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PHANTOM EYE SYNDROME IS REAL! - I Lost My Eye to Ocular Melanoma and Now See Visual Hallucinations
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- čas přidán 19. 08. 2024
- 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.
/ original.clay.butler
For more information about ocular melanoma visit:
/ acureinsight
acureinsight.org/
Prosthetic Eye by the Magic Hands of Steven Young
www.stevenryou...
My Ocular Oncologist who skilfully removed my eye
stanfordhealth...
Your prosthetic eye looks fantastic. As I was looking at you I couldn’t tell which eye it was honestly.
Very interesting. Whoever made the prosthetic eye did an incredible job. I also couldn't tell which eye it was. 👍🏻
Thanks for these videos, Clay. You are an inspiration!
You're welcome. I have many more on the way. I'm going to make this cancer famous!
Thank you Clay. Important info. Has me thinking...
Fortunately, mine has started to fade over the last couple of months. It's much less noticeable now and more transient. But people that just go blind, but still have their eye, will also report seeing it sometimes.
谢谢克莱。继续，伙计！
Thanks man!
What an informative and insightful video! Thank you Clay. Carry on, mate!
Thanks!
Thank you, Clay. Very informative. I am glad to see how you reinsert your prosthesis.
Thanks! I'm getting faster every day.
Thank you Clay for sharing your syntoms... It's very informative for my research for a comic project I'm working!
Very informative. Thankyou for this Clay
I am extremely grateful for this video and the learning
There is much much more to the whole experience than the operation itself
The aftermath is even more intensive - if that could be possible !!
It’s wonderful that there is such good connection with others who can empathise so well.
I've asked my doctor if I can write a document to give out to his patients. My packet had three pages about brachytherapy and like three sentences for enucleation. Getting your eye removed gets no love. Almost everything is about radiation.
@@claybutler what a fantastic idea
The whole process seems greatly lacking
Please let us know if you manage to get a document passed for those who should benefit, friends and family notwithstanding
I had plaque 9/2018, have lost almost all vision in my OM eye and still have the hallucinations you discuss! Thank you for this info!
Wow, that's a long time! Have they subsided at all or the same?
@@claybutler they have decreased some. Most of the time I can ignore it, but seems a little worse when I am tired.
@@janetarcher8229 Me too. End of day, and if allergies are bad, it's definitely worse.
It is such a relief to know that it is real! Trying to explain this to someone who has not experienced it, including doctors, is frustrating. Thank you!
Thanks for your video, encourage me to have it remove
Thank you Clay for your informative and inspiring video. I'm sorry that some doctors don't believe you - that seems absurd to me. But it's good news that you are cancer-free. I've read about mirror box therapy for phantom limbs; I don't suppose there is a similar treatment for phantom eye syndrome?
I've thought about that box mirror therapy as well, but unfortunately you can't look at your own eye like you can with a limb. It also may be counter productive, if it was possible, because I want my visual cortex to stop trying to "see" with my enucleated eye.
@@claybutler Yes, I understand. Thank you for your reply and I wish you all the very best.
Could they have done something to the nerve on that eye when they enucleated it to prevent this ahead of time without affecting your remaining eye? Fascinating stuff!
I don't think so, because the nerve has to be severed cleanly and you can't sever it without doing the enucleation surgery. It's the last step after detaching the rectus muscles.They severed mine by making a little noose with suture.
@@claybutler So the optic nerve is severed, but you still "see" something like an image? Bizarre!
@@annemurphy2046 Yep. Sometimes it feels like my missing left eye is "stuffed" with this hallucination. Like it fills my entire left eye field of vision. Somedays it feels like I do have two functioning eyes, but one of them is seeing a hallucination.
RIP Clay, we love ya ❤
Can you even imagine how much you’ve learned these past few months??
I feel like I'm getting my masters degree in six months!
It’s been a year since plaque therapy. I had 6 days in. I called them my floaters but they’re slowly going away too. I used to think they were bugs flying.
Glad they are fading. That's good news!
your story is exactly what happened to me right after enucleation, nov.2019. Still have the same geometrical patterns, rhune characters I call them, 24/7, they are soapy jelly transparent and moving. Especially in dusky rooms it troubles my vision. Doctors in Holland have no answer.
I feel your pain! They are quite annoying sometimes. I refer to is as cranky eye. Bad allergies making my socket burn and itch, long day in front of the computer, non-stop hallucinating... I can get a little pissy at the end of the day.
Me too. I got my right eye removed on october this year. I most often see them during complete darkness when im going to bed.
🙌🏻
Hi Clay, great video. I wanted to ask you about your overall experience with prosthetic eye, does it creates a feeling of foreign body inserted in the eye socket or creates discomfort? The reason why I am asking, because of my old eye trauma which developed secondary painful glaucoma along with photophobia , I am considering to go with prosthetic eye. Don’t know many people to ask about their experience and life quality afterwards. Thanks!
The way I describe having my prosthetic in is that it's like having a big wallet in your pocket. It doesn't hurt to have a wallet in your pocket, but you always know it's there. That's kind of like it that a when wearing a prosthetic versus my conformer.
My conformer is so thin, small and lightweight, that it feels like nothing. It's extremely close to having a completely bare socket. So I actually wear my conformer far more than my prosthetic.
A big part of that is because I surf every morning and I don't want to lose my prosthetic in the ocean. So if I have my prosthetic in during the day, I'm going to take it out in the evening and swap it with the conformer.
I'll go to bed and sleep that way and then get up in the morning to go surf. Then I'm going to come home and eat and have some coffee. And if I don't have any particular reason to put on my prosthetic, I just don't put it in.
But even if I'm not going to leave the house to do errands or some kind of event, I'll make sure I put in the prosthetic at least every third day for 5 to 6 hours at least, just to keep the socket trained to accommodate a prosthetic.
Something I do notice with my prosthetic is that I can feel my tear glands working.
Your tear glands are above your eye and out towards the side of your head. When I'm wearing my prosthetic, about every half hour I can feel the cool liquid buildup above my prosthetic, and then it washes across like a waterfall. It's kind of like a sprinkler system on a timer.
But my prosthetic never hurts, but it definitely feels bulky compared to my conformer.
And if I'm really busy and doing stuff, I quickly forget I have my prosthetic in.
Mine would have cost me $4,000 if I had to pay for it myself. So if it wasn't for insurance I definitely wouldn't have gotten one because it's not solving an emotional need for me. It's just kind of a fun thing to have and I'll put it in mostly when I'm going out to run errands, visit friends and family, go to a show or concert and so on.
I'm really comfortable with both versions of myself. When I look at myself and I see the socket it looks totally normal. And when I put in my prosthetic it also looks totally normal. Two versions of myself.
@@claybutler really appreciate for your detailed answer, it gives me more confidence to a get prosthetic eye and live full healthy life again. Thank you!
Hi m8 I disagree I think you should have tried the treatment my tummor was 17mm and over 10 mm thick mine was in the macula at back I had a painless treatment beam radiation I still have my eye my retina was crushed by growth I do not get glucoma 5 years after treatment I think you should have at least tryed thankyou I've seen you on Facebook on ok site
You can't really disagree with my decision. It's personal. My vision was already unacceptable before enucleation and it would never get better. So I had to wear an eyepatch just to feel confident. Who wants to wear an eyepatch forever? Not me
And there's 5% chance the tumor will grow back if you treat it with radiation.
And I got liver mets only nine months after diagnosis. So, I've had liver cancer since September 2022. I'm so glad iI didn't waste those precious months babysitting a diseased, functionally useless eye.
The number of people who did radiation on large tumors, only to have it enucleated later is quite substantial die to pain or regrowth is quite substantial.
@@claybutler I did not know you had Mets that's says it all right there fair enough you are right Godbless