Re: Re: Orbital Radiation scheduled

[Guest guest]

In a message dated 6/19/2003 11:03:44 AM Central Daylight Time,

shen@... writes:

> 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.

>

Thanks . Hopefully it will work!!!

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]

In a message dated 6/19/2003 2:35:16 PM Central Daylight Time,

bzbee62@... writes:

> . I realize it is very scary, everything about graves is scary but it is

> terrifying when

> your vision is in jeopardy >>

No kidding. I don't mind seeing double vision on some things, but most

things I don't want to see once, much less twice-)

<< 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 >>

I'm not having trouble with colors, yet. But everything is sure blurry. I

used to be able to read signs 5 blocks away, and now I'm lucky if I can see my

front door.

<<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 !! >>

Yeah, that was weird. It was warm and pliable when they put it on me. Then

cooled off and molded quickly. Glad I don't have to wear it 30 minutes every

day!! And it's a good thing I'm not claustrophic. I'll have to ask them if I

can keep it. I can threaten the little girls I babysit at night when they

don't listen to me:-)

<<Do you have someone to drive you?>>

The mother of the 3 year old I babysit at night took me yesterday and has

offered to drive each day. I'll take her up on it sometimes, but not all the

time. I have to be there at 8:00 which means leaving here by 6:30. And that's

a

lot to ask of anyone.

<< How did they set up the > schedule I was curious as to if it could be

> spread out>>

No, it can't be spread out. So I am going two weeks straight with weekends

off. I just have to adjust my work schedule some to accommodate it. I'll take

Tuesdays and Wednesdays off instead of Sunday and Tuesdays. I'll go in later

instead of at 9:00. So I leave here at 6:30, there for the treatment by

8:00, back to Joplin to work by 10:30 to approximately 4:00. Then babysit in

the

evenings. The interesting day will be Friday when I work open to close

(approximately 11:00 at night), and the same thing on Saturday. It will be a

long

two weeks. But hopefully it will work. My understanding is that things won't

probably improve much for 6 months to a year, but the deterioration of the

muscles should be halted and no more damage done.

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]

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?

Re: Orbital Radiation scheduled

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]

Thanks Janice - I feel a little reassured. Do they give you anything to relax.

I feel as though I am going to the electric chair. Have you notice a change?

Are your eyes bad? My doctor said my situation is mild - but you know we are

our own worse enemy and I hate looking in the mirror. My right eye is worse

then the left, but fortunately my eye sight is good. My problem is I can't look

up or down or side to side without having distortion and double vision. My

right eye " stares " and their is alot of swelling around each. They are also so

red. How long has it been since you had it done and have you found relief and

improvements from the procedure? Thanks - Maggie

Re: Orbital Radiation scheduled

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?

>