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Blind and Visually Impaired Community

Full History - 2020 - 02 - 12 - ID#f2m7iz
3
Strange Visual Disturbances (self.Blind)
submitted by SpaceCommanda
I am not blind, nor I am technically 'low vision', although I find myself benefitting from accessibility features, greatly, for those with 'low vision'. That being said, I do have ROP, as a result of premature birth. Was warned about the possibility of detached retinas in my early 30s, along with the warning signs, and after much denial of what was happening, I recognized the signs and discovered I needed laser retinal surgery. This happened four years ago. Meanwhile, my retinas are holding in place, but I am developing cataracts and a year ago, I was told I have macular puckers, which are impacting my central vision (I am in my early 40s). I noticed the distortion before I was told.

Because of an overwhelming and hectic work schedule, I have put off my appointments. Lately, when I wake up in the mornings, my vision is foggy and distorted. The easiest way to describe it is something I remember from childhood. Have you ever sat with your hands pressed over your eyes and then open them...and the light is pulsating and flickering? It is almost like seeing through a fog? It is similar, to me, of an ocular migraine...but it lasts much longer and affects both eyes.

Lately, it is happening more often than not. It was so bad today, that I had my husband drive me to work and had a driver transport me to complete needed tasks for work. I am scared.

I just want to know, besides obviously making an eye appointment, if anyone has experienced this or can explain what it means.

Thank you in advance.
Amonwilde 2 points 3y ago
I have retinitis pigmentosa and get this, along with other visual artifacts and distortions. You should see a retinal specialist and soon. If you're putting off these appointments for work you're making the wrong call. Wish I could say more but I'm not a doctor, but I wish you the best of luck.
SpaceCommanda [OP] 1 points 3y ago
Thank you. And yes, you're right. I am little good to my employers if I am blind.
Amonwilde 2 points 3y ago
Not true, and likely not a popular sentiment around here, but no reason to leap into blindness. If the worst happens, you'll still be valuable.
SpaceCommanda [OP] 1 points 3y ago
I realize that and wasn't trying to be unthoughtful or insensitive, but some functions of my job would be difficult. I haven't been in my current industry very long, either, so I don't know how valuable I would be to them. But now that you mention it, it does make me wonder how I would be accommodated. I guess I need to do my research.
razzretina 1 points 3y ago
With ROP you can't wait. The retinas can detach on their own and if you don't get that looked at right away the damage can be permanent. I know you're scared, but trust me, trying to pretend this isn't happening is going to make your situation worse. Contact your retina specialist and make an emergency appointment immediatly. They will usually see you even in the evening if you're seeing new things and have a history of previous detachments, which it sounds like you do.
SpaceCommanda [OP] 2 points 3y ago
I have actually never experienced any tears or detachments, but because of the ROP, I have a massive amount of scar tissue in the periphery of my eyes that causes traction. My surgeon chose to do the laser surgery to tack down my retinas before they 'wadded up like napkins'. I also have lattice degeneration, which is another reason he chose that route. I may need a double vitrectomy for the puckers, but because of my unusual retinas, he is choosing to hold off until absolutely necessary. If I have the procedure done, he wants to do another round of laser.
razzretina 2 points 3y ago
ROP can be very hard to predict. I’ve got it too and have always been told to report any kind of changes immediately in case it’s a sign of something going wrong. It sounds like you’ve had a lot of work done on your retinas! Some of this may be due to the cataracts if you haven’t had them removed already; I picked up Charles Bonnet syndrome from mine.
SpaceCommanda [OP] 2 points 3y ago
What's amazing to me is that I lived for over 30 years never realizing I had the condition, until I had a routine eye exam and was asked how early I had been born.

My cataracts are small for now, but from what I understand, the vitrectomy will speed up the process.
razzretina 2 points 3y ago
That is impressive! Less severe cases of ROP really aren’t too bothersome. A lot of folks with ROP aren’t very impacted by it.
Cataracts are pretty common with ROP. Hopefully they’ll be able to take yours out soon and that’ll be the last of the eye surgeries. Good luck with the vitrectomy!
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