PHANTOM EYE SYNDROME IS REAL! - I Lost My Eye to Ocular Melanoma and Now See Visual Hallucinations
POST ENUCLEATION VISUAL DISTURBANCES HAUNT MY WORLD!
Also called Charles Bonnet Syndrome when the hallucinations are very specific and realistic, phantom eye syndrome affects about 50% of the people who get their eye removed, develop blindness and lose their vision due to an accident. Most see geometric kaleidoscope patterns that overlay their regular vision. They are often described as have a breathing or pulsing quality as if they are alive. They are always there and they are translucent and persistent. Some report the dissipate after a year or so, but some have had them for over 5 years.
On February 22nd 2022, I had my left eye surgically removed due to ocular melanoma, a rare eye cancer that affects about 2500 people a year in the USA. This video documents my recovery and healing after enucleation.
Because of the large size of the tumor (16mm wide by 7mm deep), the closeness to my center of vision and my retina detachment due to fluid leaking from the tumor, I was a poor candidate for brachytherapy ( radiation plaque). Radiation damage would had left me functionally blind in that eye along with probable cataracts and glaucoma.
Once I knew I was removing my eye (enucleation) I bought an eye patch to practice one-eyed living. I quickly discovered that I had full depth of perception with only one eye.
I bought a pair of swim goggles and blackened out the left frame. Then I waited for the sun to go down. I I caught my first wave easily and surfed like I had two eyes.
I knew then that everything was going to be fine. One eyed living would be grand.
But losing the eye is the easy part. The hard part is the lifelong risk of metaization in the liver and lungs. That's what makes this cancer so deadly. It likes to spread in the blood and is particularly fond of taking up residency in the liver.
There are no cures at the moment. So getting metastization is a game of whack-a mole where you keep treating the lesions while they keep trying to come back.
As of this date, July 4th, 2022 I am cancer free.
You can visit my Facebook page to follow my journey and see my awesome photos of sunsets, sunrises, moons and astral.
https://www.facebook.com/original.clay.butler/
For more information about ocular melanoma visit:
https://www.facebook.com/ACureInSight
https://acureinsight.org/
Prosthetic Eye by the Magic Hands of Steven Young
https://www.stevenryoungocularist.com/
My Ocular Oncologist who skilfully removed my eye
https://stanfordhealthcare.org..../doctors/m/prithvi-m
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