TED -Surgery

I have Thyroid Eye Disease - my treatment to date is 12 weeks IV steroids and 10 sessions of radiotherapy. I have now been told by my consultant that I need to have decompression surgery on each eye, then eye muscle correction surgery and finally lid surgery. Has anyone gone through this who can tell me what to expect and has it improved your vision and appearance. I am really scared and will have to make a decision whether to have the surgery or just live with my sight problems and appearance.

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  • I have. It was brilliant. One eye at a time, the decompression took a while to settle and although my eyes were not as big as they were before the TED (they were unusually lovely) I look normal, see normally and would have it done again every time. My operation did not involve the bone of my orbits, but the removal of the fat laid down. I don't think i had anything done to the muscles. The lid surgery was fab - looked younger than before the TED!

    I looked a bit bashed until the bruising went down but it gave me back a life without feeling odd, embarrassed, self-conscious and ugly. The grittiness drastically reduced and all I need from time to time are eye drops - they get a bit dry sometimes. Nothing much. Don't be scared. Be bold and mighty forces will come to your aid.

  • I've just had my first eye done 5 weeks ago. I had a one wall or lateral. I cannot tell you how frightened I was and I would say it was my own fear that was by far the worst part. The operation took an hour and I was home first thing the next morning.

    People said about the pain and to ice after the operation and I had enormous expectations of how sore it would be but I can honestly say I felt no pain, eye irritation of the highest order for one day yes. I took a couple of co-codamol each night before bed and that was it. I did look like I had been five rounds in the boxing ring but that went after five days. I have some double vision which is settling and my eyes are dry. So I will need squint surgery and lit lowering but it has stopped me from progressive glaucoma which could lead to blindness. I had 16 round of IV steroids of 1000ml and I can honestly say that was worse. I refused the radiation because I wasn't brave enough, so you are braver than me. I am not looking forward to having the second eye done but I am so much less frightened now I know what it involves. There is a great facebook page for people with thyroid eye disease and although it can look a little scary as everyone posts their pictures, they are very supportive. It's a closed group, so no one can see except members. facebook.com/groups/3129984...

    It's very do'able and you get lots of sympathy from everyone from nurses, doctors to friends and family, even going out lots of people smile at you, not to mention it's a great dinner table story :-).

  • Hi I had strabismus surgery and a double decompression done 6 years ago, I had the strabismus done first as the double vision was so severe, and I had both eyes corrected at the same time (double decomp.) I had also had the IV steroid treatment and a drug to stop my immune system. My surgeon told me I would be driving myself to my follow up appointment 10 day post op, and sure enough I was. I made sure I did everything they told me, with the after care. I have never looked back the operation gave me back my sight and my life. I decided not to have the lid surgery, couldn't face another op but no one can tell and I just sleep with an eye mask. My eyes look perfectly normal, and I am eternally grateful. The muscles are weaker and I have my eyes tested every year and usually need a prescription change but that is nothing compared with how it was. Stick with it, I know at the moment it feels like the end of the world, and I can't tell you the op is easy but you will come through the other end and have a life again. X

  • Hi , I am a newbie and have no advise as such but am interested to know how the ted was diagnosed? Through GP /specialist or optician ?

    Thanks

    Lisa

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