Thyroid eye disease

[she33]

I am having decompression surgery on tuesday and was wondering if anyone that has had this can give me some answers ie was it worth it, how long did it take you to recover, and anything else that might help thanks very much

[shambles]

she33, I have TED and my eyes have remained in the active period for 8 years :/, I am now going into burn out phase and hoping for OD this summer. I have joined a facebook page with about 800 members worldwide and it has been a blessing. It's a private page and really positive posts from lots of people having OD.

I'm not sure what you are having done 3,2 or lateral walls? Most people seem to have one eye done and then the second eye a week later but there are some that have both eyes done at the same time, I think it depends on how much work is being done. Anyhows, its seems a lot of people are in hospital over night or less and up and about the next day. Most people report the surgery takes around one hour. Here's the facebook link. facebook.com/groups/3129984...

I wish you well with your operation

[she33 in reply to shambles]

Thanks very much for your reply i will take a look at the page sounds very interesting , i am having both eyes done and i think im getting bone removed from the bottom and sides of my eyes, fingers crossed it helps as i am loosing my sight lost some colour vision already and in a lot of pain oh and the dreaded double vision too thanks once again

[shambles in reply to she33]

I feel for you. It's really awful the eye disease and there is no getting away from it. It hurts, it cause all sorts of vision problems and in my case is the dominant feature of my looks which I find hard to accept.

On the plus side I have that there is a great deal of support and sympathy from doctors and specialists and they will go to the ends to make sure that they help in any way with eyes.

Like I said I have diagnosed for 8 years but had it longer. I was diagnosed withe Graves' by my eyes, no blood test required :/. In the eight years I have avidly read and researched and the speed at which they are learning and developing surgery for the eyes is amazing. I hope you do look at the facebook page as it is very factual but amazing positive showing people daily having OD and the great turnaround in their lives.

Good luck with your surgery and please keep me posted on how it went and how you are doing. Better things to come