[rowzzr]

#1058768

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[Kimberly]

#1169870

Hello – If you do a search on this board for "eye surgery", "orbital decompression", "blepharoplasty", etc., you can see that there are a LOT of people here who understand what you are going through.

In fact, the Shiley Eye Center did research on Thyroid Eye Disease and discovered that TED creates a similar emotional burden to a cancer diagnosis. And the irony is that it was actually *appearance* issues and not problems with vision that caused the most distress.

With that said, Decompression surgery is generally done if there is optic nerve compression or if the eye is protruding so badly that the lid won’t close all the way.

There is another option for surgery called blepharoplasty that can deal with the swelling issues and help with eyelid retraction, if you are dealing with that. If you have lid retraction that is keeping your eyes from closing, the surgery is medically necessary, not cosmetic.

Even if you don’t have a medical necessity for any eye surgery, the confidence issue is clearly affecting your life. You will need to carefully weigh the risks/benefits and costs of having a surgical procedure done. A good web site for referrals where you might get a second opinion is http://www.asoprs.org, which is an association for ophthalmic/plastic surgeons.

Wishing you all the best!

[snelsen]

#1169872

Hi, I am so glad that you wrote. I applaud you in moving forward to explore all options as you make your decisions. The doc you want to see are oculofacial surgeons. They are eye surgeons,with extra years of training in facial surgery. YOu got some good suggestions from Kimberly about how to find these docs. In addition, I suggest you say where you live in a future post. We do not recommend docs on this website, but you could ask for a PM (private message) from readers who may have good suggestions of docs to see.

Kimberly mentioned a lid surgery-called blepharoplasty. I am not sure if you have eyelids that are retracted
(lower ones abnormally low, upper ones abnormally high) but if you do, that procedure should be done before and OD (orbital decompression.) I think I understand that your eyes bulge out, or are more prominent, that you like? That is very typical of TED (thyroid eye disease.) Do you eyes feel dry? I suggest that there is some possibility for you to explore having the procedures you want to get the result you want, coded by the docs as a medical condition. That would be nice if you could do that. Cosmetic surgery is expensive when paying out of pocket. But many people certainly do have elective procedures.

Clearly, this is impacting your life in a negative way, and you want to do something about it! And you CAN!! I can’t imagine what your eyes look like, since you say you don’t have proptosis. I thought I understood that was your concern, bulging eyes.
BUT whatever your concern is, you have a right to have it, and a right to do something about it.

I am sorry your family does not quite understand all this, but the bottom line is that they really don’t need to, and maybe they really do think you look just fine.

I wish you the best of luck. These surgeries are not small surgeries, and you need to have realistic expectations of what
the outcomes will be. THere are lots of references of before and after photos. Be careful on the web, there is a lot of junk out there, and it won’t be helpful to you, I don’t think.
Do write again
Shirley

[snelsen]

#1169874

Your eyes being dry is common. With tED, the tears change consistency, and are not as effective in lubricating our eyes. so we need eye drops, gel and lubricant. I have to use all three of them eveyr night. In addition when more of the cornea, ie more of your eye is exposed, there is more surface to dry out, and the eyelids sometimes drift open while we sleep. It will be helpful for you to keep these things by your bed. Dry eyes can be serious, for if the cornea gets too dry, a corneal abrasion could result. I do everything possible to keep them moist. My eyes are very dry. Some doc have put in little plugs in the tear ducts to help the dry eye situation, but it did not help me at all.

To have an OD, you need to be seeing an oculo facial surgeon. That’s who is trained to do them. YOu may need a referral from another doc tomake an at with these docs. You may not. Be sure to mention thyroid eye disease when you call. They will need as much info as you can provide about the course of the disease. But what will matter now, is the present. The only caveat for doing and OD is that you should not be in the active phase of the disease, for your eyes are still changing a lot at that time. Try to do some reading about TED and its’ progression, either on the search engine the references on the first page if this site.

If you think you eyes are bulgy, that is what matters. Your doctors won’t be interested in what your family thinks. Also, the eyes can be measured by the docs on how much they protrude. They need these measurements for the OD.
shirley

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