[daggerlee]

#1059987

Hi all, I’m posting on behalf of my mother. She was diagnosed with GD about a year ago, and has been suffering from TED for the last 9 months. Up until recently, her symptoms were double vision and eye protrusion. The doctor diagnosed her GD as ‘mild’ and put her on thyroid hormones but not much else.

At the end of April this year, all of a sudden her vision deteriorated, with loss of color and she started seeing white. The doctor did a CT scan and recommended emergency OD surgery on both eyes. The doctor said she would remove ‘as much as she could’ from the orbital sockets and that it would lead to 20-30% increased capacity.

My mom underwent steroid injections for 5 days prior to the surgery. After steroid injections, the doctor said that vision in her left eye returned to normal (20/20, full color) but her right eye was still 20/50, and about 11/14 on perception of color.

She had OD on her right eye (the bad one) this past Tuesday. The surgery went fine, but her vision still hasn’t fully returned in that eye, it’s still blurry. She is scheduled for OD surgery on her left eye this upcoming Tuesday.

She’s worried that the OD surgery on her left eye (the one with 20/20 vision) will leave that eye with decreased vision as well. After reading some posts on this forum, I am wondering if her decreased vision in her right eye is because of the optic nerve compression prior to the surgery, or is because of the surgery itself.

It seems from reading posts about the experiences of others who have had OD surgery that decreased vision shouldn’t be a problem for too long after the surgery.

Does anybody have any experience with how long it takes for vision to go back to normal after OD surgery? Especially in cases of emergency OD surgery.

Thanks for all the help!

[Kimberly]

#1179437

Hello and welcome! Hopefully, you will get some responses here from those who have had an OD due to optic nerve compression. I’m not sure if the vision returns immediately, or if it takes some time.

In the meantime, can you go back to the surgeon to get some additional feedback? I can definitely understand your mom’s concern about having an operation on one eye while vision in her other eye is still blurred.

Wishing you and your mom all the best!

[Gabe]

#1179438

Howdy and welcome. Sorry to hear your mother has had such a struggle. Please make sure her doctor is also actively treating her GD properly. Saying her GD is ‘mild’ and putting her on thyroid hormones and not much else could mean that the underlying GD is adding to her TED issues. It might not be mild. What labs has she had done, have they repeated them, are they adjusting her anti-thyroid drugs (ATDs)? Is she experiencing other GD symptoms?

There is great access to research and personal experiences on this site and forum. I wish you and your mother the best,,

Karen

[daggerlee]

#1179439

Thanks Kimberly for the kind words! We’ve tried to contact the surgeon, but haven’t heard back, and this being Memorial Day Weekend and all…

Thanks Karen, she is on methimazole and propanolol. We’ve recently changed endos, her latest bloodwork came back pretty good, and obviously we’ll keep an eye on it

[snelsen]

#1179440

Hi, some brief thoughts for you from my EXTENSIVE experience with TED (thyroid eye disease>)
I do suggest you read this to your mom, or have her read it if she can see well enough. Also, you are welcome to PM me, I’ll provide my phone number so we can talk, as well.

My thoughts. And my experiences.

1. I am not clear how her GD is being treated properly right now. Did you mean that she is on thyroid HORMONES now, or do you mean she is on ATD, anti thyroid drugs? Generally, if we have Graves’ we have too much thyroid hormone circulating, and the initial treatment is not to give MORE hormone. But perhaps she has already had RAI or surgery? I agree with Karen’s comments. However, one comment regarding the relationship between Graves’ and TED. These autoimmune disease ARE related, in that most TED occurs with Graves’ folks. But the antibodies and whole process are entirely different. And so are the doctors. From your post, it appears that your mom is having her Graves’ managed by her endo, and her TEd managed by a good ophthalmologist, who has referred your to a good eye surgeon. All of that is good.

2. No, your mother should not expect excellent vision right after her OD. There is a lot of swelling, and if she is not being vigilant about keeping her head of bed at at least 45 degrees, and continues to use cold compresses, there will be even more swelling. You can read my posts on my OD experiences. The muscles have been moved, and it really does take about 2+ months post op to have your final result. This is frustrating, cause I was waiting to get a new prescription, for I do need glasses. And I need prisms ground in the lens to help my vision.
Mine was kind of fuzzy and blurry for around 3 weeks, but always getting better as the swelling dissipated and the muscles healed.

3. The result from the steroids is typically kind of miraculous, for there is so much improvement! But this wears off as the steroid is tapered. Optic neuropathy, as you know, is very serious. I also had emergency OD, for the same reasons, decreased vision, inability to see the red color, and all the rest of it.

The surgery will not “make her vision worse” because the alternative is to go blind with optic neuropathy. But when the muscles are pushed around, and fat and bone are removed, the eye and the brain need time to get used to their new normal. In my experience, I had terrible double vision, had the OD’s then followed by the strabismus surgery, which corrected and moved the insertion and origin of the affected eye muscles. That takes about 3 months to heal totally. But the result for me was instant and magical! I could see a single object again!!!!

Please write with more questions, or if I have not understood where your mom is in all of this. Hope my experience will help you.
Shirley

[daggerlee]

#1179441

Thanks Shirley! In response:

1. My mistake – I shouldn’t have said hormones in the first post. She’s being treated with methimazole and propanolol which I now understand are ATD or antithyroid drugs.

2. Thank you for this!

3. I will keep this in mind. We were considering in holding off the second surgery since her left eye is good at the moment, but our biggest concern is once the steroids wear off, whether or not her left eye will deteriorate again, threatening her vision.

I think we are leaning towards going ahead with the second surgery on Tuesday, since the first surgery went well and we are fearful of a relapse.

[snelsen]

#1179442

3. Your concern is valid re the steroids. They are a temporary “fix” to protect the optic nerve UNTIL an OD. Check this out with the appropriate docs when you can find them!

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