[Bluestemrose]

#1059731

Hello: I am new to this forum and glad to find it. I am one week post a bilateral orbitl decompression surgery completed at The Mayo Clinic. I have spent the last 9 months on high doses of prednisone (60 mg.) which have then given me Cushings Syndrome on top of the TED. I had horrible side effects from the prednisone, and docs at Mayo (3 of them)concluded that the condition of my eyes and the rest of my body prompted surgery. The swelling in my eyes has gone down tremendously. I have had several family and friends comment that my eyes look better than they’ve looked in over 2 – 3 years. I am currently experiencing ‘kind of’ double vision. I can drive, watch tv, read, but, eveverything is fuzzy. I’m a little freaked about returning to work next week. I’d love to hear from others who have had this surgery….. can double vision go away? The surgeon said it certainly could but I could also require surgery on the eye muscles down the road. It was quite an ordeal traveling out of state for the surgery, etc. So, the prospect of more surgery kind of scares me. I was diagnosed with Graves Disease in 2000, had the radioactve iodine treatment then this eye business really went to town about a year ago. The endocrinologist I went to just nailed me with prednisone, and the side effects were life threatening (like bp in the 200/115 range). Docs at Mayo said I HAD to get off this high dose and have titrated it down slowly. I feel so much better in tht department. Anyway….. any advice, encouragement, etc. is greately appreciated. I do not feel like the opthamologist I have access to in my communty knows what the hell he is doing. At Mayo, they really dd. I may just have to establish a ‘Mayo Fund” for myself and use their services. Ugh. Anywy, I am very very grateful for this surgery. I really felt like my eyesight and life were in danger! I’ve never been so sick and depressed in my life (and tis coming from a two-time cancer survivor!) Nice to meet everyone. God Bless.

[Kimberly]

#1177135

Hello and welcome! That’s great to hear you are already noticing such a dramatic improvement in your eyes! Double vision is sometimes a complication of OD surgery, but it’s difficult to predict whether or not this will be a lasting issue.

Hopefully, you will see things stabilize, but if you do a search on this board for “strabismus”, you can read more from others who have had surgery for double vision. Most of the members of this board who have had that surgery have been pleased with the results. In the meantime, temporary fixes include using an eye patch over one eye (just be sure to rotate – and be super careful when driving!) or using prisms that can either be stuck on to glasses or ground into an eyeglass prescription. Sometimes, for people with mild double vision, they can get single vision by looking at things from an angle, so that might be worth trying out.

You might also be interested in the videos that the GDATF has posted on YouTube – there are quite a few on thyroid eye disease:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.youtube.com/user/gravesandthyroid

Take care – and please keep us posted!

[gatorgirly]

#1177136

I had bilateral orbital decompression in September 2012, so I am about five months post-op now. I also was on high doses of prednisone before the surgery, and I hated that drug more than anything.

I was fortunate in that I never had double vision before or after the surgery. Did you have it beforehand, or was it a side effect from the surgery? My vision was never blurry except for maybe those first 48 hours when one eye was patched and the other had all sorts of ointment in it.

You’ve taken the first big step, but it’s a long, slow process recovering from Graves’ and thyroid eye disease (TED). I still need to have my eyelids lowered but that’s still a few months away (only because we can’t get my thyroid levels stable – but that’s nothing new), otherwise I receive lots of compliments that I look like my “old self,” meaning my pre-TED eyes. My only complication from the surgery was temporary numbness on the right side of my face. My surgeon expects it to last 6-12 months, so another 1-7 months. It’s annoying, but most days I hardly notice…except when I have food in my face or teeth that I can’t feel and someone tells me or I catch it in the mirror!

Anyway, I hope you can find a better ophthalmologist or find the resources to get back to the Mayo Clinic to receive adequate care. An ophthalmologist wwho doesn’t have extensive training and experience with TED is about as useful with our eyes as a gynecologist would be.

[Griselda]

#1177137

Hi everyone

I diagnosed with graves disease after I taked the RADIOACTIVE IODINE, this is been dificult for me, my eyes are swelling now and its very unconfortable , my oftalmologyst told me that I need the decompression surgery but Im so scare to do it , I don have blurry or double vision and Im not sure if im going to do the surgery I really need help I just wanna make sure that it is time for the surgery or not , i will really appreciate your response.

God bless you !!!

[Kimberly]

#1177138

@Griselda – Hello and welcome! The important thing in making a decision on orbital decompression surgery is to make sure your eye disease is in the “stable” phase, meaning that your eye condition is stable and symptoms have not been getting either better *or* worse. The reason for this is that doctors don’t want to do one surgery — and then have your eyes change again. Hopefully, others here will chime in with their experiences, but many docs like to see a stable period of six months.

All surgeries do come with risks, which you will want to discuss with your surgeon. However, if your bulging is severe enough that your eyelids aren’t closing all the way (particularly at night), this can cause damage to your cornea – so this is definitely something to consider.

This is a nice resource page from UM Kellogg Eye Center on the course of thyroid eye disease:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.kellogg.umich.edu/thyroid/faq.html

Hope that this helps…wishing you all the best on this next phase of your journey!

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