Accepting my reality that I’ll soon be monocular. Any tips on what to expect, eyepatch recommendations, etc.?(self.Blind)
submitted by tonystarksboothang
After many surgeries in attempt to repair a severe retinal detachment, I’m having to come to terms that I may eventually lose all vision in my right eye. It wasn’t great to begin with, and currently it’s really just helping me with peripheral vision. I’m trying to remain optimistic, but want to be mentally prepared and also deal with the permanent changes that have already affected me - for example, my eye remains permanently dilated to the nerve damage from all the lasering and procedures. I’m really self conscious about it. I’ve also spent half a year looking like I have a really bad case of pink eye, which makes me reluctant to go out in public or date anyone. None of the eye patches I’ve tried have felt comfortable, and the adhesive ones are all ugly or made for kids. This has been very disruptive to my life and I just want to move forward with my new normal.
I don’t know who else to turn to, it’s been very emotional over the last few days since my last surgery. Any advice is appreciated.
Jabez776 points1y ago
Was in a similar situation about two years ago. Check out Danielle’s Leather on Etsy. It rests on your head instead of squeezing with elastic. I forget mine is there. I’ve had trouble with bright light, so a patch helps with that too. Also there’s a style of sunglasses called Glacier Glasses that have side wraps and darker lenses. So helpful. Good luck!
Smellslikedls3 points1y ago
I’m in a similar situation. 20/400 in my left eye provided some level of stereo vision, and I was able to rely on it for several weeks when I lost all vision in my right eye due to a sudden cataract. I did wear a patch during those weeks and had to test several before I found one that was comfortable.
I had retinal detachment surgery in the left eye about ten days ago and now I can barely detect light or movement. I understand recovery can take time but I expected it would have been better by now. I’m worried about driving, cycling, just about anything that benefited from that little extra boost from my left, but I’ll wait for a few months to see if I can adjust.
tonystarksboothang [OP]2 points1y ago
Did you have a vitrectomy with gas? That was my first inpatient procedure and I really couldn’t see anything for the first week and a half until the gas bubble dissipated.
With silicone oil, everything looked like it was underwater. After my oil was removed, it was like frosted glass for the first several days (I developed a cataract from the oil, and there was blood in my vitreous from the procedure) and now the oil is back in, so it’s similar to the underwater vision but way worse since it’s only been a day after my sixth procedure. The hope is that having had a retinectomy and the oil will help, but there’s not much confidence it will stay when we remove the oil again. Even if it does, the vision will never be the same.
Smellslikedls1 points1y ago
Yes, vitrectomy with gas, plus a scleral buckle and cataract all in one three hour procedure. No silicone oil. I am told that with a buckle the bubble will take longer to dissipate so it might be many weeks before I get to best vision.
What’s frustrating is that these procedures are fraught with uncertainty and the outcomes life changing, but I have to assume most end up better off following surgery.
tonystarksboothang [OP]1 points1y ago
Ah, I had the buckle done with the silicone oil so it was a bit different in terms of recovery. I hope it gets easier for you.
Smellslikedls1 points1y ago
Same with you, good luck on your recovery.
blazblu822 points1y ago
I recently went through this myself. However, I had only a single surgery before Dr wrote off my eye. The retina is still pulling away despite having an oil bubble in that eye still.
Now my left eye is trying to do the same thing. However, it also has a coloboma which makes getting surgery even riskier. So, I have limited options now. Even more so now that I don't have health insurance. Even though I'm seeing around 20/60 in left eye, it has other issues that makes seeing more difficult like photo phobia.
Everything about retinopathy is expensive and I feel like giving up. All the treatments are nothing more than temporary fixes anyways. This disease sucks and I am shocked on how qui kly things deteriated. I went from 2 functioning eyes to 1 function eye within a year or so of diagnosis.
Edit: As far as dealing with the loss, it's made me more emotional during scenes of loss in movies and TV shows. It's also put me through several depressive episodes.
bethyjane2 points1y ago
OP, this is almost my exact story, and your headspace is where I was at a couple of years ago. It’s a really difficult grieving process, and to be honest I did have some therapy to help me deal with it. Life with vision from one eye took a little bit to get used to, but in the end you kind of just forget that you ever were able to see more! The only changes for me now are that I prefer to have people walk on my left side so I can see them, and sometimes my students hide in my ‘blind spot’ to my right! My depth perception is also trash, but I’m not sure it was ever that good to begin with. Having a visually different eye was the hardest part for me; I didn’t wear patches when I had my OG eye in there, and it was very noticeably broken (I called it my haunted raisin/zombie eye). A big thing for me to help me accept my new normal was getting my eye removed. I had to fight for it, because I was only 25 when I first had my detached retina, so I was 28/29 at the time when I was asking for them to take it out. In the end, campaigning to have this level of control over a body part which had been doing its own thing for the last four years really helped with the grieving process, and I had it removed last year. I’m still waiting on my prosthetic (goddamn covid keeps cancelling my appointments!) but I’m so much happier. I make my own patches that I attach to my glasses, because I found ones that went around my head uncomfortable. They’re not perfect, but I’m more than happy to share the pattern/make some and send them to you if you also wear glasses ☺️ please feel free to PM me if you have any questions or need any support - I can really genuinely empathise, and it can be hard when you don’t have anyone else around you that really knows how it feels!
BlindWizard2 points1y ago
I had my left eye removed December 1st 2020 and I wore an eye patch for a little while while waiting on my prosthesis. But once you have your new eye you won't need an eye patch. It stays in almost constantly. Constantly you even sleep in it. They're terribly comfortable. You end up forgetting about it some days.
TechnicalPragmatist1 points1y ago
Are you okay in your other one then is it just one eye blind or is your other one impacted?
If not I suggest start trainings for assistive tech, ils, and also mobility
tonystarksboothang [OP]1 points1y ago
I forgot to respond to this! My left eye is unaffected at this point in time and has 20/20 vision. There’s really not much to be done regarding therapy for my right eye. At this point we’re waiting for it to heal up from my last surgery (retinectomy, laser, silicone oil) to remove my cataract, scar tissue, repair a hole in the retina and put in gas. The success of that surgery will dictate the outcome, because if it doesn’t hold after that, it probably never will.
TechnicalPragmatist1 points1y ago
I see I hope it’s been better. Legally if you have one perfect eye you may not fall under the blind category though.
TripedalCyclops1 points1y ago
Hello, new to the sub but lost all vision in my left eye 10 years ago. I've been thru the surgeries, have limited right eye vision and completely relate. As far as people looking at your eyes, I have never recieved a negative response to anyone noticing. The lack of depth perception- that took a year or two to figure out how to navigate. DM if you want stories/advice :)
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