Analysis I’m tired of eye surgeries and subsequent recovery issues and time. Need prayers please. Thoughts, whatever. (1 Viewer)

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Sorry to hear about what you're going through. Your strength and positivity are inspiring.

So what is the medical name of your condition? Is it just "degenerative eye disease"? Is that like macular degeneration?

Is the pain all from your eyes? If you did have your eyes removed would that eliminate the pain? You've had transplants before, is there a possibility that new transplants would solve the problem, or is that not an option? What's the best and worst that could happen going forward?

If you're often reading your computer monitor inches from the screen, I'd think that would not be good for your eyes, eh?
 
mjcouvi said:
Sorry to hear about what you're going through. Your strength and positivity are inspiring.

So what is the medical name of your condition? Is it just "degenerative eye disease"? Is that like macular degeneration?

Is the pain all from your eyes? If you did have your eyes removed would that eliminate the pain? You've had transplants before, is there a possibility that new transplants would solve the problem, or is that not an option? What's the best and worst that could happen going forward?

If you're often reading your computer monitor inches from the screen, I'd think that would not be good for your eyes, eh?
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Thanks for the kind words MJC.
I have a plethora of issues from the neck up (ha).
The degenerative disease in the eyes is called Keratoconus. I’ve been dealing with it since 18. Old hat there. I am currently black blind in left eye (zero vision) and 20/600 to 20/800 right eye and climbing the wrong way lol. Too much to type about all the procedures I’ve had. Don’t know that I want to do that anymore. I’m tired. Just would like this pain to go. If I get no real reprieve I will push my surgeon to remove the left eye. Yes, looking at devices hurts, reading hurts, any light hurts...but being that reading is my favorite thing to do for my whole life I don’t see myself stopping until I either die or lose both eyes all the way.

Keratoconus:
I see 9 or so images of anything I look at all times. When my heart beats it is exacerbated as all images move. It is very disconcerting. Never until recently has it stopped me.
 
This is probably a dumb question since you've been going through this for decades and probably know every thing that's possible to know about it, but have you had the corneal cross-linking procedure? I just ask because when I looked up Keratoconus I found that was one of the only FDA approved treatments and it was just approved in 2016, so it's fairly new. If you did have that done, what were the results?
 
Wow man... can't imagine going through that. I hope you find some way to get off all those meds and find some relief. I will definitely say a prayer for you.
 
my father has a brain tumor - not malignant, but ever growing. It created pressure on his optic nerve, eventually severing it as it grew. It also forced its eye out of the socket, so for most of my life he had a protruding eye.

It cost him a life in football, because he was blind in one eye. He lost a marksmanship scholarship as he had switch eyes for his shooting.

Eventually, he had the eye removed because the pressure and the pain was too much - and he's dealing with spinal stenosis which is crushing his spine, literally. The pain I've seen him endure for 20+years is incredible.

The eye was discolored and protruding and painful, so they just removed it. They gave him a glass eye, but his muscles and the tissue around the eye had lost its ability to 'hold' the eye in place (I guess akin to muscular atrophy), so the glass eye kept falling out.

For now, he just rocks an eye patch in public. It's made a 6'9", 290lb former offensive lineman look all the scarier.

Thoughts are with you, man. I don't know how similar your condition would be to my father's, but it seems close enough that I understand - indirectly - how trying and painful this is.

Take care and, sincerely, best of luck in the recovery in whatever form it eventually takes.
 
So sorry man, didn't know you were in so much pain. Always enjoy reading your posts and consider you one of the great ones on here!
 
Oye said:
my father has a brain tumor - not malignant, but ever growing. It created pressure on his optic nerve, eventually severing it as it grew. It also forced its eye out of the socket, so for most of my life he had a protruding eye.

It cost him a life in football, because he was blind in one eye. He lost a marksmanship scholarship as he had switch eyes for his shooting.

Eventually, he had the eye removed because the pressure and the pain was too much - and he's dealing with spinal stenosis which is crushing his spine, literally. The pain I've seen him endure for 20+years is incredible.

The eye was discolored and protruding and painful, so they just removed it. They gave him a glass eye, but his muscles and the tissue around the eye had lost its ability to 'hold' the eye in place (I guess akin to muscular atrophy), so the glass eye kept falling out.

For now, he just rocks an eye patch in public. It's made a 6'9", 290lb former offensive lineman look all the scarier.

Thoughts are with you, man. I don't know how similar your condition would be to my father's, but it seems close enough that I understand - indirectly - how trying and painful this is.

Take care and, sincerely, best of luck in the recovery in whatever form it eventually takes.
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Thanks for that incredible story Oye. Now you must tell your dad I am thinking of him as well!
 
mjcouvi said:
This is probably a dumb question since you've been going through this for decades and probably know every thing that's possible to know about it, but have you had the corneal cross-linking procedure? I just ask because when I looked up Keratoconus I found that was one of the only FDA approved treatments and it was just approved in 2016, so it's fairly new. If you did have that done, what were the results?
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Not dumb at all MJC.

Tried. Not a good candidate as my corneas even before my trauma with the left are too advanced in the disease and thin, for the crosslink to hold.
My wife (bless her) has had me literally everywhere to try with all experts. It always ends the same. A bunch of amazing docs calling in other docs to marvel at my eyes and to showcase the most advanced state of Keratoconus there is. Kicker is I’m so over that disease and am ok with it....I abide. This pain has zero correlation to it.

I’m the 2nd person in this country to have had a lasik over a transplant. I’m in the medical history books lol.
 
Oye said:
my father has a brain tumor - not malignant, but ever growing. It created pressure on his optic nerve, eventually severing it as it grew. It also forced its eye out of the socket, so for most of my life he had a protruding eye.

It cost him a life in football, because he was blind in one eye. He lost a marksmanship scholarship as he had switch eyes for his shooting.

Eventually, he had the eye removed because the pressure and the pain was too much - and he's dealing with spinal stenosis which is crushing his spine, literally. The pain I've seen him endure for 20+years is incredible.

The eye was discolored and protruding and painful, so they just removed it. They gave him a glass eye, but his muscles and the tissue around the eye had lost its ability to 'hold' the eye in place (I guess akin to muscular atrophy), so the glass eye kept falling out.

For now, he just rocks an eye patch in public. It's made a 6'9", 290lb former offensive lineman look all the scarier.

Thoughts are with you, man. I don't know how similar your condition would be to my father's, but it seems close enough that I understand - indirectly - how trying and painful this is.

Take care and, sincerely, best of luck in the recovery in whatever form it eventually takes.
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TY Oye and so sorry to hear that about your father. This is very similar. And I’ve had the tumors too, 7 of em, benign....in my head and they indeed sucked.

My prayers are with your father.
I truly wish your father all the best in his battles. And I can definitely empathize with all but the spinal issues. TY again.

Oh and I rock the patch too. My friends call me the governor or one eyed willy, and ask me where the treasure is. (Goonies) it makes me laugh. If the surgeon can’t fix this pain and or take this eye out, I will remove it myself.
 
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nolaswede said:
So sorry man, didn't know you were in so much pain. Always enjoy reading your posts and consider you one of the great ones on here!
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TY for the kind words nolaswede. Usually (pre this latest issue) I’ve always preferred to be like the furniture on here, kind of just there and in the background. (SuperTramp subtle nod there, Breakfast in America)
It’s funny my time here since 97 and my post count was low low for all those years....now it’s skyrocketed. Lol

SR has been like family to me, since I’ve been hard down and I’m thankful. It offers me a certain peace if that makes sense.
 
p0pe said:
Wow man... can't imagine going through that. I hope you find some way to get off all those meds and find some relief. I will definitely say a prayer for you.
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Pope-sincerely thank you. I want off these meds too. I don’t even take aspirins and such under normal circumstances. The prayer is most appreciated.
 
@SystemShock
I just awoke to blood streaming down from my left eye, tried to film it but got so much on the phone it didn’t take properly. ??
Chuckling about your post still as I type this and it’s still good for the soul.

It may sound silly and I don’t care, today has been the best day I’ve had pain wise in many many days...I feel reinvigorated and a tad more confident in my ability to fight the inevitable next episode. And I think it’s because of you guys. Just plain helping to lift my spirits. My willpower gauge got a boost.
Just like with st dudes KWTPF that Bill also does a wonderful job of filling in at:
Pull for health. Always pull for health. If you have that, just like Drew said to his little ones, anything is possible.

Thank you, truly thank you.

Joshua
 

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