Stories

Twice Blessed? Two Rare Diseases in One Lifetime?

April 4, 2016

When I was two years old, I was diagnosed with Coats Disease, which resulted in the removal of my left eye. When I was 40, I went in to see if the look of the previous eye surgery could be improved. I guess I finally got the courage to look for something better. The jury was out, one ophthalmologist diagnosed it as an opportunity for a coral type implant, the other saw no hope for eye muscles to exist at that point.

A CT scan revealed that there were no eye muscles to work with, but also that there was a Colloid cyst of third ventricle present. I was left by the ophthalmologist to find my own neurosurgeon.

I was lucky, and found Dr. Maxwell at the U of M Fairview Hospital for a consultation. He insisted that he operate immediately. He performed a craniotomy to remove the cyst. That was 16 years ago. I keep wondering if there are more strange problems waiting in my future, or if I am past this. What are the odds that a person would have these two rare diseases in one lifetime?

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