[Caffer1962]

#1059741

Hi everyone,

I’m currently seeing an eye disease specialist for Grave’s eye disease. My left eye is much worse than my right eye, but so far there hasn’t been any pressure on the optic nerve and progression seems to be stable so we haven’t gone forward with IV steroids. My biggest complaint is the constant tearing and unstable vision (oh, and the way I look doesn’t help).

Once he believes I’m stable, he’s talking about surgery/surgeries to make room in the eye socket. Can anyone tell me what it’s like to go through these surgeries, how long the recovery time is and whether I will be completely asleep during the procedure? Also, I wear contacts (am still wearing them). Can I go back to contacts after these procedures? My vision is -13 so I am extremely nearsighted. My eyeglasses are very, very ugly.

In December, he performed surgery to lower my lid and I didn’t find out I had to be awake and I almost had a panic attack. At that point, my eye wasn’t bad at all and lid surgery was all that was needed. Shortly after that surgery my eyelid retracted even more and my eye bulged out an additional 3mm. I’d like to be more prepared this time.

[gatorgirly]

#1177198

My right eye was worse than my left, but your symptoms sound a lot like mine did. The pain and pressure ceased shortly after starting a large dose of prednisone (50mg tapered over the course of several months), but the tearing was quite annoying.

First of all, what kind of specialist are you seeing? You mention he operated on your eyelids so I’m assuming he is an oculofacial surgeon? Typically we see a neuro-ophthalmologist or at least an ophthalmologist experienced with thyroid eye disease (TED) as opposed to an optometrist or an optician. An oculofacial surgeon who does TED surgeries is also a great resource. I lived in FL during my TED onset and had a great neuro-ophthalmologist but when I moved back to MA, there weren’t any around so my oculofacial surgeon took over, doing all the same tests to ensure my eyes were stable and in the cold phase for a full year before operating.

I had my bilateral orbital decompression in September 2012. I blogged about it and would be happy to share the link with you – just PM me. It was major surgery so I was completely asleep under general anesthesia. I actually had two surgeons – my oculofacial and an ENT surgeon, who did a portion of the surgery endonasally. It took about 3-4 hours and since it was an afternoon surgery, I had been fasting for about 14 hours beforehand and ended up quite sick when I woke up because no one in my family tolerates anesthesia well. But my pain was minimal and I slept for about 48 hours except to use the bathroom and attempt to eat (which didn’t go so well those first 48 hours). I used percocet around the clock as the pain became quite significant, but my surgery ended up being much more involved than planned, so my pain was more severe than most. I think Shirley (snelsen on here) said she didn’t even need painkillers. After a few days I was up and about, but slow. By Day 7 I felt human again but still slept about 16 hours a day, mostly because my eyes tired so quickly and easily. I went back to working part time (half-days) by Day 14. On Day 21, I went back to working full time, doing yoga, and exercising. I felt 100% minus the facial numbness on my right cheek which still persists to this day. I was told this could last 6-12 months.

I have worn contacts for three years, and only had to stop wearing them for the initial 4-6 weeks (I don’t remember the exact duration) of my TED onset because my eyes were so swollen and inflamed, and then for three weeks after my OD while my eyes healed. I felt ready to wear them at the 2-week mark but my surgeon wanted me to wait one more week. I also hate my glasses and how I look in them, so I was eager to get back into my contacts. After the surgery, I switched to daily contacts to reduce the likelihood of any future issues with my eyes or vision.

I’m a little confused as to why you had the eyelid surgery first. The normal progression of surgeries after the hot phase of TED is: 1. orbital decompression 2. strabismus surgery to correct double vision (if needed – I do not need this one since I don’t have double vision) and 3. eyelid surgery to lower upper lids.

Sorry I wrote a novel. My blog has more detail of the entire post-surgical process and is a little more organized.

[Caffer1962]

#1177199

Don’t worry about writing a novel–I feel so ignorant about what’s going on with me. The reason I had the eyelid surgery first is because the doctor believed I had stabilized, and since my swelling was so minor, we felt that dropping the eyelid was the only surgery I needed. But about a month after the surgery the eyelid was retracted farther back than ever and my eye was out another 3mm. So I went from cold to hot. No way to know if the surgery caused it to flare up.

Thank you so much for telling your story. I look forward to reading your blog.

[Author]

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