On Thursday, Em had a follow-up appointment with the opthamologist. She had seen him 6 months ago for a regular check up but he wanted her to come back in early because of the weird eye thing she had experienced a couple months prior to that visit. That resulted in him being concerned in a bewildered sort of way and doing a test in the office. (I honestly don’t remember what it was and am too lazy to get up and look at the moment. Something to do with her optic nerve, as I recall – whatever it was, it ended up being normal.)
The wierd thing also resulted in an MRI that the neurologist ordered shortly after that, which also came back ‘normal’. The weird eye thing happened a few more times, although never so freakily as it did the first time. And, it ended up being almost a chronic thing – her eyes just tend to be dilated much of the time now. No major symptoms accompany it – her vision is a little more blurry, eyes more light sensitive and her head hurts a bit more when she is dilated but nothing she can’t live with. Honestly, we have gotten used to it and the comments I got on my original post about the experience convinced me that A) It was a pretty common thing with EDSers and B) It was likely connected to her autonomic dysfunction.
So, back we went, 6 months early, feeling much calmer about it and hoping he agreed. He did. As he stated the first time, he would be most concerned if her pupils suddenly started dilated unequally. When we told him about the time she dilated after an emotional upset (a car swerved into our lane and it scared her; her eyes were very dilated for more than an hour), he said that was totally normal. He also shared that he just did a presentation (somewhere… North Dakota, maybe?) about pupils. Some tidbits from that: fair skinned, light eyed people tend to have more dilated pupils as do younger people . Certain meds will cause dilated eyes. Females tend to have more dilated eyes. At any rate, Em checks off most of the categories he mentioned so he seemed to be implying that it may just be her. My money, however, is still on autonomic dysfunction as the cause but it really doesn’t matter at this point – although he doesn’t seem to disagree with my conclusion. We seem to have eliminated the dilation issue as a problem so we can move on…
She confided to him that her dry eyes have worsened in the past couple weeks, despite being faithful with the daily eye drops. He checked her out and said it could definitely be worse and that it was better than last time. He observed, again, that half of her medications have a drying affect that will worsen dry eyes. He also observed that she probably needs all of them, which she does. So, the goal is to do what we can to treat the dry eyes. For now he suggests just increasing the frequency of the drops. He also held out the possibility of plugging the tear ducts to increase the moisture on her eyes. It may be an option in the future but he didn’t think it necessary right now. The winter months are particularly dry, so we may need to do more if it becomes more of a problem.
She talked about how her eyes skip and jump and get tired. He tested her eyes and said she has mild astigmatism. She would benefit from glasses but it is not urgent. She sees 20/20 out of her left eye and 20/30 out of her right. He wants us to go to an optician, get her eyes checked again and see about glasses for her. I made an off hand comment about how an EDSers eyes can be so changeable from moment to moment and day to day. He responded with ‘Good point’ and talked about the shape of the cornea and so on. And I am pretty sure he was sincere in thinking it a good point. If not, he sure played it well enough that I believed him… After 3 visits with this guy, I still like him which is more than I can say for our previous opthamologist! It doesn’t hurt that he has simply accepted the fact that Em is on Diamox for her headaches and doesn’t say a word about it, so, yeah, he is ok and I really hope he stays that way!
We also had a chance to do a little EDS awareness with the nurse, which is always a good thing. She was a perky, chatty thing and asked about Em’s med list and conditions – and listened and asked questions when we told her about EDS and company. Yes, she said goofy things like ‘girl, you are too young for all this’ and ‘well, you are lucky it isn’t the more serious type of EDS, right?’ and ‘you just have way too much going on’ but, she listened and was sincerely interested so she gets serious points for that.
All in all it was a good appointment and we don’t have to go back for a year, unless we need to.