Blind and Visually Impaired Community
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Anyone else with ROP experience anything like this? I feel like my vision is getting worse, but eye exams show no change. (self.Blind)
submitted by codeplaysleep
This is a really weird experience. For the past few months, I've felt like my vision has gotten worse in subtle ways that are hard to measure. I has an eye exam about 2 months ago (refractive tests, retina exam with photos taken, pressure checked, checked lens implant positioning, etc.) and everything looks stable and unchanged.
Quick background: ROP, 20/100 vision in right eye, with about a 15 degree visual field, left eye is prosthetic, IOL implant in my right eye, many eye surgeries, including a couple failed laser procedures for angle-closure glaucoma and one surgical keyhole iridectomy for said glaucoma, nystagmus, a mild astigmatism, posterior vitreous detachment, another surgery to treat posterior capsule opacification after the cataract surgery.
But here's what I'm experiencing:
* I notice my nystagmus a lot more, especially at night, or if I'm tired.
* My field of vision seems narrower than it used to be, despite my retina beingunchanged.
* Often, I just get.... overwhelmed by visual stimuli whereas I didn't before. It feels like I can't visually process the things around me quickly enough to safely navigate and so I've started using my cane more.
I actually kind of feel like a lot of this could all boil down to changes to my nystagmus, or maybe some kind of declining ability to compensate for it now that I'm approaching my mid 40's. I got new glasses last year, but my prescription probably hasn't really changed much since then. It's very hard to measure for me, given everything going on with my eye.
I haven't had a visual field test, but I'm thinking of calling my optometrist and scheduling one after the first of the year - just waiting for new and better insurance to kick in.
Quick background: ROP, 20/100 vision in right eye, with about a 15 degree visual field, left eye is prosthetic, IOL implant in my right eye, many eye surgeries, including a couple failed laser procedures for angle-closure glaucoma and one surgical keyhole iridectomy for said glaucoma, nystagmus, a mild astigmatism, posterior vitreous detachment, another surgery to treat posterior capsule opacification after the cataract surgery.
But here's what I'm experiencing:
* I notice my nystagmus a lot more, especially at night, or if I'm tired.
* My field of vision seems narrower than it used to be, despite my retina beingunchanged.
* Often, I just get.... overwhelmed by visual stimuli whereas I didn't before. It feels like I can't visually process the things around me quickly enough to safely navigate and so I've started using my cane more.
I actually kind of feel like a lot of this could all boil down to changes to my nystagmus, or maybe some kind of declining ability to compensate for it now that I'm approaching my mid 40's. I got new glasses last year, but my prescription probably hasn't really changed much since then. It's very hard to measure for me, given everything going on with my eye.
I haven't had a visual field test, but I'm thinking of calling my optometrist and scheduling one after the first of the year - just waiting for new and better insurance to kick in.
razzretina 3 points 3y ago
I find that even my retina specialist doesn’t always believe me when I describe problems, which is frustrating. Are you able to get a second opinion from another specialist (that’s how I found out I had Charles Bonnette syndrome)? If you can get a proper low vision assessment from a low vision centre, they can tell you more. The eye doc isn’t really equipped to do much with us or tell us anything practical.
codeplaysleep [OP] 3 points 3y ago
I haven't been to a low vision center in a long time. You're right, it's probably a good idea to go again. They may have more ideas.
I think with most doctors, even the best ones, there's a disconnect between what they can measurably assess your vision to be and what your functional vision actually is out in the real world, with complex environments and crowds and vehicles and weird lighting conditions, etc.
I think with most doctors, even the best ones, there's a disconnect between what they can measurably assess your vision to be and what your functional vision actually is out in the real world, with complex environments and crowds and vehicles and weird lighting conditions, etc.
razzretina 3 points 3y ago
Yeah, the thing with pretty much any eye doctor, including a specialist in specific diseases that cause blindness, is a doctor and nothing else. The people who can tell you more about what you see and how you do it are orientation and mobility specialists, low vision specialists, teachers of the blind/visually impaired, etc. Those are the folks who train in life practicalities. A doctor's job is kind of just to give you a name to a thing or a starting point to get more nuanced help.
blackberrybunny 3 points 3y ago
Hi. I'm Molly, a 51 year old woman who was born legally blind, ROP. My acuity at its best is 20/200 and 20/400. Several years ago, when I was 36, I had quite thick cataracts that were removed, and new lenses put in. Really made a difference for me. But I'm still legally blind, and always will be. My have exotropia of my left eye, which also has some kind of "right angle" something or other--I forgot the word. . . But it means that when looking with both eyes at something, my left eye goes outward. When covering my right eye, my left eye looks straight ahead like it should.
I don't know what my field of vision is, but this exotropia does give me double vision sometimes. Especially when tired. I also have vitreous separation in my left eye. I noticed it a couple of years ago when it suddenly seemed like I was looking through this gauzy, billowing, constantly moving, dark curtain. I didn't know how to describe it, but it's from the separation and it's gotten worse. Somehow, my optic nerve and brain get together to override most of it, making it less noticeable, unless I really focus on it. It's amazing what your brain and optic nerve can do when they work together!
Like you, I have severe nystagmus, both eyes, and it is TIRING! People who don't have vision problems have no idea. It's exhausting something. Especially when I'm tired. I can definitely feel where you are coming from, but I cannot say what is causing your distress. Just know you are not alone. Hang in there!
I don't know what my field of vision is, but this exotropia does give me double vision sometimes. Especially when tired. I also have vitreous separation in my left eye. I noticed it a couple of years ago when it suddenly seemed like I was looking through this gauzy, billowing, constantly moving, dark curtain. I didn't know how to describe it, but it's from the separation and it's gotten worse. Somehow, my optic nerve and brain get together to override most of it, making it less noticeable, unless I really focus on it. It's amazing what your brain and optic nerve can do when they work together!
Like you, I have severe nystagmus, both eyes, and it is TIRING! People who don't have vision problems have no idea. It's exhausting something. Especially when I'm tired. I can definitely feel where you are coming from, but I cannot say what is causing your distress. Just know you are not alone. Hang in there!
codeplaysleep [OP] 3 points 3y ago
Yeah, it's amazing how physically exhausting eye strain can be, and then the more tired I get, the harder it is to focus on things and the less my brain is willing and able to compensate for things.
Fortunately, my near vision hasn't really been affected much, so I can still work without issue, but I definitely notice a difference when I'm doing other things.
Fortunately, my near vision hasn't really been affected much, so I can still work without issue, but I definitely notice a difference when I'm doing other things.
blackberrybunny 1 points 3y ago
I am the same-- my up close vision does well with my nystagmus, but my far away vision really suffers.
Kids used to tease me in school and ask me why my 'eyes were wiggling' and I had no idea what they were talking about. Because sometimes you can't even tell it is happening. (Until you are very tired, like we were talking about). It's amazing how our brain and optic nerve work together.
Kids used to tease me in school and ask me why my 'eyes were wiggling' and I had no idea what they were talking about. Because sometimes you can't even tell it is happening. (Until you are very tired, like we were talking about). It's amazing how our brain and optic nerve work together.
codeplaysleep [OP] 2 points 3y ago
I suspect mine actually gets worse when I'm trying to look at things in the distance than it does when I'm looking at stuff up close. But yeah... my brain's doing a lot of compensating, which is kind of amazing.
LittleTay 2 points 3y ago
You and I are quite similar.
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I've had many from reattachment surgery, laser surgery, a second reattachment surgery (first one failed), more laser, early signs of glaucoma (high eye pressure in both eyes), and cataracts. (I might even be in a record book somewhere because I had scar tissue form around the new lens they put in, in an odd way. They took many, many pictures of it, none of which I don't have).
​
My vision is 20/70 (left), 20/400 (right). those are the only numbers I ever remember.
I have yet to learn how to use a cane, and yet to learn braille. I feel like I really should take the initiative sometime soon...
​
anyway, my vision is still getting worse, very slowly though. I have been noticing it more and more lately, such as clouded vision. As far as a visual field test, I've had multiple and I don't have any peripheral vision on the top in both eyes, little on the left in my left eye and little on the right in my right eye.
​
My doctors told me that my vision will only get worse, there is no getting better. I've lived with this my whole life, and I have made it this far! So what will a little bit more vision loss do, kill me? :P
​
I've had many from reattachment surgery, laser surgery, a second reattachment surgery (first one failed), more laser, early signs of glaucoma (high eye pressure in both eyes), and cataracts. (I might even be in a record book somewhere because I had scar tissue form around the new lens they put in, in an odd way. They took many, many pictures of it, none of which I don't have).
​
My vision is 20/70 (left), 20/400 (right). those are the only numbers I ever remember.
I have yet to learn how to use a cane, and yet to learn braille. I feel like I really should take the initiative sometime soon...
​
anyway, my vision is still getting worse, very slowly though. I have been noticing it more and more lately, such as clouded vision. As far as a visual field test, I've had multiple and I don't have any peripheral vision on the top in both eyes, little on the left in my left eye and little on the right in my right eye.
​
My doctors told me that my vision will only get worse, there is no getting better. I've lived with this my whole life, and I have made it this far! So what will a little bit more vision loss do, kill me? :P
codeplaysleep [OP] 1 points 3y ago
Haha that's kind of how I feel. As long as I can work, the rest will sort itself out, and if I get to a point where I can't work, well... I've paid a lot of money into medicare and social security over the years, so I won't feel guilty about disability if/when I need it.
Unless I have something like a retina detachment that can't be repaired or develop an unrelated eye disease like macular degeneration as I get older, I don't think I'll ever be totally blind (which is great), but every few years since I was about 30, there's some kind of noticeable shift that takes some time to adapt to again. I seem to be in another one of those stages.
Unless I have something like a retina detachment that can't be repaired or develop an unrelated eye disease like macular degeneration as I get older, I don't think I'll ever be totally blind (which is great), but every few years since I was about 30, there's some kind of noticeable shift that takes some time to adapt to again. I seem to be in another one of those stages.
theawesomeaquarist 2 points 3y ago
My nystagmus is really changing currently getting testing done but it is making my vision detorate
codeplaysleep [OP] 1 points 3y ago
What sort of testing does that entail? I don't know that mine's ever been measured by any sort of metric, just noted that I have it. I'm not sure there's a baseline to compare it to.
theawesomeaquarist 2 points 3y ago
MRI other tests but my nystagmus has been really messing with my vision.
It also has effected my vision in general and I'm recognising symtoms of acquired nystagmus Even thought it's congenital
It also has effected my vision in general and I'm recognising symtoms of acquired nystagmus Even thought it's congenital
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