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  • gatorgirly
      Post count: 326

      As many of you probably recall, I had bilateral orbital decompression in September 2012. It has been a little more than four months. Around the three-month post-op mark, I started to experience double vision, which I never had before surgery – even during the worst of my TED – or after surgery until late December. I honestly thought it was the three or so glasses of wine I’d had at a holiday party and didn’t think much of it. A few days later, at another party, it happened again. About a week later, it happened again except I had not a sip of alcohol. I do know that I was extremely tired that night. I went to the movies and was too embarrassed to speak up but endured a three-hour movie with double vision. At one point, I put my hair in front of one of my eyes so I could make out what was on the screen.

      After that, I got the next available appointment with the oculofacial surgeon who did my OD. When I explained when it was happening and how things looked (side-by-side), he suspected the neuromuscular autoimmune condition myasthenia gravis. As we all know, having one autoimmune conditions ups the chances of having another one, and my symptoms matched perfectly with what most MG patients describe at first – double vision when tired due to weakened eye muscles. He took blood and sent it off to some special lab in Atlanta since it’s not a common test. That was three weeks ago.

      Today, I received the call I was hoping for – normal lab results. No myasthenia gravis. Great! So then what is causing my double vision? I go back to see the surgeon in two weeks but until then I’m limiting my night driving and definitely not drinking even a single drink if I know I have to drive anywhere. It seems strange that double vision – a 50/50 side effect of the OD that I had seemingly avoided – would suddenly develop three months after surgery, and only rears its ugly head when I’m very tired or have had two glasses of wine over the course of an evening (which means I’m drunk because I’m a lightweight these days).

      [size 10]And I doubt these two are related, but I still have partial numbness on the right side of my face from the OD. The surgeon tells me this could last 6-12 months. Touching my cheek almost hurts now, which is a welcome relief, as it means feeling is returning even if it’s returning in the form of pain. When I go upside in yoga, I feel fluid rush to the center of my face. I’ve had three sinus infections since the surgery, and my PCP wants to do a scan of my face if I get another one. However, I am SO pleased with the results of my surgery and everyone keeps telling me that I look like my pre-TED self. Biggest compliment ever![/size]

      Kimberly
      Online Facilitator
        Post count: 4291

        Hello – Wow, sorry to hear that this has come up, especially so long after a successful OD! Hopefully, the surgeon will be able to shed some light on what is going on and give you some further direction.

        I’m curious if you notice extra swelling in your eyes from the alcohol. I definitely notice a link between a glass of wine the night before and waking up “puffier” than usual the next morning. And if it’s more than just one glass of wine, I *really* pay the price!

        Take care!

        catstuart7
          Post count: 225

          So sorry to hear about this trouble Gatorgirly! I hope that things can resolve soon for you. It’s bad when your condition makes you want to drink but you can’t! Many times lately I’ve felt like drinking but taking liver toxic drugs makes me think twice…

          gatorgirly
            Post count: 326

            Kimberly – no swelling, just double vision. I’ve never experienced that, fortunately.

            Cat – I can’t say Graves’ makes me want to drink. I like wine for the taste. I am on a weight loss program and can only have two glasses of wine a week, so I share you sentiment of knowing better even when you really want one!

            oahz
              Post count: 29

              hi gate,

              i would like to know if this new double vision issue has been resolved, and if it, has it changed?

              snelsen
                Post count: 1909

                Gosh, I sure am sorry about this change for you. It is possible that you might be developing TED, and I sure hope that is not the case. It’s been a while since you wrote. How are you doing now?
                Shirley

                gatorgirly
                  Post count: 326

                  Shirley, I’m not developing TED because I already had it and fortunately it went cold quickly, hence the OD in the fall. This is an old post from January :)

                  Oahz, I no longer have any double vision, even when I’m tired or have had a few drinks. It seems as though it was just extreme eye muscle fatigue. Since it was worst around the holidays, that makes a lot of sense.

                  My eyes are 100% and all I need now is the upper lid lowering surgery, which is probably going to be in late summer. I have lots of weddings and showers and work events coming up, and my thyroid levels continue to be wacky, so my surgeon and I agreed to wait until mid-June to schedule anything.

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