Unable to see after orbital decompression

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I suffer with Thyroid Eye Disease (TED). I had an orbital decompression carried out on my left eye 9 days ago. Since the morning after the operation I have been unable to see.

I have had an MRI & a CT scan which both came back saying my optical nerve was healthy & there's no sign of a hematoma which would cause oxygen loss meaning loss of vision.

The doctors suspected I may have had an eye stroke as this was the last thing to rule out. They arranged for me to have Fluorescein Angiogram carried out yesterday to look at my vessels to try & diagnose if I had indeed suffered an eye stroke. The test came back that my eye was clear of any problems. I was told if the photos taken from the back of my eye were shown to a specialist who didn't know my case he would say my eye is perfectly healthy - yet I'm still unable to see anything out of my eye.

The doctors are completely baffled by my situation, they have never seen anything like it before & my file is being sent to the mentor of my surgeon who is based at Morefields is London. I have no timescale as to when I will get a reply & I'm obviously worried that I won't see out of my eye again.

Has anyone come across anything like this before? 

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6 Replies

  • Posted

    Oh god how awful for you. What is an optical decompression?

    I'm guessing they've checked your retina is attached by completing a dilated eye exam?

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    • Posted

      Yes, everything is attached & looks healthy. One idea they have is that I had an eye stroke which then cleared itself but this doesn't add up when you look at my vessels as they don't show any trauma. The retina has oxygen going to it & it doesn't show anything to be wrong. I was in hospital for 3 days on a steroid IV to try & bring the swelling down, as that was another suggestion. I currently have no movement in my eye either, which adds to the mystery. 

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    • Posted

      Orbital decompression is where they remove some of the bone at the side of the eye socket so my eye would sit back as it was pushing forward due to my TED. 
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    • Posted

      How strange?

      If there's been a stroke of the eye have they given you any advice on when it gets better. Will keep my fingers crossed for you.

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    • Posted

      From what I understand there is a 90-120 minute window to treat an eye stroke before permanent damage is caused. Although I seem to have the symptoms of an eye stroke there is nothing there medically to say that I have. 
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