[Anonymous]

#1021080

Hello everybody,

I had my first lid-lowering surgery in January. Looked great after a couple days. Then a month later, one eyelid started retracting again while the other one stayed in a normal position. The doctor thought the one retracting should be reoperated on so it would match the normal-looking one. So I went for it – seven months later they re-did the one eyelid. You wouldn’t believe what happened next! The day after the operation when I took the bandage off, the one they reoperated on was way too low, but more intetestingly, the former normal-looking one actually retracted way up into a stare again. The doctor explained that the brain actually controls the position of the eyelids, and when one is too low, the other one automatically tries to compensate by going up high.

Another thing that is puzzling to me is that I had been followed before the surgery for a year with the doctor monitoring my TSI levels and waiting until the antibody level was almost in the normal range or trending downwards (supposedly correlating with the end of the “hot phase”), and before this very last surgery, it actually was in the normal range; but the results of the surgery didn’t seem to have anything to do with the antibody level being in normal range or not. Oh well, I guess that’s the way it goes with Graves eye disease. I have learned to accept the fact that you never know what’s around the next corner with Graves.

The doctor said to just be patient at this point, which is easier said than done, as without my sunglasses, I truly look and feel like a freak and have become more withdrawn and discouraged. Will this ever end? Thanx for listening. If there is anyone out there with TED who has had a similar experience? Just want to know if there is light at the end of the tunnel.

[Anonymous]

#1079297

My ophthalmologist has scheduled a consultation with an occuplastic surgeon. He believes that my eyes are not in a hot phase and that lid surgery is recommended. I have considerable swelling above and below my eyes. He thinks the upper lid is starting to interfear with my vision. I am not sure if I will also need lid retraction once the weight of the lids has been removed. Any input would be greatly appreciated. Jeri

[Anonymous]

#1079298

I haven’t posted in several years, but am looking for some information on eyelid surgery. My eye specialist told me today he can help me with surgery, and am curious to hear what others who have had it done can share. I am quite active, a triathlete, and am training for an ironman distance race next Nov. My eye gives me trouble with watering all the time, chapping in the outside corner, and just in general being dry. My appearance has also changed due to the bulging eye/lid retraction. Any information would be appreciated!

Mary

[Anonymous]

#1079299

Thanks to those who replied to my post in January. I did have the eyelid retraction repair surgery done, and was pleased with the results. Not only do my eyes look more the same, the eye feels so much better!! I didn’t realize how much it was bothering me, feeling uncomfortable, pain behind the eye, dryness, leaking, etc. I would have it done again in a heartbeat. I was also impressed with how quickly it healed up, and I was able to resume my workout schedule. 5 days after surgery I did an all women’s ski race with my 6 year old daughter (although very slowly).

Mary

[Anonymous]

#1079300

Hello. I have a question about eye surgery. Last time I saw my doctor he sugested having a procedure I have not heard of and I am wondering if any of ya’ll have. He wants to basically close the outside corners of my eyes. He says the outside corners should be a v shape while mine are more like a c shape. Have any of you heard of this or had it done?
Thanks

[Anonymous]

#1079301

Hi millie39,

I don’t have experience with eye surgeries, but I do believe I’ve heard of this procedure. My recollection is that the idea is to keep more tears on the eye, but I could be WAY off ~ it could have to do with protecting the overall surface of the eye as well. I’m sure someone with more experience on this particular topic will chime in.

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1079302

Sure I had this done. It is called a tarosarophy. It is exactly what the doctor described. It allows the eyes to close better and prtects the cornea.

It did feel a bit strange to me at first and gave me a slightly asian look for a few weeks. Once the eyelids heal I looked pretty much normal and had GREAT relief for my eyes dryness.

Feel free to ask me any more questions.

Jake George
On-line Facilitator
Co-author “Graves’ Disease In Our Own Words”

[Author]

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