TED -- It seems Orbital Radiation is next:-(

June 9, 2003

In a message dated 6/9/2003 12:17:50 PM Central Daylight Time,

daisyelaine@... writes:

> If youd doctor is opposed to radiotherapy, other immunosuppressants can

> also

> be used. Colcichine is currently being studied, and pentoxyfylline has been

> shown to reduce soft-tissue inflammation, but not proptosis or

> ophthalmoplegia>>

Well, I saw the eye doc today. Inflammation and swelling are significantly

worse than a month ago, but I could have told him that since I couldn't drive

myself there safely. Overall vision has also worsened. I couldn't read nearly

the lines I read just a month ago. They didn't even bother with some of the

tests because my eyes were jumping every which way since I came off the

prednisone.

He is proposing Orbital radiation. He said he could send me to Saint Louis,

MO (a five-six hour trip) for a second opinion, but that the specialist there

who deals in orbital decompression surgery would most likely propose radiation

first.

He said there are risks, including damage to the optic nerve and some

permanent double vision, but that the risks were small and the success rate

high. I

go back next week for a consult with the eye doc who actually does the

treatment.

I must say it is very, very scary. I've tried looking up sites with more

information on the exact procedure itself and what I can expect but haven't

found

any yet.

Any input would be much appreciated.

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treated TED with

prednisone.

It worked while on prednisone, but TED came back worse after. Now considering

other options.

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