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in reply to: Strabismus surgery…. #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.

[scanders]

in reply to: Strabismus surgery…. #1184097

I’d sure agree with the “hellish” descriptor! But just wait until it’s done! A whole new world! I have to say that my period with the double vision was probably the only “dark” time I’ve had in my life. (I look back and have no idea how I was driving, even with the lens occluded…lucky I didn’t hurt anyone…) Anyway, it’s just so amazing, now I feel as if “the light is back”, if that makes sense. It was so worth it! Best of luck!

[scanders]

in reply to: Strabismus surgery…. #1184094

I guess that depends on what you mean by “shortly”? I seem to recall I just gradually had more periods of single vision, and by about 4 weeks, I think, I had more single than double. But I worked at it, spending time each day “fusing”. They didn’t suggest even looking at prismatic correction until I was at least 3 months out because of the constant changes while healing, and then, surprisingly (according to the doc), I didn’t need it.
I still have convergence insufficiency up close. There are exercises for that–they just didn’t work for me. I think I’ve adapted for the most part, and I could always get a bit of prism for reading if I want at some point.

Like I said before, I wished I’d done my homework as you’re doing so I would have been better prepared, but given the outcome, no regrets!

[scanders]

in reply to: Strabismus surgery…. #1184092

I could watch TV and read, but I think at first I was pretty light sensitive or something, so I was a little limited. I think I was using ice. I still had my lens occluded initially, and I was driving after a few days. I spent as much time as I could, however, with my eye uncovered trying to fuse. I did learn pretty quickly not to move my eyes quickly, if that makes sense, to avoid the shooting pain. I’d say that was improved a lot in 4-6 weeks. I initially had an antibiotic eye ointment prescribed, and I could use eye drops for lubrication. I also used eye ointment at night for lubrication (still do) when the course of prescription eye ointment was done. I finally called the surgeon to ask how much longer I could expect the scratchy feeling from the sutures, because if I knew how much longer, I thought I could tough it out since it had to be close to time for that last one to dissolve. He told me to use the tobramycin ointment again, and sure enough, that helped a lot in a day or so. That was maybe at 6-7 weeks? So I wish I hadn’t been trying to be so “brave”, because if I’d asked sooner about how long to expect the suture discomfort, I could have had the advice sooner about the ointment and alleviated some pain. The lubrication ointment wasn’t enough. (We don’t know what we don’t know. I’d never had much wrong with me before Graves and TED.) I opted not to have anything stronger than extra strength Tylenol–but I made that decision while I was still under the influence of the anesthetic. In hindsight, probably not my brightest move. I toughed it out with the Tylenol. I had surgery on Thursday, and went back to work on Tuesday. Not enough time, I think, although who knows? Again, many people report needing very little down time, and not really needing pain meds, and hopefully you’ll be one of them!

[scanders]

in reply to: Strabismus surgery…. #1184089

Another point of view. First, the end of result of the strabismus surgery is better than I was led to believe it would be. (But then, maybe they tell us that so we don’t get our hopes up?) I don’t have a prism at the moment, and on some days can even wear contacts. Unless I’m really tired, I pretty much have single vision, at least straight ahead. Before surgery I wasn’t even able to use a prism, so had a lens of my glasses occluded. So yes, this was a life changing event.

I had bilateral muscle surgery in January, with an adjustable suture in my right eye, and four muscles moved in total. I’d had bilateral OD the September before. My experience was the opposite of many, apparently. My OD was done endoscopically and that recovery was pretty uneventful from a comfort standpoint. I don’t know if it was the surgical approach used, or the relief of the pre-surgical pain/pressure? But the strabismus surgery was a different story. I’d read many accounts of how easy and relatively painless the recovery was, so I was a little unprepared for how uncomfortable my recovery was. (The surgeon did say I had one of the toughest Graves muscles he’s ever worked on.) It hurt on the surface, it hurt deep when I moved my eyes to focus, the sutures were even noticeable (they felt big and scratchy) for a longer time than I thought I would feel them. Not to worry you, because again, the end result has been so worth it! But I think it bears mentioning that there could be some discomfort. (I don’t consider myself wimpy–I just didn’t do my homework as well as I should have.) I have noticed that it seems those that had a more difficult course after the OD seem to report a better experience after the muscle surgery, so hopefully that will be the case for you!

[scanders]

in reply to: Where should labs fall? #1184069

Thank you, Kimberly! Very helpful. I appreciate your perspective. (I think what would really help is if I could remember what my “normal” felt like, but I have no idea…)

[scanders]

in reply to: Success with diet changes? #1183970

I’ve read posts where people swear that dietary changes made the difference in managing their disease and even reaching remission. Early on in this journey I thought that sounded very promising, and I was hopeful for some non-pharmacological intervention, so I made some big diet changes. (I even gave up my favorite diet soda.) My endo said she had no evidence that diet made a difference, but there was certainly no harm in trying. Lo and behold, my levels dropped. It worked so well, I became clinically hypo. Then I became hyper, without changing anything, figured “oh, well” and added my diet soda back, aspartame and all. My levels came back down in spite of that. So, for me, diet didn’t make much of a difference. Not that I don’t try to eat healthy, and I do pretty well. But for me, the diet didn’t seem to make a difference. (It’s all about the antibodies, and apparently I haven’t figured out yet just what makes mine tick.) For others, however, diet may help. It might even be that a different diet can improve health in general, and thus one feels better even with graves? Or feel better equipped to cope with it? Best of luck!

[scanders]

in reply to: Things my Forum Friends have taught me … #1183955

Thank you Flora! A timely reminder for me to be patient, which as you know is sometimes easier said than done.

[scanders]

in reply to: Anyone out there who has had IV steroids more than once? Left eye for vision loss 2012. 2015 all over again in my right eye. #1183887

If it makes you feel any better, I had OD to both eyes at the same time, and one eye really doesn’t match the other. Retraction, excess tissue, etc since one was affected so much more beforehand. I had the OD in September, and had the muscle surgery in January. I expect the timing depends on each person’s progress after the OD. My double vision pre-OD had gotten so that I couldn’t use a prism and had one lens occluded, so it was hard to gauge how it was impacted by OD, other than one eye moved closer to my nose. They measured the changes in my eyes, and when they were stable for long enough, we were able to move forward with the muscle surgery. Single vision, and along with it the return of depth perception, is so amazingly wonderful! Check up next week to see if anything needs to be done with my lids. As my eye doctor said, this can be a long journey…

[scanders]

in reply to: Graves disease and tinnitus and/or hearing loss? #1183834

I ended up on this crazy ear ride because my ophthalmologist suggested a daily anti-inflammatory like aspirin as he thought there was some inflammation from the eye disease. I realized that the tinnitus had become constant, and before starting to take the aspirin thought I should check with my GP to see if even in small doses it could make the tinnitus worse. She had to see me, since apparently I’d failed to mention in the past that I had tinnitus at all. She then sent me to the audiology/ENT appointment. ENT said try the aspirin and see what happens as far as the ringing. Meanwhile, the original issue of increasing eye symptoms, improved. So, no aspirin, after all that. I do have some hearing loss now that they’ll watch, along with the tinnitus. They may do an MRI, but really aren’t exploring any auto immune connection, but I have to wonder. However, it’s entirely possible that symptoms were present pre-Graves and I just didn’t notice. (I doubt it, but it’s possible…)

[scanders]

in reply to: Graves disease and tinnitus and/or hearing loss? #1183831

Thanks. My guess is that it’s a separate issue, although the timing is pretty coincidental with the onset of graves. It’s just gotten so much worse lately. Endo says it’s possibly related, but not likely. (Oddly, my ears ring louder with hot flashes. Some weird hormonal connection, or I’ve totally gone off the rails! LOL!) Anyway, I’ve read that tinnitus is difficult to treat, most likely will be with me forever, and most often comes with hearing loss. So while I’ll continue to hope it might be related to Graves and will go away when I’m in remission, although my levels have been pretty stable the last few months, except for TSH; my next best resolution is to at least have the intensity/loudness damp down a bit. I guess I’ll just wait for the audiology/ENT appointment next week to learn more. No use over-stressing about this.

[scanders]

in reply to: Double Vision #1183814

I have severe TED, too. I did a lot of reading, and unfortunately I didn’t come across any credible sources that indicated the double vision would correct itself. And every medical professional told me I’d need surgery to correct the double vision, or possibly I could live with prismatic correction. But then the double vision became worse, and I couldn’t even utilize a prism. I had to have a lens of my glasses covered from last April until this January when I had strabismus surgery. (I also had bilateral decompression last September.) My right eye had basically moved over by my nose. (The surgeon said I had one of the toughest Graves muscles he’s ever worked on.) Now I’m left with some intermittent double vision at distance and near, but it’s quite manageable at the moment (I can still get my left eye closed.)I also know that if it gets worse, prism is an option. But by and large I have single vision! The doctors led me to believe that I would still need prism, and that it would be difficult to correct my eye position fully. (Maybe they tell everyone that so we don’t get our hopes up?)
My doctor chose not to treat with steroids unless my optic nerve became threatened. He explained, as Shirley and liz did, that the benefits typically only last as long as the steroid is continued, and he didn’t feel the risk of side effect was worth the benefit in my case since it was clear I was going to need the corrective surgery. I was monitored closely for changes in my vision, of course.
How was your appointment today?

[scanders]

in reply to: On ATD two years-plus? #1183739

Hi flora,

Hang in there! I’m closing in on the two year mark myself, and am also very sensitive to changes in the hormone levels. It sure doesn’t take much change, even within the normal range, to feel kind of yucky. (To be honest, I’m not exactly sure what “normal” feels like anymore.) I seem to feel especially bad with low normal. Bad, bad brain fog. It took a while for my endo to come to the conclusion that it was thyroid related since the levels were technically “normal”. Anyway, while I still feel up and down, I’m encouraged that I’ve actually kept the same dosing for two months with relatively stable labs. My endo is pleasantly surprised. (My GP shared that the endo doesn’t think this thing will “burn out” and I’ll eventually need TT. We’ll see. As Kimberly says, there’s no “do over” with a TT.)
So yep, it’s a journey, for sure. I’m trying to remember that I’m gaining knowledge and perspective (very helpful with my nursing practice). I think that even after two years I have quite a ways to go with this patience thing that Graves demands.

[scanders]

in reply to: TED (thyroid eye disease) seven years later #1183623

Thanks for sharing, Shirley! I so admire how strong you’ve been through it all, but I sure wish you could get some relief! You are an inspiration for the rest of us.

[scanders]

in reply to: Methimazole trigger Graves eye? #1183418

Sounds as if things are moving in the right direction! Great news about the pressure coming down.

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