Detached Retina/PVR Update: 14 Months Later With FAQ

The sketch of my retina with shading that represents the oil.

The sketch of my retina with shading that represents the oil.

Now it is 14 months after the fifth and, at this point, last surgery on my right retina. My eye, which has proliferative vitro retinopathy (PVR), is stable, though it has oil inside, which distorts my vision.

On a retina listserv that I read regularly, I’ve noticed that several people who have been through multiple surgeries on a single eye are wondering if — after all that looking down and lying in various positions — life ever gets back to normal.

The answer in my case is yes. I’ll explain and also answer a few questions below.

My eye is stable and has been so for 14 months. It does not see anywhere as clearly as it used to except for some issues with double images (which my brain seems to have learned how to turn off), low acuity, and glare, I am doing well. My right eye, which by the way also had a single surgery (see the earliest retina posts), has now been stable for two years and nine months and sees clearly.

Q: Do I still worry?
A: Yes, I worry, but my husband regularly points out that this is not within my power to control, so I try to get over it. I do know that I may possibly experience more retina problems.

Q: Am I as active as I used to be?
A: Yes, but I avoid really bumpy activities such as aerobics. Also, I am careful with weights, but I regularly use five-pound and eight-pound weights when I exercise. I need to find some aerobic exercise that I am comfortable with and my eye is likewise.

Q: Am I wearing my contact lenses?
A: No, I’m wearing several pairs of glasses because my eyes have changed gradually over the 14 months. New ones are good to have, but the old ones can also be worn at times, so I’ve had some fun selecting different colored frames. I get the prescriptions from my low vision specialist, but I order my glasses online at Warby Parker.

Q: Do I use reading glasses?
A: Yes. I have some for reading books, some for using computers, and some for  reading music. I play the piano, so at my first visit to the low vision specialist I asked that we concentrate on the music. She made some suggestions about reading glasses. I purchase most of my reading glasses at Peepers.

Q: Are there any places that present extra obstacles to my vision?
A: Yes, I am less than secure in darkened theaters where I have seats in high, steep balconies. Also in bleachers when I attend athletic events. I’ve thought of treating myself to an elegant, but not too expensive, cane with a decorative handle to use in those situations, but I haven’t made a decision about it yet. I did purchase a Brazos walking stick for walks in snow and ice, which is really helpful. I can get along fine without these things, but falls do increase as people get older so I am paying attention and perhaps attending to more than one potential problem.

Q: How many bubbles did I have in the eye with the PVR?
A:.  Two. The first one had more staying power that most bubbles and took more than six weeks to dissipate. The next one was only in for 10 days before I went back for surgery to put in the oil. The oil is in there for the foreseeable future because the possibility is high that my retina would detach again without the oil.

Q: Would I have done anything differently?
A: Yes, when my surgeon wanted to put in the scleral buckle, I asked if we could try without it — I was really fearful about it even though I did not go online to look at people’s stories. It just frightened me. Looking back, I wish I had conquered my fear and gone through with the buckle, although the surgeon says that my eye was heading toward PVR and that decision may not have made any difference. In any event, he was right.

Q: Do I follow the retina research?
A: Yes, but so far it looks like most of the breakthroughs are in animals or for macular degeneration. Perhaps some of this research will carry over to PVR. I do have a Google alert for PVR.

Q: Do I worry when I travel.
A: Not much. We spend quite a bit of time at a summer location, so last summer I arranged to see a retina surgeon up there, more for my security than anything else. I worried that if something happened, it would take me 10 hours to get home, and I wanted to know that I had good care available in both places.

Q: Do I know why all these detachments occurred?
A: No, but I do keep asking myself that question. I do believe that more health information should be conveyed earlier by ophthalmologists so that people understand a bit more about retina health — for instance how the retina may be  affected by heavy coughing — before something goes wrong. Every adult that I talk to has absolutely no idea about detached retinas until something goes wrong, We should all know more.

Any other questions?

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Do you want to share with other people who have experienced detached retinas? The retina posts here on AsOurParentsAge are descriptive in nature — and this is not a high-traffic blog where people can share experiences. If you seek a group with good conversation and support, check out and consider subscribing to the Detached Retina Group over at Yahoo.

Detached Retina Group Email Addresses

7 thoughts on “Detached Retina/PVR Update: 14 Months Later With FAQ

  1. I have silicone oil in my left eye for 2 years . My eye hurts most all the time ( to dry). I Had one pvr surgery. The dr says leave the oil in and deal with the pain. my vision is 20/400 I look at web sites a lot. Your writing is the best that I have come across. Thank you. It helps to know that I’m not the only one. Sounds like you have a great surgeon. I Will keep checking on you. Good luck! Tim

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    • Hi Tim. Thanks for your comment. I do not have any pain, just a really irritating dry eye. I suggest that you get another opinion to see if you can do something more about pain control. You might also like to check in with the Yahoo detached retina group. The info is on my detached retina page.

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  2. I realize it’s been 2 years since this post and that you may not even receive alerts for new comments but I wanted to say thank you for such a detailed and honest telling of your retina story. I’m in my late 30s, pregnant (very early) with my second child, while chasing after an active preschooler. A little over a month ago, I underwent a scleral buckle procedure. I thought my healing was going well until floaters, flashes, and shadows reappeared. I was diagnosed with PVR and had a vitrectomy about 4 days ago. I was anxious about all of the long term effects a vitrectomy posed–a possible lensectomy (which thankfully wasn’t needed), risk for cataracts earlier in life, possible need for bifocals, and so on. Today, I’m continuing to recover, hoping that the neck and shoulder pain is well worth it to keep that oil bubble in place.

    In reading your account, I’ve managed to come to some realizations and even acceptance. I’d say that I’m not someone whose spirit is easily crushed, but I’ve been overly optimistic about this whole thing. I need to prepare myself for the marathon, as you call it, in case it is what’s in store for me.

    I hope that you continue to recover and heal and that your days in the OR are over. Thank you again for sharing your experiences.

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    • Remember that resilience is programmed into all of us and I hope that comes through in my posts, even though some of them were written when I was pretty worried and confused. I hope things are going well for you. Sometimes I grow nervous about my second eye, since my first one sees so poorly, but I try hard to remember how hard my physicians work and how I know how to solve problems if another issue arises. So far so good…

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  3. I just found your site about PVR.Thank you for posting. I am new to this world. An endogenous infection in my eye caused the retina to detach and after the bubble failed the doctor used oil. This was only one week ago, so I realize I have a ways to go before any stability. I was interested in your comments about the patch and hoping that my brain will compensate for the double vision. I seem to do ok reading my iphone and computer and am thinking that back lighting makes it easier. I am considering buying a tablet to download books. I love to read. Any thoughts about this?

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    • Hi Susan. Yes, do all of those things. Lighting is especially important. Sometimes I visit friends and family who like their rooms to be low lit, I tend to have problems judging space and reading. In terms of double vision, I’ve found that when I concentrate on something my brain simply forgets about the double vision. When I think about it I suddenly notice it again. I hope things are going well. In my case I think the oil will be in my eye forever — unless some super new retina treatment comes along.

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