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Tracy,
I am very new to this too and wanted to know have you already had the surgery? How long have you been treated and how have you been treated? I myself went through 2 Rai treatments after years of the anti thyroid drugs (on and off). The eye docs. want to keep waiting to see if they do even out and they sort of have gotten better! The drs. don’t want to do surgery too soon in case you do get better. It is a very frustrating and humiliating process to wait but in my case, this might have been the right thing to do. I think my "bad eye" is going down almost enough to match the other. Talking w/Dianne and Peter and reading other peoples struggles here has completely changed my mood in the last few days.
Keep searching …..knowledge is power. Robin.Hello and welcome!!!
I am sorry that you are going to have to undertake the surgery for any reason.I am unable to respond to your question but I know the people who will respond will ask you this;
What type of surgery?
What is the reason for the surgery?
Do you have Graves’ Disease?
Do you have Thyroid Eye Disease?(Graves’ disease and Thyroid Eye are two separate issues although your eyes can protrude with Graves’, Thyroid Eye is a separate Disease although you can get both of them).
I am not sure about posting pictures as I am not a facilitator or moderator so I can’t answer yes or no to that one.
Do you currently have Graves’ and are being treated for it?What ever your answers are either way, I’d like to say…
Has the dr. made sure you were ready for surgery (pre surgical testing)?
Are you aware of exactly what you are about to do and prepared for it? <—-not asking the question for you to answer me just saying that this is something your dr. should have made you comfortable with by now.Prayers for a good out come and again welcome here!
I think Dianne would be the person to talk to. She has a website with pictures of other people that had the eye surgery. Because of her I made a DVD of my facial changes with Graves’ and TED and how I looked the day’s after my five eye surgeries till now. My eye’s are now about normal. If for no other reason it helped me see what my family was seeing all these years. I think it is a good idea to keep some sort of record.
Hi,
I am fairly new here, and have decided to undergo the surgery for my eyes.
My question is does anyone know of any websites I can post pictures and other info about my experience to?
I know how difficult the search for info is, and how helpful other experiences can be. I hope with mine coming up, I can help someone else.
Thanks,
TracyJust so you know, it’s easy to post your own site in order to share pictures and experiences (MySpace or FaceBook are two easy routes to take) ~ or you can post video on YouTube (you can post a new one each time, and they are connected through your user name). You can reference the link or username in your profile here, or even include the URL in your signature, if you’d like people to be able to find it easily.
I don’t know of any one clearinghouse for TED pictures & info.
In RE: mamabear’s post of the following
"Do you have Graves’ Disease?
Do you have Thyroid Eye Disease?(Graves’ disease and Thyroid Eye are two separate issues although your eyes can protrude with Graves’, Thyroid Eye is a separate Disease although you can get both of them)."I was diagnosed in October ’05 and in all my own research I guess I never caught that GD and TED were not one in the same. I guess that I just lumped them together because I was not diagnosed until my eyes were so bad that I had double vision. So, I’m asking what the distinction is between the two so that I’m not informing others incorrectly who ask me what happened to my eyes. I’ve always said it was from an over active thyroid which was GD but that a small percentage also has the TED.
Thanks,
CyndyActually, Thyroid Eye Disease is a separate autoimmune disease, with its own antibodies. The antibodies in TED attack the tissue behind the eyes, causing it to swell. Well, depending on your age, the antibodies either attack the fatty tissue behind the eyes or the muscles behind the eyes. Younger patients have more involvement in the fatty tissue, older patients have more involvement in the muscle tissue, and people in between get a little of both. (I’m not sure where we draw the line between "younger" and "older" exactly, but you can probably guess a ballpark). Since the eyes are enclosed in a cone-shaped bone cavity, once there is swelling behind the eyes, usually the only thing for the eyes to do is to bulge out. In rare cases, the tissues around the eyes swell instead.
Upon autopsy, ALL Graves’ patients prove to have some level of TED involvement, though you can’t always see it. Only a very small percentage get the very worst effects of the eye disease.
From beginning of symptoms until confirmed "cold phase," most are looking at a disease curve that lasts between 1 and 3 years.
Does that help?
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