[Anonymous]

#1166834

Hi Sam

I haven’t had the decompression myself, I had orbital irradiation to stabilize my eyes as vision was threatened. I’m sure you will hear from some who have had the surgery here, like Jake.

How long has she had the eye disease? Normally it is good to wait until the eyes are stabil, normally anywhere from 18 months to 3 yrs after the onset. Surgery too early can just lead to more later. My eyes have gone back into my head quite well on their own after 4 yrs (pretty stabile after about 2 yrs).

[Anonymous]

#1057748

Hi,I just found you all today. I am writing because my sweetheart
has graves and the thing she is dealling with now is deciding
whether to get orbital decompression. The surgeon told us the
risks and we got very scared. I thought it wasn’t worth the risk.
But she says she can’t stand looking like she looks. She is really
sad and upset and feels she is disfigured. For those of you who
have had the surgury ( or decided not to have it) any kind of info or
experiences you could share would be GREATLY appreciated. Also, does
anyone know if any other kind of treatment is being developed or
investigated. She wants the surgery for cosmetic reasons not because
her sight is threatened, so if something better is coming along she
can afford to wait for it. Thank You!

[Anonymous]

#1166835

Hi Sam! Only a small percentage of GD patients need this form of surgery. For me decompression was *the* answer. I had the RAI treatment three years before my eye surgeries, but the Graves’ Ophthalmopathy continued to get worse. My surgeries were done for health reasons – cosmetic benefits came along with the package. The operation itself was relatively painless – I spent the night in the hospital. Afterwards my sinus area and upper lip were numb for about a year total. The numbness gradually went away, and it wasn’t really a bother. So little to tolerate for the return of “normal” looking eyes.

After decompression I had extraocular muscle surgery to correct the slight double vision that resulted from the first surgery. Lid retraction was done next to help my eyes close at night and align the lids above the irises. It’s my understanding that these last two surgeries are not always necessary – each GD patient is different.

For more info about decompression check out:

http://www.mayo.edu/Mayo_Ophtho/Graves_info.html
http://www.bib.lu.se/elbibl/projekt7/THYROID.HTM#graves
http://www.cyberway.com.sg/~jackie

Feel free to email me if you have specific questions.

Take care and best of luck to your sweetheart! Debby

[Anonymous]

#1166836

Thanks so much for your replies! I feel encouraged by all of them.
I’m going to have Kim read them and I’m sure we’ll have some more
questions. What is the etiquette on this BB? Is it ok to ask about
a lot of medical details?

Thanks again for your timely responses,
Sam

[Anonymous]

#1166837

Whatis decompression surgery exactly?

[Author]

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