[josimadera]

in reply to: Strabismus surgery experiences #1180490

Diplopia *is* awful. I’ve had it since my first decompression in Jan 2012. I’ve had 3 decompressions and now there is no more bone to remove. I had another flare in Jan of this year and needed radiation.

The prisms don’t work for me, either. My deviation is too strong for the prism to be ground into my lenses so I had one that stuck on the lens (I forget what it is called). But I patch one eye instead of using the prism – it doesn’t really help me, and patching seems safer.

Finally, my eyes have been stable long enough for strabismus surgery, and I will need 2 of them. One to correct right-left/up-down, and a second to deal with the torque (rotation). Then, finally, the eyelids.

I am super excited about being able to see again, but I have major anxiety over the adjustable sutures and the procedure to adjust. I will be talking with the surgeon again, about a week before surgery, so I will be able to get my answers… in the meantime I’m obsessing a bit. I’m a… bad patient. I get panic attacks, and I’m terrified that I will shake/jump/flinch during the adjustment. I was told one will happen directly after surgery when I regain consciousness, and then again at my post-surgical follow-up. And even if I don’t need a second adjustment, the surgeon still needs to trim down the sutures. Being sick AND crazy sucks.

[josimadera]

in reply to: What do Graves’ AB affect? #1177188

Thank you for the information – I will be checking out the links. I’ve already had 3 orbital decompressions (2 endoscopic, and one 3-wall bilateral) and there is no more bone to remove. Currently I am taking prednisone at a high dose (80mg/day) as a rescue measure, but I am having every side effect (diabetes even though I’m 110lbs, bone thinning, gastric distress, insomnia, etc).

My eye docs are at their wits end. They thought everything was improving, but the last CT and field test showed another flare-up. I am concerned about losing my vision – not just in the short term, but over the course of the rest of my life (I’m 42).

[josimadera]

in reply to: Super-severe TED… anyone else? #1174708

I saw my eye doc today and it appears that my Graves related issues are continuing to improve post-surgery, so the doctor is thinking the dark-outs are lupus related. I’m seeing a neurologist this week, to rule out potential brain swelling (because I’ve been having ringing in my ears which, when combined with the eye dark outs, could mean brain pressure).

In that case, too, the treatment would be prednisone. I do not tolerate it well, and have permanent damage from prior high dose usage.

The good thing about it probably being lupus is that for me, those flares last days to at most a couple of weeks, whereas the Graves flares last for months. I’m hoping I am in Graves remission.

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