Category: Let's talk
It's been a while since I've come around here consistently, but I'm maybepossibly writing a book and need your help. I have a progressive retinal condition but was born with it. Part of my protag's story is that she begins losing her sight during her senior year of college. I have known many people who have lost their vision later in life, due to a variety of causes, such as accidents, complications with epilepsy, diabetes, or late onset of RP. None of them has lost her/his sight due to retinal detachment, though, which I think is what may suit Sarah's story best. I'm actually debating between that and a late onset of RP, so for now I'm just exploring my options. I knew someone when I was younger who experienced retinal detachment several times as a child, and I know someone distantly now who is experiencing it in her sixties; but I am no longer in touch with the first and am unsure as to whether I should approach the second. So I thought I'd start here and see if I couldn't do some research on the matter. I'd read articles and stuff, and probably will, but for this sort of thing, I think personal testimony is the best way to go. So if you would be willing to share your experience with me, I would so much appreciate it. I'm wondering if any of you has experienced retinal detachment, particularly when you were a young adult or older? Did you try to get it corrected, or did you transition immediately to a life with blindness/visual impairment?
Thank you so much in advance for your help. If you'd rather message me privately than reply to this thread openly, that's totally fine.
Mel
My rights completely detached, and the left is hanging on by a thread. This is due to them not forming completely when I was in the woomb. I've lived with it just fine, say for the risk of taking a hard enough hit to the head, dislodging my left retina for good. If you want to know anything else, just PM me.
Hope this helps.
I had detached retinas a lot as a kid, and have had numerous surgeries to try and correct them. I didn't understand what was going on, though, nor did I have a voice in whether I wanted to have all the surgeries, or anything else concerning my medical care. not sure if that's what you're looking for, but I hope it helps. let me know if you have any more questions.
My retinas were detached when I was born, and I had a surgery to re-attach them when I was just a couple months old. They started to detach again when I was 8 or 9, but at that point I had had many surgeries to correct glaucoma symptoms (BAD ones), and my eyes had healed so quickly that the surgery had to be repeated. When I was told I could have another surgery to reattach my retinas (my right one in particular), I said NO WAY, I was done with it. In some ways I regret that decision, because perhaps I could have had more vision, but that's an outside chance.
Kate
Thanks, you guys! Your stories help a lot!
I'll add that I have retinopathy of prematurity, due to being given 100% oxygen to keep me alive.
Did that cause your retinal detachment? I'm only beginning to learn of co-occurring eye conditions, so this is new territory to me, since I have only one degenerative retinal condition that's been passed down.
Also, is retinal detachment painful? I have heard of this, and it always sounds like it must hurt. Headaches are very debilitating things, so you have my sympathies.
Also Chelsea brought up excellent points, so did Kate, about assumed medical treatment requirements that were risky, probably took a lot of time to heal from, and pretty difficult to say the least, on little kids. Ah, but 'tis an industry like anything else, I guess, and it's all in the marketing on the front end, is how they get that done.
I having no optic nerves, have no perspective except that of the human beings who have been brave enough to share their struggles with this stuff.
I was born with one retina completely detached, and the other partially. I was completely blind in one eye, and partially in the other. I could read large print, see the TV, and all that jazz, but I realize now that with only one eye, I had some spacial perception problems. For example, when getting off the bus at middle school, I had difficulty picking out the path I should take. It was kind of a complicated campus, and though I could see it all, all the intersecting sidewalks confused my brain for a second. I also think I might have been more easily Sun blinded.
My other retina became detached at age 11 when I got clocked in my good eye by a little kid's seatbelt on the bus. (It was accidental.) That eye watered like crazy, and for the rest of that day, I was so dizzy that I nearly fell off stools, and had trouble standing at times. I don't recall any pain, just that my vision got progressively blurrier, so that by the Monday morning after, I was seeing things through this moving curtain of blackness.
I also had corrective surgery in the form of a cilicon bubble in my eye. It worked for a bit, giving me vision to the point where I could tell the colors of those big plastic kiddy lego type blocks. I could even see well enough to walk down the center of my school's hallway by looking up at the row of hazy blurred lights above. However, for whatever reason, the surgery didn't stick, and my vision deteriorated.
Thaaaats my sttooooory
Thanks for your explanation, it helps those of us who have never experienced this, to understand. And, sorry for this, sounds very difficult.
Leo, detachment isn't usually painful. I believe I've heard that it can be accompanied by headaches and of course, if it's become detached due to head trauma, that would hurt, but not the actual detachment. If this is incomplete/wrong, feel free to add/correct.
I have detached retinas, due to Retinopothy of Prematurity. I, too, had several surgeries when I was little, we're talking less than a year old, in an atempt to correct my vision. Nothing worked, and I now have glaucoma in my right eye, which is very unstable due to all the scar tissue and five or so surgeries, which were done on it. I have no vision and only a little light perception, which, I'm sorry to say, I seem to be losing the last few years. I have a friend in Minesota who has retinal detatchment problems and she's an adult. I know her retinal issues cause her a lot of headaches and such.
Hope this helps,
Dawnielle
ROP Baby!
Hi Mel,
I lost my vision solely due to retinal detachment, and there was no head trauma. I too had multiple surgeries, four to be exact before I refused to do anymore lol. I was a fighsty little thing (born with the wisdom of a twenty-five-year-old lol) so my parents did not make me get anymore surgeries. If you have anymore questions please feel free to contact me.
And Leo, I do vaguely remember telling my mom that my eyes were hurting which is what prompted us to go to the hospital, but I don't actually remember what the pain was like (it could have just been a headache, who knows). I definitely remember the dark bubble that would pass through my vision every now and then (described by Haunted).
I have no idea whether that caused the detached retinas. part of being a sheltered kid, was not having any of this explained to me, other than what I've said here.
leo, no, the actual detachment isn't painful. most times, my eyes hurt, whenever I got headaches. that was the extent of it, though.
I can't even say how many surgeries I had to try and correct things, but it was several, that's for sure.
hi,
sorry for resserecting this topic, but I also had retinal detachment
I was born with norrie disease, which among other eye problems causes retinal detachment
though the retinal detachment wasn't the only thing wrong with my eyes
since I was a baby I don't know if it was painful
however when I developed glaucoma apparently I used to cry alot
I had a open sky vitrectomy at 4 months to reatach the retina
however the surgery had no effect except to reduce eye pressure and preserve the shape of my eyeball
I am 100% blind in both eyes mainly due to the retinal detachment
hope that helps
My story is much like what Chels describes. I had several surgeries, as a child, and finally lost what little vision I had when I was 14.
No one explained in much detail what was going on. I had to cope with the emotional side of all this on my own, it just wasn't addressed at all; I wasn't
supposed to be upset by this, apparently.
You may want to deal with that, if you're character is older. Is your story set in the current day? That may also dictate how people around this girl respond,
and also what medical treatment she is given.