Has anyone had eye surgery for Thyroid eye disease from Graves? My eyes are still bulging after a year on meds and while my eye doctor says it's not that bad, I am tired of children trying to engage me in staring contests and looking surprised in every photo. I don't look like myself and want help. Can anyone provide input who has had eyelid surgery? Good or bad...I just want to learn more.
I have had two surgeries to correct problems from Graves Eye Disease. The first was just about a year ago, to remove part of the floor of both eye sockets and to correct lower eyelid retraction. I got about 4-5 mm reduction in the bulging look. The surgery was about 2 hours, and I spent the night in the hospital. It didn't hurt at all. My eyesight wasn't affected, there was some swelling and a little bit of trouble moving my eyes to drive for a couple of days. I was back to work well before a week was up.
The second surgery was 3 months ago, to correct the upper lid retraction and to remove some fat from the muscles behind my eyes. That took about an hour and a half, and other than feeling like a pin cushion for a couple of hours (either from the sutures or the local anesthesia, not sure which), it really didn't hurt either. There was lots of bruising and swelling, but my eyes never swelled shut. I will go back to the doctor in about 3 weeks to see how much more of the proptosis (bulging) was reduced.
These surgeries are often done in 3 parts - bony decompression, strabismus surgery if needed to correct double vision if necessary (I was lucky and had very few problems with double vision), then surgery to correct eyelid defects.
I didn't see a lot of difference in appearance or symptoms after the first surgery, but I have to say I am very pleased now. No more bulging eyes, staring contest, or looking permanently freaked out! No more eye drops constantly throughout the day. No more "forgetting" to take off my sunglasses in the store. I can't wait for the weather to warm up so I can see how great it will be to ride my bike without dry eyes!
I don't have a negative thing to say about my experience. The whole deal does require a great deal of patience (wait for the disease to stabilize, wait for the first surgery, wait for that to heal, have the second surgery, wait for the swelling to go down). I did encounter some sinus problems on one side caused by the surgery, but it was fixable by an ENT, and a VERY rare side effect. Had I known I'd have to go through the sinus stuff, I still would have had the eyes done. I just feel so much better about myself. People don't look at me and automatically assume I am mad or surprised.
Hope that helps you out. I realize there are probably folks out there who haven't had the positive experience I have had, so I hope I don't give you a false impression about the surgery in general.
I will be going in for the lid retraction surgery on 1/14/2009. I can definitely identify with the staring thing. I always feel like people think I am being rude, but I can't help it. I usually try to hide it by smiling REALLY big or wearing sunglasses. I have had graves since I was 13 and I am know 33. I have finally gotten the courage up take this step. I will let you know how it goes.
I have had alot of trouble finding info on this subject and people who have gone through this procedure. Because of HIPAA the doctors can't give you alot of info. My endrocronologist has recommended this surgeon and he is in a well recognized hospital.
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