[Anonymous July 24, 1997 at 6:49 pm Post count: 93172]

#1054611

Hi Joanne, I agree with you. Radiation does not work quickly for everyone.

When my eyes were first diagnosed as Graves Eye Disease my Endo and Ophthalmologist decided to try three pulses of methylprednisolone therapy intravenously. Monday, Wednesday and Friday I went into the hospital for treatments. I hated every minute as I am terrified of needles. The nurses had to cover my arm with a towel as I couldn’t look at the needle in my arm for the two hours the drip took. This procedure did not work for me. From this my Doctors knew that large doses of steroids would not help me. It was then they set up for orbital radiotherapy. I finished my ten treatments about four months ago. From my last appointment my Ophthalmologist felt I was stabilizing after the radiotherapy and will benefit from decompression by muscle surgery and lid surgery. He likes to wait six months before doing any surgery to ensure things have stabilized. However, during these past four months I have suffered constant tearing, sharp pains in my right eye, double vision and my eyes are extremely sensitive to the light.

My next appointment is 12 August unless I notice a change for the worse in which case I am to go in sooner. I know the radiation treatments have stabilized the disease and hopefully in October I can start with my surgeries. I still have my double vision badly, I can’t work at my job in an administration capacity and it looks like it will be a long while before my eyes are back to “normal”.

I am really happy for those that receive quick results from radiation treatments but unfortunately that is not the case for everybody.

Hope everybody has a good day – it’s still before noon here! SAS

[Anonymous September 8, 1997 at 8:00 pm Post count: 93172]

#1159074

Did you have the treatments in the early stages? what happened after the 2nd treatment? Are you stable yet? Thanks…gwen

[Anonymous September 9, 1997 at 12:32 pm Post count: 93172]

#1159075

Gwen, no they didn’t give me the first radiation treatments until it was pretty clear that things were going downhill very quickly. I was taking prednisone (80 mg) and using drops and steroid cream, but the vision kept going dimmer and dimmer. Absolutely no improvement after the first treatments. The treatments ended the first week in June (’94) and I had decompression surgery in August. Then things really went wacko; they pulsed my prednisone, 60 one day, 80 the next, etc. When it appeared nothing would save my vision, the optho said radiation again was the only thing he could even think of to try. So we did it again and I still didn’t get better. It was a nightmare. One doctor even talked to me about learning to live without sight. The whole episode made me realize how vunerable we are to every fad or “new” idea that comes down the pike. If the doctor had said stand on your head three times a day, I would have done it, hoping, just in case it worked. My eyes finally settled down in the fall of ’96.

[Anonymous July 23, 1999 at 11:52 am Post count: 93172]

#1159076

Hi Susan, I was on steroids about 2 months before radiation, then of course they wean you off it slowly afterwards so it was probably 4-5 months total until I was all the way off it. If I had to do it over, I’d limit the time I agreed to be on it. My side effects weren’t nice. But not everyone is affected like I was.

They didn’t advise me of any additional risks because of the optic nerve damage. They aim the radiation away from the optic nerve and block the radiation from your eyes and optic nerve by using metal plates.

Hope this helps…

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