[laura1701]

#1060644

I am new to this forum. I was diagnosed with Graves in 2010. Probably had it since 2005 undiagnosed. Eye issues in 2009 helped lead to me finally being diagnosed. Total thyroidectomy in 2010. Over the next 2 years my left eye continued to flare and finally got to the severe stage. I had high dose IV Pulsed Steroids for 12 weeks in 2012 for optic neuropathy in my left eye. 500 mg weekly for 6 weeks and then 250 mg weekly for 6 weeks-4.5 grams total. I had double vision, severe swelling, color vision loss, eye lid retraction and numerous other of the nasty problems many of you are familiar with. I survived the side effects of the steroids( mainly insomnia, fatigue, weight gain and the swinging emotions ) and had very good results from the steroid treatment for my left eye. My left eye slowly returned to close to normal size and 20/20 vison, but I still had some muscle issues and double vision that was corrected with prisms. I got back to doing my normal activities again with just a few limitations. In late December 2014, I had a sudden instance of severe double vison while I was driving. My prisms were useless. My right eye began to swell and bulge. These last few weeks I began to experience vision loss in the right eye. I started the same course of IV Pulse Steroids again, but no one seems to really be able to answer whether or not it is safe to take another 12 week mega dose round. I am also scheduled for orbital decompression of my right eye, but have opted to wait a few weeks longer to see if the steroids help enough and that I can continue to tolerate them. I really dread having the right eye OD surgery-since I responded well to the steroids for my left eye- I am so hopeful! If I end up doing the right eye OD, with 2 completely different eye orbits ( one decompressed and one not ) will I ever be correctable in the double vision department? I am barely able to drive now and have had to stop my other activities that involve seeing reasonably well. Anyone out there who has been down a similar path?

[snelsen]

#1183884

Laura, my own experience, plus general knowledge about steroids, is that they have their place in certain treatments, especially for short periods of time. But they should be prescribed with lots of serious considerations because of their side effects. Really serious and concerning side effects.

Steroids usually help. In the short term. Most likely you will always respond positively, i.e. improvements, in the short time after you have a course. But that is their use in TED. To prevent optic neuropathy, ie. permanent damage to the optic nerve because of pressure on the nerve. It is used to keep your/my eye safe until an OD can be done. Having said that, it seems you are getting very good care. None of us want any of these procedures, most of all an OD, which is a significant and complex surgical procedure. But we need it, when we are special people, and it seems that you and I both special people who have severe TED.

If you have a little time, (well, a LOT of time!) read some of my old posts. As I write today, many years later, my eyes are very light sensitive, must wear sun glasses, prisms in both lens of glasses, eye drops are my bestest friends, eyes are always dry, and one does not close at night, have to tape it closed.
What is good about my life? I can read well, I can drive and I can see and no double vision. I’ll take it!

Do write with any questions, or call if you like.
Shirley in SEattle

[Liz1967]

#1183885

Laura, sorry you are having a recurrence. That is something all of us with the eye disease really fear. I had optic neuropathy several months into the Graves eye disease treated with 12 weeks of IV SoluMedrol. After the sixth infusion, I had a total thyroidectomy. The optic neuropathy was fixed but the other eye signs, retraction, diplopia, etc continued to worsen and I had orbital radiation with oral steroids two months after end of steroid infusions. I never had much proptosis but had bilateral decompressions recently, which have made a world of difference in how my eyes look and feel. I hoped to avoid the decompressions but I was told by all the docs that in the case of a recurrence, it can help avoid optic nerve compression then. I have known people who have had to have the orbital radiation after failed decompressions, which in my case was what made me go for the radiation first. I would go with the decompression surgery. I am having strabismus surgery soon but I don’t know how that would work with only one eye having had decompression. My left eye has been worse all along, had the neuropathy as well as slightly more swelling, etc. but I had both eyes done. Before muscle surgery, I would be sure everything that needs to be done is done. You don’t want to have to have decompression after muscle surgery is done.

[laura1701]

#1183886

Thank you both so much for your responses. I have ended up scheduled for OD of my right eye in about 10 days. I really wanted to avoid it, because of success with the steroids on my left eye. Just the idea of more surgery and since it is ONE eye it seems likely my eyes wil not match, but they will see well -but with another version of double vision??!! I am kinda used to that-eyes that are not the same and varying double vision. The IV steroids are not helping improve my vision loss quickly enough. My doc said that many times the second flare with one eye is worse. Liz1967 how long do you have to wait for muscle surgery after you ODs? How are you getting around/along in the meantime? I did get some tempory prisms added to my glasses that have made my life much better for now! Much easier to navigate stairs and drive. My depth perception was so off. I traveled to an excellent eye center in Michigan and it makes a world of difference to see people who deal with Graves Eyes everyday-I live in a very small southern town. Shirley, I will go back and read your posts. Thank you again for sharing your experiences with TED.

[scanders]

#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…

[Liz1967]

#1183888

Laura, I also traveled to Michigan for my orbital decompressions to a center specializing in Graves eye. Bet we are going to the same place! I had the bilateral lateral wall decompressions done on March 25 of this year. Diplopia not supposed to worsen but it did. The first few days, one eye was so far in corner could not wear prisms but that has improved pretty rapidly. I am now wearing a 15 diopter press on prism (Fresnel) and I was wearing a 9 diopter prior to surgery. This eliminates the double vision at least straight ahead and my motility has improved. I will not even see the muscle surgeon in Michigan until August 20, 5 months after OD and surgery will probably be a month later. They seem to want to be positive all changes have stopped and this seems reasonable as I have gone pretty rapidly from no prism to 35 all the way down to 15. I am not driving but that is due mainly to cataracts, probably from the steroid and/or radiation. Having cataracts done in July. Seems like all we do with this disease is wait!

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