Linda's Story - Graves Disease

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Linda's Story

My Journey with Graves and TED (Thyroid eye Disease) Started in August of 2000. I started having "scratchy" eyes I thought it was allergies at that time, slowly over the next few months changes in the appearance of my eyes started to happen,they started to look "buggy" and they was sensitive to light.

I did not know what was wrong with me there was so many changes going on that I was afraid, I was falling up stairs and could not remeber things but still I did not seek medical attention until December of that year when my eyes got so bad I had to do something about them.

It was at my eye appointment I heard the words Graves disease, I was sent to my physician and had an uptake test and then had RAI within a week of first seeing my eye Dr.

Being uneducated about the disease I did not know that there was other treatments for Graves and that RAI was probably the worst choice I could have made with active TED.

My eyes continued to bother me and I was put on a low dose of prednisone 6 months after RAI, over the next year I continued to go through several rounds of prednisone but each time I came off of it my eyes would go right back to where they was before.

By June of 2002 I developed double vision and my eyes looked terrible,this time I was put on a high dose of prednisone. In November I started to lose my eyesight for short periods and then In December I lost my eyesight one night when I woke up it was like some one had slowly pulled a curtain over my eyes, everything went black and this lasted for a little over an hour then it was like some one had lifted that curtain just as slowly and I could see again MRI's showed major swelling but no optic nerve compression.

I was referred to The University of Iowa and by the time I had my appointment my eyes measured 32 and 30 cm. 2 days after my first appointment I had decompression surgery to both eyes due to my optic nerve being compressed .

6 months after decompression surgery I had 20 radiation treatments to help with the swelling . 2 weeks after the treatments was done, my double vision went away In November of 04 I had lid retraction surgery and extra skin removed on both eyes. I have had a total of 3 lid surgeries to the right eye,to help with the droopiness, now there is only a slight difference between the 2 eyes and I will not have any more surgeries even though I have been told that one more surgery should align them.

My eyes now measure 17 cm each that is a reduction of 15 cm since my first surgery. I have 4 screws in each eye socket due to the amount of bone that was taken away.The decompression surgery left my right side of my face numb and still after 5 years part of my nose and cheek are still numb.... but this is a small price to pay.

I am one of the lucky ones my eyes look normal and people that I have met in the last few years would never know what I have been through with TED.

I wish you all good luck with the journey that is ahead of you.

Linda (aka Loulin)

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