[Marlan]

#1060299

Hi, I haven’t been to this site for a long time. I have never had any abnormalities with my thyroid levels. My thyroid antibody levels were very high at the time of diagnosis I only have a left swollen bulging eye. This has been going on for about two and a half years. I have had 2 eyelid surgeries because of retraction, but my eye still bulges. I have been contemplating having surgery to fix this, but truthfully it freaks me out. There has been some improvement in the swelling and bulging. I keep hoping that things will continue and I can do without this surgery. I have been stable and in the “cool” stage for about 9 months. I still have an occasional rough times with the way my eye feels. My regular eye Doc. thinks I should have this surgery as it will help my comfort level, but the surgeon the last time I saw him had more of a wait and see attitude. I wondered if any of you have an experience or thoughts about this. Lastly I have found that wheat and corn products can really trigger bad days and increased swelling.

[snelsen]

#1181830

I am assuming when you say “at the time of your diagnosis,” you mean for TED (thyroid eye disease?) Not Graves’. They really are two different subjects. Pretty sure you know that.

If you had a diagnosis of TED, you probably have learned from this site, and hopefully, some doc, that TED has a time line all of its’ own, the “hot,” or active phase, when it is NOT the time to do any corrective surgery, and the
“cold,” or inactive period.

Generally and specifically, there is a sequence for any surgical procedures, and there is logic to the sequence. If an eye is bulging, the other words for that are exopthalmus, and prophetic, (which means, basically, bulging out out the eye socket. So, sorry to say, that eyelid surgery, as you have had a couple of times, does not work very well, cause the eye is still bulging out. BUt, from what you have written, I am thinking that you chose those options, rather than having an orbital decompression, to make room for the eye to go back to a normal position??

Since you have been in the cold stage quite a while, I think it would be very helpful for the surgeon to order an orbital CT of that eye, then you have a really good picture of what is pushing the eye out. Usually it is larger eye(swollen, or fibrosed from the active phase of TED) muscles, and increased orbital fat. You can ask, and you already have two opinions, but I think the orbital CT would give a lot more information. You don’t need an MRI. I would not expect any improvement in swelling and bulging at this time, but if you see the improvement, and don’t want the surgery, I guess you are deciding to go with the wait and see..surgeon?

I dont’ have much to say about wheat and corn related to your eyes. If you see the relationship, then, of course, avoid them as you are probably doing.
But the physiology of fibroses muscles and orbital fat won’t change cause of diet, I don’t believe, so this is another question for your doc!
Best wishes….Shirley

[shakira7]

#1181831

Hi Marlan,
I’m so sorry you are going through this. I agree with Shirley, that perhaps the first stage of operation is the orbital decompression, which is what you should be able to get by a good surgeon.
I, myself, have been experiencing swelling on the upper eyelid and undereye bag since september this year.
Do you mind if I ask you, when did your left eye start to bulge? In another word, within how many months or years have you started noticing that your left eye started bulging?
In my case, I noticed my swollen eyelids on one afternoon in september, walking home and looking at my profile reflection from store windows on the street. I thought something was different, and then I came home & compared my pictures of previous years.

Take good care of yourself, and hope you’ll be able to get the orbital decompression done as your next step.

Shakira

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