[hollygsmith]

#1060046

It’s been over a year since my orbital decompression surgery and 6 months since my retraction repair. But guess what, my TED is not quite done wreaking havoc on my life yet. The pain and swelling are back. I am so scared that everything that was fixed with surgery is going to be undone. I am back on steroids-Booo! and the doctor mentioned orbital radiation as a possibility. I can’t believe this is happening.

[Raspberry]

#1179920

I’m sorry this is happening for you and I hope it’s just a temporary flare. Do the steroids typically work to slow things down? I know there’s a few other more experimental drugs they can try too – don’t think I’m allowed to mention here though.

[hollygsmith]

#1179921

Thanks Raspberry. The steroids can slow things down by suppressing the immune system and calming the inflammatory response. I have even heard stories of steroids bringing flare ups to a halt. The problem for me is that I was on steroids for a very long time for TED and every time I would try to wean off of them my eyes would get worse. I also experienced terrible side effects. So I am definitely only willing to take a short course of steroids this time. I see my doctor again next week and will definitely ask about other options including experimental drugs. Good idea!

[Boomer]

#1179922

Hey thee Holly!

I hope this is a simple and temporary setback for you and that you feel better right away.

Stay patient and hopeful!

Boomer

[Kimberly]

#1179923

Hello – It’s rare, but TED can occasionally recur. One doc at our San Diego conference mentioned that this can occur in conjunction with major stress.

As others have said, hopefully, this is just a temporary blip for you. Please keep us posted!

[hollygsmith]

#1179924

Ok, so good news! I saw my regular oculoplast today (last week I saw his associate because he was on vacation) and he thinks it’s very unlikely that my eye disease has reactivated. He thinks I have a sinus infection that has affected my orbits. I get to start tapering off the prednisone immediately:) If it gets worse I will do a round of antibiotics and if needed will do a scan to see exactly what is going on with my sinuses. This is such a relief! Thanks for all of the support and kind words:)

[gatorgirly]

#1179925

I was scared that my TED was flaring up earlier this month (I’ve been in the cold phase since August 2011). My eyelids were swollen and red, and I felt pressure and minor pain. Eventually the headaches started. Turns out, it wasn’t TED at all but A. major stress (I was in the process of interviewing for and negotiating my salary for a new job in another city) and B. the beginning of a sinus infection, which is now pretty severe but I’ve been getting them ever since my OD was done endonasally last fall. This is something I’ll need to address in the near future but for right now, I’m prepping for my eyelid surgeries next week. I’m just relieved to know I’m not the only one who assumes any eye pain or swelling is TED-related. Antibiotics make a world of a difference when I get these sinus infections, as does plenty of rest and fluids.

Hope this is the last TED scare you have. We’ve been through enough!

[Author]

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