Orbital Radiation scheduled

[Guest guest]

Saw the radiation oncologist today. He did new CT scans, had the report from

the eye doc, and said I no longer have the option of waiting for this to

resolve. This is the second time around, the first 20+ years ago resolved

itself

after treatment with steroids. This time it has lasted 11 months with a

steady decline, to the point where I have double vision all the time, my eyes

visibly go different directions, the headaches are worse. He said the optic

nerve

is becoming " stretched " from all the swelling and if I don't do something, I

am in danger of losing my vision. Then the only option, he said, would be

orbital decompression surgery which may or may not restore my vision. So he did

the mask and marked the areas to be treated and I'm scheduled to begin them a

week from today. A whole week to think about it!!!

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. Optic nerve now

being threatened and starting Orbital radiation June 24, 2003

[Guest guest]

Hi Terry,

Glad you got your orbital radiotherapy scheduled. When the optic nerve is

threatened, you don't have much choice. It's good you have a week to get caught

up on things. The ophthalmologists I interviewed say it's not uncommon for GO

to develop 20+ years after RAI. I hope I'm spared. Best to you, Elaine

[Guest guest]

I'm very sorry to hear your news. I hope that the procedure gives you

relief, sounds like it's been a very tough road. I'll be thinking of

you all week.

> Saw the radiation oncologist today. He did new CT scans, had the

report from

> the eye doc, and said I no longer have the option of waiting for

this to

> resolve.

[Guest guest]

Terri,

I wish you luck !!! Like I said before I believe that it has

helped with the pressure and my appearance. I realize it is very

scary, everything about graves is scary but it is terrifying when

your vision is in jeopardy Before I said I hadn't noticed a change

in my vision but I have I still see two but everything is clearer

and I can tell the difference between red and black again YEAH! so

what do you think about the mask They let you keep it at the end

told me I could serve chips in it or something I told them I was

going to be Hannibal Lector for Halloween I always joked with them

every time they strapped me down that I promised that I wouldn't

bite !! Do you have someone to drive you? How did they set up the

schedule I was curious as to if it could be spread out My prayers

are with you Janice

[Guest guest]

In a message dated 6/19/2003 12:03:19 PM Central Daylight Time,

daisyelaine@... writes:

> . The ophthalmologists I interviewed say it's not uncommon for GO

> to develop 20+ years after RAI. I hope I'm spared

What's kind of weird with me I'm told is I had GO three years after Graves,

then remission, then GO even worse than before 20+ years later again. I hope

you are spared also Elaine. How long go did you have Graves? What treatment

did you have for it?

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.

[Guest guest]

Hi Maggie,

You don't have to worry about moving during the procedure they

will strap you down very tight I had the mesh marks on my face after

each treatment I didn't see much of a change until about two weeks

after I had stopped the treatments although they told me some people

see results after a week It is very scary I will pray for you Janice

> Janice et al:

>

> I too am scheduled to have radiation therapy starting Monday - had

my hanibal lector mask prepared today. I am so scared. I had a

dream I moved during the radiation and woke up in a sweat.

>

> How long did it take before you saw a change?

>