Advice of reconstructive surgery after Thyroid Eye Disease

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Hi,

I am currently facing a complete nightmare concerning the surgery I need to have to correct my ugly, hideously disfigured eyes. I am so depressed, I don't know what to do. Basically my disfigurement impacts quite heavily on my life; I have practically become a hermit, I don't like going out, I don't see my friends any more and when I do have to go out, like for example to buy food, I wear dark glasses to hide my ugliness. I quit my job because I could not face people any more and now work from home where I never have to meet people face to face. It has completely knocked all my confidence so I am desperate to have the surgery to correct my eyes.

I had orbital decompression done on both sides and this was successful. Now I need the plastic surgery bit. To start off, I need to have one of my eyelids lowered as my eyes open really unevenly. Unfortunately, this apparently has to be done under local anaesthetic. Big problem is that I have a medical phobia.

I'll cut a long and very distressing story short. I went in for the procedure, it was a totally horrible experience, far worse than I could have imagined. It was incredibly painful, I had a panic attack, I threw up, my consultant didn't have time to do it in the end so I went through it all for nothing at all. I am still disfigured. I do not trust my consultant any more. I am so traumatised by it I have been experiencing nightmares and night terrors as well as deep depression. I am too terrified to go back again - what's the point, now that I know what to expect actually makes is a million times worse and I'll be in such a state that I'll throw up again. Apparently I can't have it done under general anaesthetic (I'm fine under general, don't know what's going on under general. You go to sleep before it starts and wake up when it's over - perfect!) because they need me awake during the procedure.

I've asked for an appointment to see my consultant but that was 4 months ago and I still haven't heard anything - got a feeling she doesn't want to see me.

So I guess my question is what are my options now? Is it possible to have eyelid lowering surgery under general? Are there other procedures that can be done to correct my disfigurement? I'm not interested in anything that can only be done under local - simply not going to happen, not ever. I am so desperate not to look like this any more, any advice would be greatly appreciated.

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7 Replies

  • Posted

    i am in a similar situation. I was diagnosed with TED 12 months ago and have undergone Steroid Infusion therapy twice, radition therapy twice and have been told to have orbital decompression asap. My eyes do not bulge so much but my eyelids are very swollen. I most probably would have to undergo lid surgery too after the active Phase. How was the procedure done for the orbital decrompression and how long did you stay in Hospital?.
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  • Posted

    Totally understand where thread starter is coming from, I was never offered anything for my eyes! I was basically dumped after thyroidectomy in 2007, I've Hud myself away all thus time thinking this was it!!! X
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  • Posted

    oh my word, i really feel for you. I am appalled that you have been left lke this, it should never be.

    I've got TED and had it for over 5 years now, it really is hideous. Luckily i only have it in my left eye and didn't have to have decompression surgery, but have had eye muscles re-aligned 18 months ago and then upper eyelid surgery on both eyes in July 2013, which i'm still recovering from. i still get nerve pain and the stitch line is very painful and am back to see the consultant on Fri. My gp thinks as i have fibromyalgia i'm taking longer to recover and she know people with fibro who can take up to a year to recover, that explains why i was still seeing a consultant 9 months after the first surgery maybe.

    As to your recent surgery i know exactly what you mean ... oh the pain, i thought i was going to pass out as he kept injecting anaesthetic into my eyelids and brow. i thought he was quite rough actually but i suppose there is no easy or painfree way to do it. i went into shock afterwards, just kept shaking and couldn't stop and couldn't breathe. Out came the old paper bag as they whisked me off into a side room, not nice and i said to the nurse as they finished surgery i feel shaky yet still they took me into the waiting room with everyone else, it was only a ladt that callled a nurse some 15 mins later that they bothered !! not best pleased i can tell you as the painkillers and anaesthetic were wearing off and i felt dreadful.

    I'd certainly go back to your GP and explain the situation just as you have here and ask for some help and phone the hospital again and ask why you've not heard from them and stick with it till you get an answer. Ince you see the consultant you can tell them all the issues you have,. i find i have to keep chasing the hospital up for appts, seems the keep "forgetting" to send me the next one !!

    Good luck and i really hope you get some answers, keep us posted love, those of us that have this vile TEd are with you xx

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  • Posted

    Do you know a lot of fibro is inadequate thyroid replacement?
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  • Posted

    it seems as per bloods ast week my thyroid is in the normal parameters, buy i'm amazed by the amount of people that have or have had thyroid problems and now have fibro. it also can effect the eyes so a double whammy for me !!!

    i often wonder if any research has been done into thyroid and fibro

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  • Posted

    It's the myth of one little pill solves/cures all! Crap!
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  • Posted

    I have recently loss sight in left eye due to bulging eyes from Thyroid.They had to do emergency surgery on eye and had success with some sight but then developed a Grey film on eye.It has been 7 weeks since surgery and cannot feel the left side of face.My doctors want to do my right eye now but I have refused until I get feeling back in left side of face.Also they say I may need radiation on my left eye due to the haze over left eye.I really need some advice on this.
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