Lost my vision in my left eye when I was 18 due to congenital glaucoma. Increased pressures have made it very painful and I just can't deal with it anymore. It's bad decoration at this point :D Probably JUST before covid I started losing color in my eye and now it's blue. In the process of scheduling my surgery for evisceration. Thanks for sharing this video. I've been kinda gearing myself up for this moment for a VERY long time and it's just good to see people sharing their experiences.
I just had the enucleation surgery for my left eye a month ago. Thank you for this video, I truly enjoyed your humor through it! Humor is definitely how I’m trying to get through this too. Have a rad day!❤
Hi Clay. I just had my left eyeball removed Nov. 27th 2023. Waiting on my prosthetic (should be early February). Learning to live life with the conformer and everything else that comes along with having 1 eye has been much tougher than I anticipated. I love your videos, your positivity and all your knowledge. My conformer fell out and all other videos had me in a panic, but watching yours I was able to place it back in. Thank you!❤
Hi, thank you for this video as I'm due to have my left eye removed for the same reason as you. I'm not bothered about having a prosthetic but I will like you use the conformer mostly.
Thank you for sharing your experience and talking about the conformer. I checked you out on CZcams when I googled "conformer" as I was typing a medical letter and I didn't know what it was.
I had the same thing in my left eye to I had melanoma in the eye and I still go to my doctors the first spots and come back and my liver and I bump into stuff everything that sucks
I didn’t know there is such thing as a conformer until I found your video. My son is considering to get his left eye ball removed. The accident caused his left eye to rupture and his facial skull and teeth fractured quite badly. He has metal implants to keep his face in its shape. Like I mentioned I didn’t know that there is such thing as conformer while my son is deciding whether to let it be or have his eyeball removed. The hospital eye specialist never mentioned anything about having prosthetic eye after we decide for it to be removed. After watching your video, I find is good to have this conformer to maintain its shape. My question is > is it too late for my son to consider having this conformer and prosthetic eye now? The only difference is, he has lost the sensory to his left eye area. It wont blink. He currently puts on the eye patch when he goes out. Its been 2 years now and I do see the shape of his left eye side shrinks. Smaller than the other eye.
I would ask for a conformer. I really like mine. Definitely helps maintain the mileage shape. They have different models with different thicknesses. For me it feels weird not to have my conformer in. Because once all of the tissue heels, it's not completely smooth. So I feel my eyelids dragging over the contactiva layer that covers my orbital implant. So it feels like there's something in my eye. But when I'm wearing my conformer the eyelids go smoothly over this plastic surface and it feels like a regular eye.
Hi, I had my left eye removed in Jan. 2023 so a year and a half ago. I've been having a problem with the prosthetic or maybe its my eye socket atrophying. I cannot get it back in and gave up 2 weeks ago. I wonder if you or anyone reading this has experienced this? It feels much better without it though so I can relate. I've lost my old confirmed need to get one. Went through 15 years of problems after a messed up cataract operation! Very painful blind eye.
Hi Clay, just lost my eye to a melanoma as well. Do you know of any ocularists who would make a mirror prosthetic? I’m planning on getting a “normal” eye but thought it would be sweet to also have a mirror eye. You seem like the type that would know a guy :)
Ocularist are quite clever. They can make just about anything you want. Once your mold is made each additional novelty eye is much, much, cheaper. Some of this will depend on the comfort level with novel materials that aren't FDA approved. They use special FDA approved pigments. So ask your ocularist if they can make one. Maybe they can do them both at the same time. A mirror eye sounds badass!
@@claybutler Did your ocularist give you the mold to keep? I am/was a dentist and the whole process is very similar to making a denture. I bet if I got a hold of my mold I could make an eye with my dental materials that are all FDA approved. Had radiation therapy in 2008 for my original tumor. Had 14 relatively good years until it came back a couple months ago. I'm on week 3 of healing with my conformer. I appreciate your videos, keep it up!
@@k.jordanwillison7799 Yes, my ocularist gave me my mold and said don't lose this and bring it back when you need to make another eye. The mold however is just a really rough casting of your eye socket. It's a good start for sure but there's a lot of fitting, adjusting, polishing and bonding the cornea shell in an oven . However, if you're just going to go for a mirrored eyeball you're going to have a lot of wiggle room. Because it doesn't have to match your other eye at all. It just has to be comfortable to wear. You didn't mention metastasis so congratulations on being met free for all these years. Unfortunately, the cancer is already spread to my liver only 10 months from initial diagnosis. Narrowing down what my first treatment will be.
@@claybutler Geeze man I’m sorry to hear that. That makes me sad. What are the next steps for you? The likelihood of metastasis for me is way up now that it has recurred in my eye. I wish the best for you, where are you living?
@@k.jordanwillison7799 I live in Santa Cruz California. Right by my favorite surf spot. I surf everyday. Right now I'm looking at the Trisalus trial which can be done locally at Stanford. My own oncologist is actually running the study. I'm also looking at immunoembolization (IE). This was invented by Dr Sato in Philadelphia at Jefferson Health. I'm really lucky because I've had the best care right from the beginning. My eye was taken out by Dr Muruthyunjya at Sanford and he's well known as a top ocular oncologist. And now I'm working with Dr Sunil Reddy as my medical oncologist. And then I've brought in Dr Sato to get his opinion as well. So I have a top notch team. Since I'm so healthy, and tumor load in my liver is low, and we caught it early because I was getting liver MRI scans every 3 months, I have every option in my disposal. So the idea is to find the most effective treatments that have the lowest toxicity. And save the really toxic chemo stuff for the end if nothing else works. Unfortunately, as you probably know, we all have a lifetime risk of metastasis in the liver or lungs, and once it gets there it's uncurable. Treatable, but uncurable. So it's kind of like a terminal illness with an ambiguous end date ;) 20 years ago just about everyone died within 2 years, but treatments have improved and we're seeing more and more people make it to 5 years or even a more. I think there's a couple old timers in the 7 to 10 year range. I don't know if you've gotten your tumor genetics yet from Castle but you should definitely have that. My tumor was fairly large at 16 mm wide by 7 mm deep. Less than 5 mm from the center of vision. So it was no surprise when I was designated Class 2 PRAME positive. Class 2 is very high risk of metastasis. The estimated at 72% of metastasis within 5 years. And being PRAME positive allegedly makes it even more aggressive. I was hoping for at least a 2-year breather, but I wasn't surprised when we found three lesions in my liver only 10 months after my initial diagnosis. It's weird knowing that you're going to die much younger than you thought you were. I spend a ridiculous amount of time coming to terms with my own mortality, so I can free myself of that dread, so I can live in the present and actually enjoy my life in the moment. But dealing with this diagnosis is really another part-time job. There's so many decisions to make and there's so many scans and doctor's appointments. And emotionally the weight of your situation kind of tires you out. So my productivity has been in the toilet. I can't focus on work as well, which is hurting my income, which is piling up my debt month after month. Since you had a reoccurrence, often a reoccurring tumor in the eye comes back at a more aggressive Class type. So get that Castle testing. And I highly recommend that for the next 3 years you get a liver MRI with eovist contrast, every 3 months. That's the standard scanning schedule recommended by Dr Sato. Because even if you're you are Class 1A or 1B, that's no guarantee you won't get metastasis early.
I think it's needed. It protects your socket and helps maintain the eyelid shape when not wearing your prosthetic. It's easy to put back in. They just tell you that because they don't want you messing with your eye but it's actually really easy and safe to put back in. With one hand pull the top of your eyelid up towards your forehead with the other one slip it in upward. Then pull the bottom lid down slightly and it will drop right into place.
Actually, I think the conformer is more comfortable than the prosthetic. It's very thin. And it's more comfortable to wear the conformer than it is to go completely bare. And that's because the conformer is very smooth. So when you blink your eyelids go over a very smooth surface. It feels just like a regular eye. However when my conformer is out I can feel my lids going over my orbital implant, and that tissue is kind of lumpy. Not completely smooth. So it feels like my eyelid is dragging over lumpy tissue.
Lost my vision in my left eye when I was 18 due to congenital glaucoma. Increased pressures have made it very painful and I just can't deal with it anymore. It's bad decoration at this point :D Probably JUST before covid I started losing color in my eye and now it's blue. In the process of scheduling my surgery for evisceration. Thanks for sharing this video. I've been kinda gearing myself up for this moment for a VERY long time and it's just good to see people sharing their experiences.
I just had the enucleation surgery for my left eye a month ago. Thank you for this video, I truly enjoyed your humor through it! Humor is definitely how I’m trying to get through this too. Have a rad day!❤
I just got my right one 2 weeks ago
Hi Clay.
I just had my left eyeball removed Nov. 27th 2023. Waiting on my prosthetic (should be early February). Learning to live life with the conformer and everything else that comes along with having 1 eye has been much tougher than I anticipated. I love your videos, your positivity and all your knowledge. My conformer fell out and all other videos had me in a panic, but watching yours I was able to place it back in. Thank you!❤
This is a helpful video. Thanks for sharing
Hi, thank you for this video as I'm due to have my left eye removed for the same reason as you. I'm not bothered about having a prosthetic but I will like you use the conformer mostly.
Thank you for sharing your experience and talking about the conformer. I checked you out on CZcams when I googled "conformer" as I was typing a medical letter and I didn't know what it was.
I had the same thing in my left eye to I had melanoma in the eye and I still go to my doctors the first spots and come back and my liver and I bump into stuff everything that sucks
I didn’t know there is such thing as a conformer until I found your video. My son is considering to get his left eye ball removed. The accident caused his left eye to rupture and his facial skull and teeth fractured quite badly. He has metal implants to keep his face in its shape. Like I mentioned I didn’t know that there is such thing as conformer while my son is deciding whether to let it be or have his eyeball removed. The hospital eye specialist never mentioned anything about having prosthetic eye after we decide for it to be removed. After watching your video, I find is good to have this conformer to maintain its shape. My question is > is it too late for my son to consider having this conformer and prosthetic eye now? The only difference is, he has lost the sensory to his left eye area. It wont blink. He currently puts on the eye patch when he goes out. Its been 2 years now and I do see the shape of his left eye side shrinks. Smaller than the other eye.
I would ask for a conformer. I really like mine. Definitely helps maintain the mileage shape. They have different models with different thicknesses.
For me it feels weird not to have my conformer in. Because once all of the tissue heels, it's not completely smooth. So I feel my eyelids dragging over the contactiva layer that covers my orbital implant. So it feels like there's something in my eye. But when I'm wearing my conformer the eyelids go smoothly over this plastic surface and it feels like a regular eye.
@@claybutler thank you! ❤️ This info helps us to decide on which one we should go for. 😊
👍
Hi, I had my left eye removed in Jan. 2023 so a year and a half ago. I've been having a problem with the prosthetic or maybe its my eye socket atrophying. I cannot get it back in and gave up 2 weeks ago. I wonder if you or anyone reading this has experienced this? It feels much better without it though so I can relate. I've lost my old confirmed need to get one. Went through 15 years of problems after a messed up cataract operation! Very painful blind eye.
I Need one how can i find one
Hi Clay, just lost my eye to a melanoma as well. Do you know of any ocularists who would make a mirror prosthetic? I’m planning on getting a “normal” eye but thought it would be sweet to also have a mirror eye. You seem like the type that would know a guy :)
Ocularist are quite clever. They can make just about anything you want. Once your mold is made each additional novelty eye is much, much, cheaper. Some of this will depend on the comfort level with novel materials that aren't FDA approved. They use special FDA approved pigments.
So ask your ocularist if they can make one. Maybe they can do them both at the same time.
A mirror eye sounds badass!
@@claybutler Did your ocularist give you the mold to keep? I am/was a dentist and the whole process is very similar to making a denture. I bet if I got a hold of my mold I could make an eye with my dental materials that are all FDA approved.
Had radiation therapy in 2008 for my original tumor. Had 14 relatively good years until it came back a couple months ago. I'm on week 3 of healing with my conformer. I appreciate your videos, keep it up!
@@k.jordanwillison7799 Yes, my ocularist gave me my mold and said don't lose this and bring it back when you need to make another eye. The mold however is just a really rough casting of your eye socket. It's a good start for sure but there's a lot of fitting, adjusting, polishing and bonding the cornea shell in an oven .
However, if you're just going to go for a mirrored eyeball you're going to have a lot of wiggle room. Because it doesn't have to match your other eye at all. It just has to be comfortable to wear.
You didn't mention metastasis so congratulations on being met free for all these years. Unfortunately, the cancer is already spread to my liver only 10 months from initial diagnosis. Narrowing down what my first treatment will be.
@@claybutler Geeze man I’m sorry to hear that. That makes me sad. What are the next steps for you? The likelihood of metastasis for me is way up now that it has recurred in my eye. I wish the best for you, where are you living?
@@k.jordanwillison7799 I live in Santa Cruz California. Right by my favorite surf spot. I surf everyday. Right now I'm looking at the Trisalus trial which can be done locally at Stanford. My own oncologist is actually running the study. I'm also looking at immunoembolization (IE). This was invented by Dr Sato in Philadelphia at Jefferson Health.
I'm really lucky because I've had the best care right from the beginning. My eye was taken out by Dr Muruthyunjya at Sanford and he's well known as a top ocular oncologist. And now I'm working with Dr Sunil Reddy as my medical oncologist. And then I've brought in Dr Sato to get his opinion as well.
So I have a top notch team.
Since I'm so healthy, and tumor load in my liver is low, and we caught it early because I was getting liver MRI scans every 3 months, I have every option in my disposal.
So the idea is to find the most effective treatments that have the lowest toxicity. And save the really toxic chemo stuff for the end if nothing else works.
Unfortunately, as you probably know, we all have a lifetime risk of metastasis in the liver or lungs, and once it gets there it's uncurable. Treatable, but uncurable.
So it's kind of like a terminal illness with an ambiguous end date ;)
20 years ago just about everyone died within 2 years, but treatments have improved and we're seeing more and more people make it to 5 years or even a more. I think there's a couple old timers in the 7 to 10 year range.
I don't know if you've gotten your tumor genetics yet from Castle but you should definitely have that.
My tumor was fairly large at 16 mm wide by 7 mm deep. Less than 5 mm from the center of vision. So it was no surprise when I was designated Class 2 PRAME positive.
Class 2 is very high risk of metastasis. The estimated at 72% of metastasis within 5 years. And being PRAME positive allegedly makes it even more aggressive.
I was hoping for at least a 2-year breather, but I wasn't surprised when we found three lesions in my liver only 10 months after my initial diagnosis.
It's weird knowing that you're going to die much younger than you thought you were. I spend a ridiculous amount of time coming to terms with my own mortality, so I can free myself of that dread, so I can live in the present and actually enjoy my life in the moment.
But dealing with this diagnosis is really another part-time job. There's so many decisions to make and there's so many scans and doctor's appointments. And emotionally the weight of your situation kind of tires you out.
So my productivity has been in the toilet. I can't focus on work as well, which is hurting my income, which is piling up my debt month after month.
Since you had a reoccurrence, often a reoccurring tumor in the eye comes back at a more aggressive Class type. So get that Castle testing.
And I highly recommend that for the next 3 years you get a liver MRI with eovist contrast, every 3 months.
That's the standard scanning schedule recommended by Dr Sato. Because even if you're you are Class 1A or 1B, that's no guarantee you won't get metastasis early.
Is the conformer always needed? Mines fell off the first week… and was told not to put it back in.
I think it's needed. It protects your socket and helps maintain the eyelid shape when not wearing your prosthetic. It's easy to put back in. They just tell you that because they don't want you messing with your eye but it's actually really easy and safe to put back in.
With one hand pull the top of your eyelid up towards your forehead with the other one slip it in upward. Then pull the bottom lid down slightly and it will drop right into place.
Is it comfortable to use prosthetic eye?
Can you feel it or do these? conformers hurt?
Actually, I think the conformer is more comfortable than the prosthetic. It's very thin. And it's more comfortable to wear the conformer than it is to go completely bare. And that's because the conformer is very smooth. So when you blink your eyelids go over a very smooth surface. It feels just like a regular eye. However when my conformer is out I can feel my lids going over my orbital implant, and that tissue is kind of lumpy. Not completely smooth. So it feels like my eyelid is dragging over lumpy tissue.