[Liz1967]

#1184102

Laura, I had my OD surgeries at Kellogg Last March, after which my diplopia worsened so prisms weren’t working which was not expected as I only had lateral walls. He thought maybe hematoma. At any rate, it rapidly improved so by September I was in a 12 diopter prism. He wanted to be sure I had achieved maximum improvement before muscle surgery, thus the 11 month wait. Because I have no vertical diplopia and thus no vertical muscles will be moved, he could go ahead and do lids in September as both eyes retracted, left a lot. Now my left lid is a bit droopy and right could maybe come down a tiny bit but looks normal. I used to tape lids at night over ointment or use the press and seal wrap under sleep mask, and use drops every hour during the day. Now I can go 5 hours sometimes without drops. At night I now use ointment in both eyes and will usually but not always put a square of regular Saran Wrap over the non droopy eye, the one he thought might still be high. The lid surgery has made a huge difference. I see him again in March. I am not sure what if anything will be done on the droopy lid, which does not interfere with vision, not that droopy, or if he wants to lower the other one more. I have a feeling we will wait yet again. My muscle surgery needs to correct torsion also. My two side by side images are also tilted, which gives the brain a lot to try to correct. I live in the Cincinnati area so it is a five hour drive for us to Kellogg, well worth it but have to contend with winter weather. We try to schedule to avoid the worst weather months but a bit worried about late February; however, would be nice to be done with everything by summer!

Shirley, I am hoping since my ODs were a bit difficult, I will have your experience with the muscles.

[laura1701]

#1184103

I am 3 weeks out from my bilateral strabismus surgery. The docs said everything went fine. I am starting to have wonderful periods of single vision (in certain fields of gaze)without even thinking about it! I did not expect to have to work this hard to see after the strabismus surgery, but remain hopeful and am trying to be patient! No prism glasses right now-so it is just my poor eyes and brain working so hard! This has been a very uncomfortable recovery. I cannot call this a piece of cake. Burning, stinging, watering, nauseating, painful to move my eyes or try to focus-you name it. My eyes looked like something out of a horror movie until a couple of days ago! I should have done this right before Halloween for the best costume ever. I think I am finally over the worst of it and can start to really relish the amazing periods of single vision. I may need some upper and lower eyelid adjustments? My right eye is even less able to close properly now. Something with the surgery affected my lower eyelid. What is eyelid surgery like? I was REALLY hoping this would be the last surgery. Do I need to start a new thread about eyelid surgery? Thanks again to those who have gone through this before me and shared their stories.

[Liz1967]

#1184104

Laura, I was hoping you would post about your surgery. I am having mine in two weeks also at Kellogg and getting nervous. Do you know how many muscles they did on each eye? I had the lids done six months ago, six months after the decompressions. The surgery was not bad at all but I had only upper lids, not lower. My left eye is now a bit droopy rather than a lot retracted and right eye is fine. I am so much more comfortable, only use drops a couple of times a day. Still use ointment at night and cover lightly with plain plastic wrap on one eye. They did lids first as I have no vertical diplopia so did not expect position of eye with respect to lids to change and I was so uncomfortable with retracted lids. I do have torsional issues so will do another muscle on one eye. Hope you feel better soon and stay in single vision soon.

[laura1701]

#1184105

Oh Liz-I will be thinking about you. Is your surgery the last week in Feb or the first week in March? Are you having the eye measurement appointment on a Tuesday and surgery on Wednesday? I will be back up there for my post op appointment the first week in March. We may cross paths? I had 2 muscles in the right eye and 1 in the left eye repositioned. It is funny-I had torsion-sight picture tilting to the left- in my right eye and after surgery it appears to tilt to the right. No torsion in the left eye. My right eye is still pretty red. Fortunately I am not scaring people quite so much when they see my eyes now!! I don’t know if I will need lower and upper lids repaired or not. My upper right lid has been retracted for the last year. I guess I have slight retraction of the upper left as well. The new problem is my lower right lid droops, so the white shows below the iris and eye drys out quickly. I would so prefer no more surgeries, but will wait and see how things turn out as my eyes continue to heal. Would you consider more lid correction surgery after your strabismus surgery?

I had ordered these little round ice gel packs before surgery and they were wonderful. It was too painful to have actual ice packs or any weight on my eyes and the sutures. These round gels are pliable, small and I held them one at a time on my poor eyes-so I could control the weight. In the last week or so I have been using warm compresses on my eyes. Also, audio books were lifesaver. I think I even listened some in recovery. I could not really read easily until a few days ago. Kudos to those of you who go back to work right away.

[Liz1967]

#1184106

Laura, my surgery is February 26. They will do measurements an hour prior to surgery. I am pretty sure nothing has changed in past three months. We will just miss each other! I will have two muscles in left eye, horizontal and torsion, and one in right eye for horizontal. Thanks for the gel pack tip too. I am not sure if we are allowed to mention surgeon names, but my docs first name starts with “s ” for the muscles.
The lid surgery was a definite game changer as far as comfort. Can’t tell you the difference it has made. I would try to correct the droopy lid, it is pretty noticeable, but not if it would sacrifice comfort. The other non droopy eye is comfortable so I am hoping raising the lid is possible.
I was so hoping your experience would be easier, for your sake and mine! Another poster here had a similar experience to yours so guess I will be prepared for it at least. Keep us updated on your progress.

[scanders]

#1184107

Hi Laura,
Happy to hear you’re having periods of single vision! Hopefully that trend will continue for you, as it did for me. I’m over a year out and haven’t needed prismatic correction, although it might come into play at some point for close up work. I have a convergence insufficiency now. I still have lid retraction (right eye doesn’t quite close), as well as some excess tissue above my right eye, and both can be corrected surgically. But the surgeon feels in my case there have been some changes, so he is waiting. (Relates to still having a thyroid and some fluctuating thyroid levels, apparently.) It might be a bit soon to determine what you might need for your lids, but I think you’re in really good hands at Kellog. Hopefully you won’t have as long of a wait for the final fix.

[snelsen]

#1184108

I found it exceedingly hard to WAIT for the strabismus surgery after my OD. But it is worth the wait, for then the measurements will be accurate. Although the strabismus surgery recovery is easier than OD, it has been my understanding from the experience of others, that double vision remained or recurred, resulting in repeating the surgery.

In my own experience, none of the “eye docs,” or TED docs, seemed to make any decisions, or even check my thyroid labs. I was the one who provided them. Perhaps this is because I had Graves’ so long ago,and they knew them.

Kimberly is a good source for knowing the recent thinking and research of how TED docs incorporate Graves’ labs (other than being hyper or hypo) into surgical decisions

As I have said in prior posts, I saw HOPE and happiness in the operating room, when they asked me to look at the wall, and I saw one of objects, rather than two!

Scanders, do you tape your eye closed when you sleep? If so, I have the best tape in the world for you to know about! It is called Mepitac.

[Kimberly]

#1184109

snelsen wrote:

Kimberly is a good source for knowing the recent thinking and research of how TED docs incorporate Graves’ labs (other than being hyper or hypo) into surgical decisions

This is actually an area that is subject to controversy. Some doctors won’t even consider surgery if TSI (which measures stimulating antibodies) is still elevated. Other docs don’t use TSI at all, but rely solely on whether eye signs and symptoms are fully stable (not getting either worse *or* better) to determine when it’s appropriate to do surgery. Other docs use a combination in making the decision as to when TED has reached the “cold” or stable phase.

[Liz1967]

#1184110

No one at Kellogg has checked antibodies because my thyroid has been removed and antibodies go down within a year of that. They do look at stability but the only changes I have had since six months postop TT when the eye disease reached the cold stage have been the result of mechanical manipulation during the ODs and lid surgeries. Actually, the only docs at Kellogg who look at Free Ts or TSH is anesthesia requesting them preop general anesthesia. I think if you still have a thyroid, or if the eye disease occurred many years after TT, it might be different.

[scanders]

#1184111

Hi Shirley,
I quit taping somewhere along the line after OD, just using ointment at bedtime. I’m not sure why, but maybe not my brightest move. Sometimes I really notice the retraction, and sometimes not so bad. However, my eyes have felt worse (scratchy and dry) the last few months and I’ve started restasis drops. So now I wonder if resuming taping might help with discomfort? For some reason, it hadn’t occurred to me. Brain fog when my levels went low? Sigh… I use the soft blue Nexcare tape. Repositionable, doesn’t pull out my eyelashes, pretty comfortable. It’s gone up in price in the past year, though. (I’d complain about that after what the restasis cost? Of course I’m hoping that pretty soon he can just fix my lid.

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