[josimadera]

#1060116

I’d like to hear from anyone who has had strabismus surgery and what it was like for them and what recovery entailed.

My biggest question is about adjustable sutures – did you have them and where were they? Are they under the eyelid and does the doctor need to pull open the lid to get to the suture, or are they on the outside of the skin?

[snelsen]

#1180487

Hi, I have had numerous surgical procedures for my severe TED.

Strabismus was my favorite! I had severe double vision. I can’t address the adjustable sutures, b/c I did not have them. But in the OR, they woke me up several times, had me look at letters, eye chart, etc., to see if I had mono vision or double vision.

The recovery was a piece of cake. I went for a gentle walk the same afternoon.
YOu do have to heal, so straining, working out, swimming, are contra indicated.

I think the adjustable sutures are visible. Surgeons have different techniques. Best thing to do is make an appointment with the surgeons who will do the work.

Double vision is super hard to have. This surgery really made a positive difference to me, in a world where TED has made a horrible negative impact on my world.
Shirley

[Gabe]

#1180488

Thanks for starting this thread. Shirley, thanks for answering! I’ve had disturbing double vision now for about 8 weeks that’s been corrected by prisms (with 2 adjustments). Once my TED goes inactive my guess is I’ll be a candidate for this surgery. Unless this self corrects….is that possible? Great to hear that the surgery is relatively easy.

Thanks! Karen

[snelsen]

#1180489

I tried all kinds of prisms. They do help some people. I am glad they helped you. My TED appeared almost 50 years after Graves’. Not encouraging news.
I had no idea what it was. Just figured I needed a good eye exam and new glasses.

At this time, I have “6 up” prisms ground in the lens’s of my very expensive glasses. I am sorry to say that I am having “new onset double vision” mostly in the morning.

I have found TED to be the single most devastating health issue I have ever had. And I have had many. Two breast cancers, one super severe, heart damage from the chemo, lots of osteoarthritis in knees..but TED tops it all.
I am so glad that some people have a mild case.

Shirley

[josimadera]

#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.

[Gabe]

#1180491

Wow Joseimadera… you’ve had a rough go of it. I hope you get some relief. I don’t have half the issues that you have and it’s already making me crazy. Right now I’m typing this with my chin up in the air and my head tilted to the left because the prisms in my glasses don’t work all the time. Some days worse than others.

It sounds like Shirley is a good one to talk with about Strabismus surgery and hopefully others will chime in. I can certainly say that I would be anxious about being awakened during surgery while the doc is stitching my eyes… holy moly.

I really hope you get some help and relief from your eye issues. This eye stuff is very scary…worse than the hyper symptoms by far…

Best wishes,,, Karen

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