Officially diagnosed last week: Cystoid Macular Edema (Irvine-Gass Syndrome). Has anyone listening in had this? How long did it take to resolve? Am currently on Durezol twice daily, and one drop daily of Prolensa, indefinitely until vision clears. I believe it began towards the end of the first week after surgery, as that is when I began to wake in the mornings with slightly blurrier vision. It came on gradually and got a little bit worse each day. Things began to look dark and distorted out of operated eye. It took awhile for surgeon to admit there was something wrong, and that was only after an OCT scan recommended by another doctor (2nd opinion). Eye doctor says 6-8 weeks to get better, but if no improvement seen in a month, will have to do injections. Yikes! that scares me! Sure hope it doesn't come to that.
If you have not been examined by a retinal specialist, make an appointment. I would have lost confidence in this surgeon by now; a simple scan could have concluded this way beforehand. You want a retina doc to be closely following you now for treatment.
Sorry you are going through this. Edema usually resolves but the timeline is different for everyone. I have heard of the injections to bring swelling down at a faster rate. Again, a retinal specialist would know best.
Keep posting updates.
Thank you Lunabug. You called it before the Dr did, that it was macular edema.
He said at last appt, after doing the OCT scan that the optometrist requested, that if it wasn't better in a month, he would refer me to a Retinal Specialist. I am so not wanting to get a needle in my eye! I made it through the cataract surgery with no sedation, just the numbing drops, but I get the serious heebie-jeebies when thinking about a needle coming at my eyeball! I just want to be done with this whole thing. Patience is not my forte'. Was hoping someone would come on here and say, "oh yeah, I had that... it went away in a couple weeks". But sounds like it might take months :(
We're in the same boat. Just diagnosed with CME today after getting NO help from the surgeon or optometrist. I called my retina doc,who was out, but they got my in to see someone else in the office, so now I'm on increased steroid/anti-inflammatories (4x/day) and go back to the retina doc in about a month to see how it's going--may also end up with with injections. I'm actually not too worried about the injections after the cataract surgery. I could see the knife go in on the first eye and it didn't hurt at all, so after that I figure a needle will be easy-peasy.
Don't know if it makes you feel any better, but I had NSAIDs along with the steroids and antibiotics since day 1, and it didn't make a difference.
It's so infuriating to have repeatedly told the doctors that there was a problem, and consistently have them ignore it.
It kinda does help me to ease up a bit on myself for not doing the NSAID drops from the beginning, knowing that it didn't make a difference in your case. I've been kicking myself for not at least trying them. That original one was generic Ketolorac, but I never took it. The Prolensa (NSAID) I'm using now is one drop a day. It's not making a problem, and I've been wishing I would have been prescribed this one from the start.
"It's so infuriating to have repeatedly told the doctors that there was a problem, and consistently have them ignore it." Oh boy, can I identify with this! I even saw in my chart that they wrote "subjective visual disturbance" for one of the times I went in in a panic because my vision had deteriorated so much. It took going for a second opinion from an doctor not affiliated with their practice to get a proper diagnosis so I could begin treatment.
I had just run out of the combined drops from the surgeon for the first eye, so the retina doc prescribed Ketolorac and Prednisone Acetate. A different NSAID than the combo drops and no antibiotic. Both eyes have CME, so I'll be using the combo drops in the 2nd eye at the 4x/day rate.
2 full days on the new drops, and I'm seeing some improvement. Probably up from 0 to a 2 on a scale of 10, with 10 being the excellent vision I had a couple days after surgery. I'm actually surprised (and very pleased) to see improvement so soon. Doing some reading on CME after cataract surgery, and it sounds like it's a lot more prevalent than people know and usually not diagnosed. I saw a paper where the estimate was it occurs in over 40% of cataract surgeries. Reading some of the posts on the forum talking about blurry vision after surgery, I have to wonder if some of the issues blamed on lenses are actually a result of CME that has not been diagnosed. Seems like getting an OCT should be standard procedure for anyone having problems after cataract surgery.
Glad to hear you're seeing some improvement already. For me, it's been slow going, but trend is in the right direction, as far as what I think is coming from the swelling. If I had to guess, I'd say maybe close to half the way back, compared to those first few days when I could see so sharp and clear out of operated eye.
I agree about having the OCT scans done, because the sooner it is treated, the better. I'm wondering if maybe it looks bad for their practice to have a lot of cases of CME, so they lean towards not acknowledging it and hoping it will resolve on its own.
As I get further out from the surgery date, and especially now that the retinal swelling is going down, I'm noticing that my right (unoperated) eye is not working well with the IOL eye. I can tell that my brain is trying different strategies in it's attempts to blend the 2 now-very-different eyes, but coming up short. I'm now thinking that at least some of the blurriness is coming from a bit of double vision. I've had a headache for several days, and my eyes feel like they are "pulling" weird, hard to describe. I only ever used glasses to drive before, I could always see well enough without glasses to walk around the house, and through the grocery store. Now I can't see good enough without my old-old glasses to get around, and my balance is bad all the time, with or without them.
Before surgery, my surgeon said "oh no, there won't be a wall of blur!" when i asked him how far out I'd be able to see if corrected for near vision. But there IS a wall of blur!! I'm focusing about 12" out, and at about 20" out, things are unrecogizable. (Not just guessing about this, I have a measuring tape I'm using to gauge it). I have to have my face right in the computer screen to read what I'm typing. And things are Really Small in operated eye, even with the font zoomed in as much as it will go. At my last appt, the one where I was officially diagnosed with CME, I asked about that, how small everything looks in that eye. He said that would go away as the macular edema resolves, and I breathed a big sigh of relief, thinking it was just that. But it is Not going away as the swelling is going down. It's actually getting worse as that eye heals, and it's starting to dawn on me that that is probably from how myopic I now am. I think he's got me Way more myopic than I needed to be! So much for trusting the surgeon to know what he's doing.
I auto-refracted at -2.25D in the now-operated left eye, at my pre-surgery measurement appointment in June (-2.00D in right eye on that date). I didn't see that at the time, hadn't figured out yet how to access that report in my on-line patient chart. He said back then that I was -2.75 and he would bring it up to -2.50. I legitimately didn't know what my eyeglasses prescription was at that time, because I hadn't been able to get a workable refraction for several years, mostly because of worsening cataracts. He must have been looking at an old prescription instead of the new test results from pre-surgery measurement appointment. I just hadn't been wearing glasses anymore, because I could see better to drive with just my drugstore sunglasses to help with the glare. So I now know that he wasn't even looking at the correct information when he spoke to me about it. I did contact his office the week before the surgery to say I wanted to be closer to -2.00D in that eye, and did not want to risk being more myopic than I already was, for multiple reasons. I don't think he got that message. Based on how well I can see out of that eye through a pair of old glasses that are -3.00D, I'm thinking I'm at least that, if not more myopic, and that the myopia is increasing as the eye heals.
To be honest, I'm getting quite depressed about this, cause... what can I do? Nothing really. Swelling's going down, but vision's getting worse. No way am I having the other eye operated on after the nightmare this one has been.I'm thinking my eyes are at least a diopter apart now, if not more. I already have a brain tumor and struggle with balance, not to mention deaf in one ear. I feel angry about it. He (surgeon) passes me off so nonchalantly, when this is severely impacting my life and ability to function independently. ok, rant over. did feel good to get this out tho.
Before surgery, my surgeon said "oh no, there won't be a wall of blur!" when i asked him how far out I'd be able to see if corrected for near vision. But there IS a wall of blur!! I'm focusing about 12" out, and at about 20" out, things are unrecogizable.
Yeah, that doesn't sound right. My eyes, with monofocal IOLS both set for -2, wound up at -2 and -2.5. I don't have a wall of blur at all. Things farther than about 24" are somewhat blurry, but I can see well enough quite far away, although of course not in crisp detail. I hope that, even though it seems to be going the other way, when everything is truly healed, your vision will have greatly improved.
Thank You Bookwoman.
Do things look really small when you look at them out of your -2.50 eye only? Like need a magnifying glass to see it, small?
No. They look normal-sized, and the same size as my -2 eye.
Thank you for this information. I'm baffled as to why I'm experiencing this. Things even look real tiny now when looking through my glasses. Up until just this last couple days, when looking through Both my eyes together, things looked normal sized. The same as they've always looked before, and the way they still look if I close IOL eye. It was only when looking out of IOL eye by itself, to gauge how much I could see out of that eye, that things looked so small. But now, as macular edema is in the process of clearing up, my unoperated eye (which is my dominant eye, btw) is at times letting the smallness take over. So that when I look through both eyes together, everything is so so small. It feels like my brain is trying out different things, different ways of blending the view. I wish I knew how to train my brain to see only the regular size. Otherwise, I'm gonna have to carry around a magnifying glass in my pocket. Seems so unfair as I sacrificed the possibility for plano vision to not lose my near vision. I can see up close just fine from my -2.00 eye, there is just a bit of ghosting when looking at print because of cataract still there. Cataract is not as bad in that eye as the one was in now operated eye.
If it were me, I'd get a second opinion. Are you located anywhere near a major eye hospital?
If "swelling's going down, but vision's getting worse" and "he (surgeon) passes me off so nonchalantly", I suggest you get a second opinion.
This is exactly the sort of health situation where a reassessment is recommended.
Yes, fortunately, I do live near Casey Eye Institute. Have to go into downtown Portland, OR though, they don't have any satellite clinics in my area. I avoid going anywhere near there in recent times. Also, have to wait months to get in, they have long wait list. It's probably the best place to go though, for a third opinion. I already got a 2nd opinion, at a different clinic that is closer to me, is how I finally got diagnosed with CME. That doctor doesn't take my insurance though, and I would have to pay out of pocket to go back there. Might be worth it, even if I had to take out a bank loan to get treated there. At least I was listened to, and taken seriously.
On the up side... I can tell the macular edema is slowly going away. I can see almost all of the amsler grid lines, though they are still very wavery and distorted. Previously, there was a large washed out donut shape taking up half of it, where the little squares were totally occluded. It seems even better this morning than yesterday morning, though a little worse than when I went to bed last night. From the getgo, it has been getting worse during sleep, and is at it's best later in the afternoon and dinner time.
But the "ceiling fan in the middle of my vision" effect is back, even worse than right after surgery. Shimmering, vibrating, flashing... when I look at lights. Especially when first turning them on in the morning. And when looking at computer screen, like now (I have a MacBook with a retina display). If I leave a brightly lit room and go into a darkened room, there is just a patch there, in center of vision, which slowly fades away over several minutes. This may be entirely normal with an IOL, how would I know? Should be getting these answers from the surgeon that operated on my eye. However, I greatly appreciate people's comments on this forum, as it somewhat relieves my anxiety to know others have experienced these things and not gone blind :)
If I leave a brightly lit room and go into a darkened room, there is just a patch there, in center of vision, which slowly fades away over several minutes. This may be entirely normal with an IOL, how would I know?> . I would say that is not normal with an IOL. I don't see anything like that.
Thank you for letting me know that. I did choose a monofocal IOL (tecnis DCB00), and wasn't expecting artifacts.
It is probable this is coming from your retina. There was one other poster here who was severely myopic and had one eye done - he reported images were about 10% smaller in the operated eye. However, he disappeared and has not posted in sometime. If you are severely nearsighted eg. your IOL power was in the single digits, it is possible the anisekonia is being caused by the IOL. But given the CME, this is a confounding factor. Retinal anisekonia is caused by either contracting or expanding of the retinal tissue. The cells become either compacted or very spaced out, and it causes images to appear smaller (micropsia) or larger (macropsia.) Micropsia is usually more common.
As others have said, you need to go to a retina specialist who is located in a major city or hospital. It is possible you may need more aggressive treatment. Or at the very least, a careful, nuanced evaluation of your case.
Going into the 3rd week of the increased drops, and there actually seems to be some real improvement now. I saw a little improvement after the first couple of days and then took a big step backwards. It's been very, very slow, every day is up and down all day--it's incredibly depressing. You think "it's getting better!" then slide back. This morning I could actually see my face in the mirror again with my right eye rather than just seeing a darker oval, and I can see that there are shingles on the whole roof across the street rather than just in a small area surrounded by blur. Visual acuity still isn't what it was at first, but is slowly, slowly, slowly improving. I am SO glad that I went to see my retina doc--the optometrist I'm seeing is incompetent. He still hasn't done a dilated exam, even though there was a note from the surgeon's office to do so. (He also says that there is NO chance of PCO until about 5 years out. My last optometrist missed the retinopathy until it was quite advanced, and told me the reason I had problems with glare was floaters. So I guess this guy is a step up because he recognized I had cataracts?) Fortunately I'm seeing the retinologist now, so after the next scheduled appointment the optometrist is going to get kicked to the curb. And I'm going to see the retinologist a few days after that appointment, so I figure I'll get a good exam from him. I'm still having issues with glare, but hoping they'll clear up as things continue to improve. I was seeing colors differently between the 2 eyes, but that seems to be improving, although there is still a slight difference.
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Hope you're seeing continued improvement and the magnification affect has gone away.
Thanks for the update Lucy. My internet has been down since Tuesday, just got it back. Glad you are seeing improvement, though slow. It IS frustrating! You think you're going to be seeing Better after cataract surgery, like 98% of people that have it. It's really disappointing when CME happens, and it takes weeks/months for it to clear up. Mine is alot better, but as it is resolving, other issues are taking the front seat of concern.
I had a scheduled appt with eye surgeon on Oct26th. He sent his assistant in there to take detailed notes, as usual. So I spilled my guts about all the things that have been happening, to the assistant, thinking he's going to tell the doctor all this. It was a dilated exam, and they had already done another OCT scan when I first arrived. Doc comes in with a picture of the scan, and shows me that the retinal swelling has gone down a bit. Not all the way, still a couple pockets of fluid in there, but much improved from the Sept28th scan. So he's not going to refer me to retina specialist because there has been some improvement. He did a quick look inside my eyeball, took all of maybe 2 minutes, then started to head out without comment. I asked about the issue with everything looking so small in that eye, told him how I've been using a magnifying glass to see up close because of how tiny things are. He suggested I get readers for up close! This made me instantly angry, and I said to him... "Dr. X, I didn't sacrifice my chance for plano, good clear distance vision, to have to use readers!". He just left, walked out, appt over. Didn't even address other important concerns I'd shared with the assistant. I now doubt he even reads that stuff.
As I told the assistant, when the retinal edema started to subside, the flashing light in the center of my vision became more prominent. It looks like I'm looking at a ceiling fan flickering, shimmering, moving. It's really bad in the mornings when I first wake up, gets better in the afternoons, though I see the effect to some degree throughout the day. I also see many more of the little clear worm-like things moving rapidly around when I look at the sky, but also sometimes when reading. Floaters I think. My eyes are Not working together very well. It's hard to go from reading, or looking at computer screen, to looking around room. I now Have to wear my glasses to see to drive, or even go outside, and when I take them off, it's very uncomfortable. I can feel my eyes pulling. IOL eye is so blurry even a short way out, I can't comfortably walk around now without my glasses, but I still do inside my home. The one's I've been wearing (my old old ones), are -3.00D in IOL eye, and I'm seeing too good out of them. Unoperated eye is -2.00D still. I'm pretty sure I'm now a -3.00 in operated eye... Really Disappointing!! I didn't need to be that myopic in that eye. I do better just closing that eye, when walking around in the house. Can't walk around in the grocery store with one eye closed tho, so must wear glasses. Have to take them off to read labels, and have my face right up in it to see it. Other shoppers must think I'm nuts, because covid concerns, but I can't read the ingredients otherwise. While I can see up close somewhat with my unoperated -2.00 eye, that one still has the cataract and I have ghosting/dbl vision to a degree when looking through that eye alone. More of a problem when trying to read with that eye, can see bigger writing, but not the smaller stuff.
Shortly after that last appt, I woke up one morning with full-on vertigo that lasted for several minutes. I've been having headaches daily, and slight feelings of nausea as well. Ceiling fan effect in center of vision is not getting any better. Balance issues are Way worse than before the eye surgery. Unclear as to why I'm getting the vertigo, and can't be sure it's not related to the acoustic neuroma I have. PCP doesn't think I need to pursue it with AN doc, he's inclined to think it is from my eyes being too far apart, and issue should be addressed by eye surgeon.
I decided to do exactly what you're doing with your eye surgeon, sever ties after next appt (Nov22nd). I made an appt with the 2nd opinion doc that diagnosed the retinal swelling when my own eye surgeon overlooked it (and who knows what else he has overlooked). She doesn't take my insurance, so I'll have to pay out of pocket, but she is closer and easier to get to, and also I was able to get an appt there for Nov8th. She is going to do both a medical exam, and a proper refraction so I can get new glasses. She's an optometrist, not an ophthalmologist, but spends much more time doing the dilated exam than my current eye surgeon. She also listens, and answers questions. I think my eye surgeon that I trusted to operate on my eyes, is now in damage control mode, because he knows he messed up.