[scanders]

#1060409

I think I just need to vent a little. My second prism has stopped working to keep me in single vision. It was intermittent over the past few weeks, and today the double vision became constant again. This is just a little discouraging. Two weeks ago when I saw the eye doctors there was talk that things were stabilizing and perhaps soon the muscle surgery could happen. Then I brought up that pesky old thyroid that just won’t settle down, and they put the brakes on that plan. Then, right on cue, the eyes started acting up. (And, because I’m feeling a bit sorry for my bug-eyed self at the moment, I wouldn’t be surprised if I’m still a bit on the hyper side, not that I’d even know what normal thyroid levels feel like at this point.)

I think that I won’t rush out for another prism if things are changing this fast. I suppose I’ll just have to either tape up a lens of my distance glasses for occlusion, or patch my eye. The patch actually works best, but I’m a little self conscious about it outside of my house. I already have tape on some readers for close up work. I did drive home today with tape on my lens and was all worried about it, until I realized that I’ve been driving with a hand over my eye for days already! And it’s legal in MN to drive with one eye, per the orthoptist.

Anyway, now I just keep waiting. And figure out how to keep on keeping on one day at a time. (And one hour at a time when trying to get through my workday.) Worst part of the Graves for me is the eye disease, especially the double vision.

Thanks for letting me vent. I expect to be more positive by morning.

[Kimberly]

#1182459

Hoping that today is a better day – and that this latest adjustment settles down enough to get you back in to prisms while waiting on next steps!

[scanders]

#1182460

Thanks, Kimberly. I’m trying to accept that it could be a lot longer than I’d hoped before there can be a fix with the eyes. And I’m thankful that while this is frustrating, at least it’s not sight-threatening. (Guess I’ve got a little optimism after all? I’m trying…)

[snelsen]

#1182461

Hi scanders,
I feel your pain and frustration about all of this. A couple of comments from my own experience. By now you have a few more days to evaluate your latest change. I did get several different prisms when the double vision occurred again, and they did help. Like you, patching one lens or eye, makes it magically ok with single vision. A glimpse into what a normal life will be like some day.

I know I told you in the other thread that NONE of my eye docs or ends did not correlation at all between thyroid labs and TED. I wonder if your surgeons are simply reacting to your concern about your thyroid labs (totally have forgotten what they are now, did the surgeons look at them? or did they make their decision to wait because of your concern?)

I don’t claim to dismiss thyroid hormone labs and TED decisions, but I kind of do, because every doc I went to for TED, had no interest in even knowing them. This includes the endos, the neuro-ophthalmologists, the ends, the rest of the surgeons. My labs has stated that I have been hyper for years and years (meaning on the lower end of the range of .4-4.5. This is not one of the variables they considered when deciding to move on to do the first surgery. I had double vision for so long (over a year) and it was so life-changing, that we decided to do the strabismus surgery to achieve mono vision, and if indeed, there were more changes after that surgery to double vision again, we’d just do the surgery again and tweak the muscles a little bit. I was more than willing to do this. It is a simple procedure, with few risks if done by a doc who does it all the time. I have found that those docs are pediatric eye surgeons.

I guess, in my case, it would have taken a lot of convincing for me to wait any longer for the strabismus surgery. I am not saying it is right. I am saying that I’d be in the looney bin, never to come out, if I continued with double vision. We’re all different, and that was my line in the sand. I am glad the docs felt the same way, and proceeded to go ahead with strabismus surgery, even though my eyes were were not rock stable. They said that it was possible to need to re-do the surgery if double vision recurred,and i did not care at all, just said, “bring it on!”

I wish you the best of the best. Those of us who have had severe TED have had even a more traumatic experience that those with mild TED. I still have to tape one eye closed at night. This will be a lifetime thing.

Shirley

[scanders]

#1182462

Thanks Shirley! It wasn’t that I was concerned, but I was curious, so I asked. They looked at them after I asked if it mattered. Like I said, I don’t know everything yet about this stuff. And since that last appointment I have read some pretty reliable references and guidelines that state the hyperthyroidism should be stable. Maybe not in remission, but stable, so I don’t think I can necessarily fault them at the end of the day. I am not stable yet. In the past 6 months I’ve been very hyper, very hypo, and now hyper again. I’ll have labs next week. My eyes are still changing a fair amount, as evidenced by this latest bump in the road. (It hasn’t gotten any better.) The strabismus surgeon is a pediatric surgeon. I’ll see him again next month, and broach this subject again. I think he was the least concerned of the doctors about the thyroid itself in relation to the eyes, and since this is the most pressing problem, he is following me for now. But the two eye doctors work pretty closely together with the graves patients, so we’ll see how things shake out. I do sense that they would like to fix my eyes as much as I want them to.

The prism was noticeable, but the tape on the lens or the patch sure gets even more attention. My depth perception is way off. (Golf league started Monday–how fun was that with one eye?) If I truly can’t stand it, I can get another prism, but I’m trying to wait until the appointment in May. I’d hope we’d have a better idea of how fast and how much change has occurred. (Even the Fresnel prisms can add up, after all.) Maybe, just maybe, one of my prisms could work again? Is there ever any improvement? I’ve never been good at being patient.

Thanks again for the support on this board! It goes a long way knowing that other people understand what it’s like!

[scanders]

#1182463

Still a bit discouraged. While I mostly work as a department head, I like to help out the floor nurses when I can–they like that I’m willing to help out. I’ve even taken whole shifts in a pinch. But I’ve found there are some nursing tasks that I just can’t do right now because of my vision. (Ironically enough, administering eye drops to patients is incredibly iffy because of my lack of depth perception.) My employer has come to expect that I will help out. So I had to first acknowledge that this really is affecting me, then ask my eye doctor for a letter supporting this. Sigh…

But, I also recognize that I’m very lucky that I’m able to still do my primary job. What if hands-on nursing was my primary job?! I’d be in big trouble as far as my livelihood. So while I occasionally whine, I also count my blessings that my employer is willing to work with me through this.

Still advised by eye doctor to wait a bit if I can before getting a different prism to see if the changes in my eyes have stabilized somewhat. (Glad Press and Seal wrap makes a nice alternative to Scotch Magic tape on the lens. Nice, even layer to cover the whole lens. Stays on nicely, too.)

[Kimberly]

#1182464

Hoping that you can get the go-ahead to try that new prism soon!

If you are comfortable discussing the challenges of TED with your team, this would definitely be a learning experience for everyone. Of course, that’s a really personal decision. I was in a corporate job when diagnosed. I had one family member at the company, and told one other person that I had “thyroid issues”. Mostly because my biggest issue was fatigue, and I just didn’t have the energy to explain Graves’ disease to anyone at the time.

[Kimberly]

#1182465

Hoping that you can get the go-ahead to try that new prism soon!

If you are comfortable discussing the challenges of TED with your team, this would definitely be a learning experience for everyone. Of course, that’s a really personal decision. I was in a corporate job when diagnosed. I had one family member at the company, and told one other person that I had “thyroid issues”. Mostly because my biggest issue was fatigue, and I just didn’t have the energy to explain Graves’ disease to anyone at the time.

[scanders]

#1182466

I hope, too, that the new prism can happen soon. I see the eye doc in 2 weeks.

I’ve decided that if people ask, I will share. I work in healthcare, and many of my staff were worried about me last summer (even before I realized there was anything abnormal going on.) Some tried to give me helpful advice for diagnosis. So, I felt it only fair to clue them in when I found out it was Graves, and then TED. One nursing assistant that’s in nursing school told me by sharing my experience, I helped her pass her endocrinology unit!

I am fortunate to have a great team to work with, and they’ve been very supportive. (But I still feel like I’m “giving in” to the disease by acknowledging that I’ve got some visual limitations…but I’ve got them, whether I like it or not.)

[scanders]

#1182467

Saw eye doctor today and no new prism for me. After the orthoptist tried for quite a while to make it work, the chin tilt needed already hurt my neck. I tried to tell him to maybe check with the doc and see what he thinks first, which he finally did. Anyway, my eyes are not any more crossed (yea!), and the vision itself is actually stable, but the muscles are so tight my eyes can’t look up with a normal range of motion, which is why I can’t seem to see single now with a prism without sticking my chin up in the air from the get-go. (That’s if I understood that right.) So they put some 3M professional grade film on one lens of my glasses (looks about the same as the press and seal wrap I’d been using), and now we wait and see some more for things to stabilize, as there’s still a fair bit of inflammation, and they would like the thyroid levels to at least be sort of stable. He’s not quite convinced that I won’t need an OD, at least for my right eye, but will defer to the other eye doc for that decision in a few months.

Honestly, it’s about a horse apiece as far using a prism or covering a lens, as far as actual vision and acuity. Neither is great, and both allow me to see single but I don’t get the neck pain with the film.

Christy (who’s still looking to find patience with this whole process…)

[Kimberly]

#1182468

Wow, that’s frustrating – although at least the DV isn’t getting *worse*. Are you able to switch the film from lens to lens so that you aren’t overusing one eye all the time?

Take care!

[scanders]

#1182469

No, it’s stuck on pretty well. It’s over my weaker eye, since my glasses hadn’t kept up with my Rx as my contacts had, and it was a bit fuzzy compared to my other eye. Now when I do cover that weaker eye, I get fall-down dizzy trying to navigate (balance? depth perception?), although I think I can see well enough with it to read most of the time. The eye doctor didn’t seem to think it was an issue keeping the same eye blurred. We’ll see.

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