[Ski]

#1066246

It sounds like your surgery may have stimulated the antibodies at the root of TED ~ if you weren’t in the established "cold phase," then there is a risk of surgery prompting a new level of activity from the antibodies, but there are also rare cases where patients suffer more than one "hot phase" during their experience with TED, so that’s possible too. Bottom line, if someone can fix it, be grateful they can. It’s true, the usual course of surgical procedures is supposed to be decompression first, strabismus (muscle) second, lids last, but apparently no one knew you would need decompression, so here you are. This is exactly why they recommend that the surgeries are done in that particular order, because once you’ve changed something surgically, you’ll have restrictions if other things happen and you need to change it. Still, as I said, if someone can fix it, be grateful they can do it, and good luck with it!

[kylesmom1007]

#1018653

Hello all. I found this site incredibly helpful when I was first diagnosed with Graves and TED a little over a year ago so I’m back for more! I had double vision caused by my left eye which worsened quickly and stabilized enough by October to schedule surgery for December. I never had bulging, but had the double vision out of the gate along with watering, sun sensitivity, deer in the headlights stare, etc. I had the surgery to correct the double vision on 12/21/09 and 2 weeks later my eye was bulging and my lower lid fell about 1/2 inch, but my sight was great – it has since degraded a bit and by mid afternoon I have slight doubling again for which I have an appointment next week – probably prisms will help again.

The real point – The Optho who did the surgery for double vision said that because he cut the muscle, when it relaxes, he couldn’t control how much it might fall forward which is what he claims caused the bulging. I look utterly absurd and my eye is constantly red and irritated despite tears and gels. Now a new Optho says she wants to do decompression surgery to fix the bulging and then reconstructive surgery to fix my bottom eye lid and bring it up. Has anyone ever heard of decompression AFTER diplopia surgery?? I have always heard that decompression comes first – but my bulging didn’t happen until after diplopia surgery. I cannot find any information on this anywhere and I feel totally in the dark. I am with Kaiser and my choices for doctors and specialists are very limited – I’m feeling like the first doctor made a mistake and now the other doctor is trying to fix what he messed up. Thoughts?

[Jake_George]

#1066247

Yes actually I had five strabismus surgeries to correct double vision before the orbital decompression. And yes depending on what muscle they cut it can make the eye sag(for lack of a better word) and need to be propped up later.

I had a hard pallet graft prior to my decompressions. That involved taking part of the hard pallet from the roof of my mouth and grafting it into the lower eye lid. This worked to prop up the lower lid and protect the eye. Once I had the decompression I needed upper lid surgery to reposition the upper lid.

All in all the end result was great. My eyes look normal and I am loving life. I have Graves’ and life is good.

[snelsen]

#1066248

sorry, my post is all over the map, cause I am so discouraged about not being able to shut my operative eye after OD one month ago.
I was so grateful to see lylesmom subject title this morning. It fits my situation perfectly, and this morning i am super discouraged. OD surgery 2/210 cause of compression on the optic nerve. Result is that my visual fields have improved a LOT, and my eye is definitely back in the orbit. BUT I cannot shut my upper lid now. That is a BIG problem, and the logic is not there, for it was never an issue before the surgery when my eye was really bulging out a lot! Of course I have the usual dry eyes, much tearing, using eye drops like a crazy person, and trying to find a lubricant that does not sting my eyes so badly. I saw both two docs yesterday-the neuro-opth and the eye surgeon, who did the lateral side of the OD. They just said to keep up with the drops.
The test for dry said that my left eye was VERY dry. I see the ENT doc today who did the medial side of the OD endoscopically guided by a CT. I am still in the active phase, maybe! Who knows?
My big concern. I don’t want to end up with a corneal abrasion, or a corneal transplant because my cornea is so damaged.
Do you think one of the cranial nerves that controls the upper eyelid was damaged by the surgery? Why can’t I close it now, when I could before. What can I do about this? Has anyone else found that eye lubricant and eye drops are terribly expensive? Does anyone order them online?
I really need some help and encouragement this morning. Shirley

[Bobbi]

#1066249

Yes, the eye lubricants and drops are indeed very expensive, especially when we’re instructed to use the single dose packets that contain no preservatives of any kind.

I’m sorry you cannot shut your eye, Shirley. And, you are right to be cautious about the possibilities of abrasion. I’m sure you are taking good care of yourself as a result.

I do hope that the docs can figure out how to fix things for you soon.

[Ski]

#1066250

The doctors are the best sources to say what may have happened that now keeps you from closing your eye ~ each case of TED is SO individual, they need to know absolutely everything before they can even surmise what may have happened.

I’ve heard from others that if they get a prescription from their ophthalmologist for eye drops and gel, they can then buy them from the pharmacy at their insurance co-pay rates. You may want to look into that, since it is absolutely essential you use them, and a prescription for a sufficient amount of the drops and gel could keep your costs down. In the alternative, keep track of the costs and claim them on your taxes, it’s a long shot but it may be helpful.

[snelsen]

#1066251

Thanks you for your replies. Keep’em coming, especially from anyone who had this problem and it was later corrected.
The docs don’t say much except to lubricate. I am still in the active phase, and presume, if I am EVER in the fibrotic stage, I can have correction with eyelid surgery, after my predicted numerous strabismus surgeries. That seems like a LONG TIME from now, it is hard to consider it. I will ask again for an rx for drops and lubricant. His nurse mentioned it yesterday, but when I asked him, he said he was "reluctant to do that." I do hope the procedure for tear ducts help, it is an office thing, and they can be removed.
Right now I am in the stage of discouragement, thinking that this will never ever end….
shirley

[Ski]

#1066252

At least know this: IT DOES END. Definitely. You’ll get there, it’s a slog in the meantime, but you WILL get there.

The plugs in your tear ducts can help a lot, I know a lot of people who have been thrilled with the results.

I wish you well, and I’ll pray for peace and comfort for you!

[kylesmom1007]

#1066253

Thanks to all for sharing wisdom, experience and above all, hope. This disease is very lonely for me and I get easily frustrated and discouraged – this site has been an emotional life saver for me by proving that I am not alone in my struggle nor are my reactions all that unique – you’ve all been there which in one sense sucks, but in another sense, gives me great encouragement!

TGIF!

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