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Fri Mar 17, 2017 6:28 pm

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Posts: 10

I've had 11 surgeries in my right eye for retinal detachment and then just about every complication one can get after the first surgery. Surgeon made many mistakes, terrible travesty, long story.... I've also had one surgery in my left eye for retinal detachment. I had a different doctor and he did a wonderful job, scleral buckle and vitrectomy.

1. I am 99% blind in my right eye but there is so much nerve damage that I think what's happening is that my right eye still flashes internally and I think it's sending signals to my brain. This was my dominant eye and I think what's happening is that my brain is interpreting these signals and it's causing my overall visual field to transiently fade in and out in tiny little splotches at random, so it's like a light fog that comes and goes. Doesn't go black, just grey/foggy. However I also have a cataract in my good eye (mild) and more importantly an epiretinal membrane that has started to contract and thicken. It's hard to tell if the visual disturbance is from the membrane. **has anyone experienced visual disturbance like this in an eye that has an epiretinal membrane and did removing the membrane fix it?

2 my right eye is shrinking and I need it either eviscerated or enucleated. I've been reading if evisceration is possible that is the preferred route, and also avoid the peg in the eye. Problem is, since the optic nerve will still be intact in that case, I'm worried this visual disturbance which is debilitating might not stop if it's indeed due to the right eye (and from what I see in my field of view I think it is... but, during an evisceration they remove everything in the eye, including retina and choroid, so maybe that will kill all blood supply and indeed the disturbance will go away.

3. Question on the implant... there is some risk of the implant extruding. What exactly does that mean. Also, I watched a video of someone putting an implant in, and those implants (covers that go over the eye) are huge! They are held in place basically by the skin around the eye, and the eyelid. Don't these implants hurt after they're inserted??? Won't your eyes get dry and then you'd get massive friction between implant and eyelid?? Can you feel the implant in the eye?? I haven't read about anyone complaining they can feel it, I am boggled by that. I HOPE I won't be able to feel it, but if I do can anything be done to stop that discomfort?

4. Finally, after an eye is removed, does one experience "phantom eye" phenomenon (like phantom limb)? If so, what is it like? Please describe it. Does it go away?

Thank you everyone for your help! I'm so depressed about all of this, I've had 12 eye surgeries already... I was handling it well until my good eye started acting flaky (the visual disturbance mentioned above). I really hope that's not due to epiretinal membrane on my good retina. There's also a lot of flashing in the periphery of my good eye (looks like cobwebs when it flashes), and I think this is leftover vitreous. I'm really worried that is causing traction and might tear the food retina. I mean it's definitely casing traction or else I wouldn't see any flashing. Doctor says don't worry about it but the flashing went from zero two years ago to major flashing now... ugh! I hate all this. I'd give everything to go back to before all this happened. 4.5 years now... thank you all!



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Fri Mar 17, 2017 11:37 pm

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Joined: Mon Jan 05, 2015 3:10 pm
Posts: 2000

all I can tell you is I had eye cancer and had an enucleation, no choice, no problem...no phantom eye syndrome either and no pain and when I got my custom-made eye...it looked pretty good...I hope you will get a lot of responses to your questions, I bet you will...Lil

_________________
_____________________
Choroidal Melanoma Tumor that was 3/4ths
in size covering my retina and detached it too.
I was diagnosed on July 3, 2014 and had my
Enucleation July 9, 2014 (Female 63)



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Tue Mar 21, 2017 2:28 pm

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Joined: Tue Aug 24, 2010 10:23 pm
Posts: 413
Location: New Orleans

Once an eye is removed, there is no retina to send a signal through the optic nerve. I never had any "phantom eye" symptoms, but all of our experiences are different.

Like, Lil, I had no choice but to have my infected eye removed. My recovery was fairly quick and almost painless. My ocularist did a great job of making my new "eye" match its twin. At first it was noticeably larger than the other (protruding a little) , but within a few weeks it settled into its new home very nicely, and no one could tell which one was the fake. I have never taken mine out. I go to the ocularist twice a year to have it cleaned and polished. Otherwise, I don't even know that it is there.When the weather is cold and dry it gets a little scratchy, but eye drops solve that problem.

You have been down a long, painful road, and hopefully that will soon end. Keep us posted.

_________________
M 71. Enucleation 7/10/2010 following uncontrolled fungal infection.


In the land of the blind, a one-eyed man is king.
Erasmus



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Tue Mar 21, 2017 2:46 pm

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Joined: Sun Apr 12, 2015 5:41 pm
Posts: 10

Thank you all so far. Very helpful.

What I'd really like to know is, does this huge plastic implant that you have to insert under your eyelids hurt at all? It's seems so big, and it seems like you would definitely feel this large foreign object in your eye socket, especially under your upper and lower lids. Furthermore, it seems to me that if your eyes are dry it could be a disaster; the prosthetic would rub against your eyelid and start slipping, and also cause a lot of pain to the eyelid (maybe even a sensation that you have sand in your eyes).

I don't know... I haven't read anyone complaining about this. So it must be that once you manually insert the prosthetic you don't feel a thing? That would be awesome... I just hope the same is true for me because it would be a further travesty if the prosthetic bothered me enough that I was unable to wear it. Also, doesn't it ever slip? I read about the pegs, and I'd rather not get a peg, I heard they are really flaky and can easily be dislodged.

Thanks again!

PS I'm leaning towards evisceration because at least the optic verve stays attached. I also hold out hope that a miracle cure will come along (ie grow choroid and retina in the lab), and have that installed... maybe one day the eye could work again? It's a huge long shot, but it's one step better than an enucleation, where everything is removed and the optic nerve is cut...



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Tue Mar 21, 2017 4:31 pm

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I think you are reading to much...if it is done correctky, nothing slips, nothing slides...and if it feels dry, there are plenty of lubricants to try...Lil

_________________
_____________________
Choroidal Melanoma Tumor that was 3/4ths
in size covering my retina and detached it too.
I was diagnosed on July 3, 2014 and had my
Enucleation July 9, 2014 (Female 63)



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Tue Mar 21, 2017 7:33 pm

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Joined: Tue Aug 24, 2010 10:23 pm
Posts: 413
Location: New Orleans

Your tear glands and ducts will remain intact following either surgery. The same tears that now lubricate your natural eye will do just as good a job of lubricating the fake.

_________________
M 71. Enucleation 7/10/2010 following uncontrolled fungal infection.


In the land of the blind, a one-eyed man is king.
Erasmus



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