[TerriL]

#1060710

Hi all, I’m new to the forum and looking for advice.

I am not new to thyroid, autoimmune, hypo, or hashimoto’s but I are new to Graves. My sister has Thyroid eye disease and her Ophthalmologist says she has the largest eye muscles he’s ever seen. (one eye)

She’s tried oral steroids, ENT has removed all the fatty tissue he could, Large doses of IV steroids but she does not seem to be responding to any of the treatments thus far.

They are now talking about Orbital Decompression. The method they are considering is removing the front top half of her skull (forehead) to access the orbital bones. There they would remove/scrape bone to make room for the enlarged eye muscles.

I’ve been reading up on OD but have yet to come across this method. Looking for any information/advice I can find.

Thanking you all in advance!

[Kimberly]

#1184268

Hello – We are fellow patients here, not docs, but I have never heard of this approach to orbital decompression, either. If I was in your sister’s position, I would definitely seek a second (or third or fourth) opinion. This is a good site for finding a surgeon near you:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.asoprs.org/custom/directory/?pageid=3657&showTitle=1

Take care – and thanks for being a great advocate for your sister!

[Liz1967]

#1184269

I have never heard of that approach. Are you sure that is what they said? Usually, one or two of three orbital walls are decompressed (bone removed). The medial wall is the wall close to the nose, the inferior wall is below the eye and the lateral wall is the outside corner farthest from the nose. The medial and inferior walls can be accessed either through the nose and sinuses, usually done by an ENT, or through an incision in the corner of the eye by the nose by an ophthalmic plastic surgeon. The lateral wall, which is what I had done, is accessed through an incision in the outside half of the upper lid and is also done by an ophthalmolgist. Orbital fat can also be removed to decrease inflammation and make more room. No one has ever mentioned superior wall except once in passing that it is never done. Find an ophthalmic plastic surgeon familiar with Graves. Orbital radiation is another option to explore for optic nerve compression. I had steroids, orbital radiation and orbital decompression. The most important thing you can do is find a center or university or individual ophthalmologist with a lot of experience with Graves eye disease.

[snelsen]

#1184270

Agree with Liz and Kimberly. This sounds very concerning to me. The fact that you do not find in credible literature,or find it at ALL, should tell you to explore further.

Liz explained this very well, and this is similar to the kind od explanation and plan you should be hearing from an ophthalmic plastic surgeon and ENT doc.
I had both in the OR for my OD. These procedures MUST be done by docs wh do many of them.

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