[scanders]

#1060359

So, the eye doctor says my eye pressure is still increased; not worse, but not better. He had me on ketorolac eye drops for inflammation, and now has added xalatan eye drops, usually given for glaucoma, to reduce pressure. He said I don’t have glaucoma (my grandma did, and I believe it can be hereditary, so I was worried about that.) This isn’t a treatment I’ve seen talked about much for TED, although I’m happy not to need the steroids. At the same time, I’ve been upgraded to moderate to severe due to the constant double vision, even with down gaze (close up work is pretty challenging.) I have a prism that works for distance, although I’m starting to have some intermittent double vision while wearing the prism. I go back for a recheck in 2 months. Does this sound like a reasonable/standard course of action? (Because of a little trouble with an endocrinologist, I’m having some trust issues with doctors at the moment, and find myself questioning everything.)
Thanks for the help.

[Kimberly]

#1182163

Hello – I’m not personally familiar with using meds for glaucoma to try and bring down intraocular pressure due to TED, but I’m a fellow patient, not a doc! (I do know that TED can be misdiagnosed as glaucoma, as they both cause eleveated IOP). Hopefully, others here who have experience with TED will jump in here. If you are interested in a second opinion, this search engine is a good place to start:

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http://www.asoprs.org/custom/directory/?pageid=3657&showTitle=1

[PattiMeg]

#1182164

Hi Scanders,
I have had alot of experience with the issues you are having so I will chime in with my two cents. My understanding is that the increased ocular pressure is due to the eye muscle changes related to TED and their lack of “flexibility” if you will. My ocular pressure on direct gaze is high/normal; when I look up the pressure shoots to 30. I have been on Combigen drops for over 1 1/2 years now. I too have pretty bad double vision that is managed pretty well with the prisms. I see the eye doc every 3 months and he checks things out, making sure that the optic nerve is healthy. At some point down the road I will have the strabismus surgery to correct the double vision but I have had 6 surgeries in the last 3 years for these darn eyes so I am in no hurry for another. It sounds to me like the eye doctor is doing the right thing, watching things carefully and monitoring for any changes in visual acuity.

[scanders]

#1182165

Thank you for the reassurance! That makes sense. He said there was a big increase in pressure with looking up; direct gaze is high/normal. He said something about being prepared for surgery as an inevitability sooner rather than later at this point. I think I need to start asking for more explanations, since I didn’t really think any surgery could be considered until the hot phase settles (pending threat to the optic nerve), and it sure hasn’t settled down yet.
The prism works well for distance and general vision. Close up work remains a challenge with the double vision. Today I’m trying readers with transluscent tape on one lens for occlusion. I like the effect of a patch better for acuity, but cosmetically, the tape might be better. Actually, either one is funny looking. I just need to get over it. After all, my uncovered eyes look pretty odd, too. Mostly, I want what I can’t have right now–my old eyes back. (This last part is just venting.) Thanks again!

[snelsen]

#1182166

Hi scanders!
A brief post to you tonight! If you use the search engine, look for my name and TED, you will find a lot! I had (have) severe TED, understand all that you are experiencing with the dumb disease. Hated it.

You have a very good understanding of a difficult part of TED and surgery. Yes, the right thing to do is wait until the cold phase (vision not changing every friggin’ day!) before doing corrective surgery, the first one being strabismus for double vision. This was, by far, the most best wonderful marvelous procedure!
I immediately had mono vision, even while still in the OR!

I am tired tonight, so will be brief (before I go to bed, tape my eye closed cause it won’t stay closed unless I DO! GRR!)

I think your doc is doing the right thing. IOC is not a happy experience for eyes, so reducing the pressure is very important. Regardless of the cause.
And of course, he is checking visual acuity, which is critical. Be sure to report pronto if you observe changes in the color red, and/or things are not as sharp as you thing they should be. I did have optic neuropathy, and did have and OD in the active phase for this reason.

Like PattiMeg, I have had multiple (10 or 11) surgeries on my eyes/eyelids cause of TED. Some were a disaster for me, big time. Will save that for another day.

Welcome (smelcome!) to the forum you wish you’d never heard of! But it saved my life and skin and sanity many times with Graves’ and TED so so glad you found it!!!
Shirley

[scanders]

#1182167

Thanks Shirley! I had a chance to go back and look up past posts as you suggested. It was very helpful.
It’s also helpful to know that the others that have “gone before” know where I’m coming from, and can understand when I get frustrated, (and maybe even a little depressed), or even just need a little help understanding what’s happening, (like I just did.) I might not be very happy about the reason I needed to find you all, but I am sure glad I found you!

[Author]

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