[blakekr]

#1017851

Hi all, question for you. I just saw a TED specialist today and he recommended the works, OD, strabismus and lid surgery. I can’t disagree that I need it, my only concern is whether I’m really in the burnout phase yet. I still have a lot of swelling around my upper eyelids, especially on one eye. It was worse before, but there’s still a noticeable amount. I kind of expected that this would disappear during burnout and just leave sagging skin in its wake. (I’ve had TED for two years … so kind of on the edge in terms of its expected life span).

Fellow TED sufferers, did you make it to a clear burnout phase before you had surgery? Did your upper-eyelid swelling go away during this phase? (Mine makes me look like a frog when I turn my head to the side). Appreciate your feedback.

[Bobbi]

#1061304

It is difficult to tell the difference some times, between soft tissue "swelling" and the effect that protruding eyes have on the layers of fat under the eye lids that help to protect the eyes from the front. I experienced swollen eyes at one point in my treatment process for the hyperthyroidism, and it was different from the pushed out fat pads that occurred as a result of the expansion of the eye muscles (which then push the eyes forward in the head). For one thing, the swelling extended down onto my cheek, whereas the fat pad issue stayed pretty close to my eyes. I don’t know if that helps. Anyway, protruding eyes will push out the fatty tissue around the eyes, and appears like swelling, and while that may subside some when the hot phase is over, it may never go away if there is fairly significant protrusion.

[Stephanie]

#1061305

I have had TED for 2 years now. I have a lot of swelling on my upper and lower lids, my right eye is more protruded than the left, and I notice my cheeks look more puffy as well. My opthamologist says the cheek swelling is actually fat pad formation, similar to under my eyes. I constantly look like I have bags under my eyes.

My opthamologist had me wait a year and a half before I had lower lid blepharoplasty, this past April. I thought the hot phase was over, as the swelling had stayed the same since last Sept. However, I guess it wasn’t over, or maybe the surgery actually restarted the hot phase. My under eyes are still puffy and very noticeable to me. Just a small difference than from before the surgery. Maybe its due to my seasonal allergies?? (i hope). I have another appointment in Aug to see my opthamologist again.

I have heard of cases where TED gets better on its own, where as others go on for ever. TED has been the most difficult part to Graves Disease. I wish all the best to you.

[blakekr]

#1061306

Thanks to both of you for your responses. Oh, how I wish I could peer ahead and see if this madness would ever resolve before resorting to all that surgery. Would it heal in three more years? Five? Never? On the other hand, after two years I am really tired of frantically avoiding photos and mirrors, and looking like this.

[Bobbi]

#1061307

TED does indeed get better on its own. But that does not mean that the effects of the changes to the eye muscles will revert to pre-disease normal. It will ease off the worst of things, but by how much it is very difficult to predict. If enough changes occur to the eye muscles during the course of the disease, we can be left with permanent changes to our appearance and our vision, even though things may have "improved" somewhat.

Obviously, this makes it very difficult to determine when OD and other surgeries should be performed, if they are being considered. In my case, they were never even considered, and that was despite the fact that my eyes protruded a bit, and I had intermittent (but frequent) double vision. I don’t look pre-disease normal, but the double vision went away (unless I am very tired), and there aren’t enough "cosmetic" changes to warrant having something as severe as OD. Every case is different.

I think the best thing to do is to listen to your own doctor. If you have doubts about it, get an appointment with another, equally well-qualified doctor to get a second opinion. It’s not perhaps perfect — it would be nice to be able to be absolutely sure the minute surgery might be warranted — but it’s the best system we’ve got.

[Stephanie]

#1061308

Bobbi, thank you for your response. That gives me hope. Blakekr, I absolutely understand how you feel. This nightmare started when I was 26. I just want it to go away! And yes, getting enough sleep/rest is a big thing.

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