[gatorgirly]

#1058991

I developed moderate TED in July 2011. After a very high dose of steroids (tapered gradually), my eyes quickly returned to the “cold” phase. My neuro-ophthamologist in Florida sent all my records to my the oculofacial surgeon here in Massachusetts and basically told me I’d probably be a candidate by May because the pain and associated symptoms stopped as soon as I went on the prednisone, but the permanent damage has been done. I recently moved back to Massachusetts and people I worked with for years didn’t recognize me at first. I’ve gained weight that I can’t seem to lose and my eyes are so bulgy and asymmetrical that I really don’t look like myself anymore and it’s making my social life very challenging. Well, it’s almost May and I have my first appointment with the surgeon on Thursday.

For those of you who have undergone OD, what questions should I be asking? I can’t remember who recommended some of these, but at one point I stalked a bunch of posts about OD and have formed the following list:

1. Is my TED in the right stage for the surgery?
2. If so, will I need to go back on prednisone before or after surgery? I will do almost anything short of cutting off a limb to avoid steroids. In addition to the weight gain, it gave me really bad stretch marks on my “love handle” area and acne that I am still fighting. I never thought I’d be going through a stick of concealer every week at 27.
3. Is there one time of the year versus another to have the surgery?
4. How long is the recovery? How long must I stay home from work? I get two weeks of vacation time July 1, but that’s all I get until next July. I work at a small private college as their PR and marketing coordinator. I could do a lot from home, but 99% requires staring at a computer screen.
4. Can you do both eyes at once? What about my eyelids? I want to have as few surgeries as possible, even if that means a longer, more difficult recovery.
5. How long will I have stitches?
6. How long must I refrain from yoga and other exercise? This has become an incredibly important part of my life post-dx and without yoga, cardio and fresh air, I start to wilt.

Anything else I missed? Should I bring pictures of what my eyes looked like this time last year, before all this TED nonsense began?

*Edit: I should mention that I have no vision changes. I still wear my contacts (I only had to stop wearing them during the two weeks or so that I had symptoms). I have no double vision. I get occasional headaches from being in bright light for too long. My neuro-ophthamologist said that’s because more of my eye is exposed now that they are bulging. I don’t even need to get them dilated when I go to appointments anymore…which is good and bad.

[Bobbi]

#1171410

I cannot make any constructive comments, gatorgirly, but I am “replying” because I think your post needs to come back to the top of the list.

It does sound like you have a good list of questions to ask. And I do wish you very good luck.

[gatorgirly]

#1171411

Well, fortunately my own set of questions worked. And, I didn’t even need to ask most of them because this surgeon is – there’s no other way to describe him – cool. He does several hundred every year and understood exactly why I was there the minute he looked at me. He didn’t brush me off like most people and even most physicians. He realized my concerns were valid. After an extensive discussion about my history (and his second look at my medical records from my endocrinologist and neuro-opthamologist), he told me he wanted me to have one more MRI before he made a decision about the timing. He did said I definitely needed the OD and probably a lid retraction and maybe strabismus (even though I’ve never had double vision, it can happen after OD – I didn’t know that). He said I have excellent muscle strength and range in my eyes which makes side effects less likely.

I had an MRI with contrast in July when my symptoms were at their worst, and I’m having another one tonight. I have a visual field test (at which I’m becoming an expert) and then I see him in one month. As long as my MRI shows significant improvement since July – which I know it will because I went from 10 on a scale of pain and swelling to a 1 – we will begin the prep. I have to wait until at least July for my vacation time to kick in. There is a chance he will have me wait until October, which will be one year since I completed the long round of prednisone, to ensure the TED is inactive. Speaking of prednisone…

The best part? After asking how I handled prednisone, he promised I would not need to go back on it. He said the acne, weight gain and tachycardia outweigh the possible benefits of prednisone. Since I was on it for so long and only saw so much improvement, it was highly unlikely I’d see any additional improvement by going back on. Hallelujah!

I cried a little at the beginning of the appointment when he validated my concerns about aesthetics and how my eyes are the focal point of my face. I never cry, so it felt good to finally cry about something “as shallow as how I look.” He took some photos and asked me to bring pictures of myself before Graves and TED to my next appointment and promised to get me as close as possible to how I used to look.

We didn’t discuss the specifics of surgery. I chose not to, because I don’t want to get all prepared and emotionally ready, and then find out I need to wait a few more months. He will do both at the same time, and said he wait three months after OD before doing for the lid retraction…and strabismus if and when I need it.

He mentioned that I seemed extremely educated and had clearly done my homework about Graves, TED and OD. I didn’t mention this board, but it’s been a huge chunk of the educational portion, and the human element makes it that much more trustworthy. Thanks all! I will keep everyone updated on the surgery process.

[Kimberly]

#1171412

Hi gatorgirly – Great news that you had a positive experience with the surgeon. If you could PM me or send an e-mail to info@gdatf.org with his name, we sure would love to get him listed on the Foundation’s physician registry!

[Author]

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