

Thank you for your responses. Yeah it is so frustrating! I was diagnosed July 31/08, so it has already been a long road... I was on Prednisone from November up to 5 weeks ago. I WILL NOT go back on that. Not only did I have bulging eyes, but had VERY puffy cheeks. No one recognized me, so I didn't leave the house. Now that my cheeks have come down I am looking alot better and HAVE left the house! Yah! I've been on Methotrexate since January and not sure if it is working or not, but I'd like to think that it is. I'm managing and all I really have to do is wear sunglasses during the day and apply LOTS of ointment at night. Ophthalmologist says that once they stabilize I will then have the 3 surgeries incl orbital decompression. The endo says the surgeon won't remove my thyroid until my eyes are stable as well. It can't come soon enough! One of the hardest days I've had is when my friends 4 yr old daughter said that my eyes were scary... their so honest... Lots of positive thinking! I'll update once I've had the radiation - if thats the route I choose...

[cbread]

Just chiming in on the TED thing. I am planning eye surgery in 2010 but still need to regulate a bit before they will do it. It's so awful, I agree on the worst enemy thing. It's sad to think with all the medical advances they can't get rid of stupid eyeball swelling.  

[tm514]

I have read about radiation therapy for Graves eye disease, but did not have it.  I asked my eye doctor about it and he didn't think it had much effect, but then, he's a surgeon and inclined to cut.  The radiation is supposed to shrink the swollen tissue behind the eyes that causes the bulging.

I had orbital decompression on both eyes a little over two years ago.  Best thing I ever did for myself.  Graves eye disease is a long road, and there are no quick fixes.  However, the surgery has made a world of difference for me.  I know that isn't an option for you right now.

I wouldn't wish GED on my worst enemy, so I fee for you.  It takes a lot of patience to endure this disease.  Some days, it is overwhelming and you just want it to go away.  I wish you the best.