CME after Cataract Surgery
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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.
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Lunabug jettesun
Posted
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.
jettesun Lunabug
Posted
Thank you for this explanation. I was hoping the micropsia Was coming from the macular edema, and would go away. But it seems to be just the way I'm seeing things now, as it's still very much there even after retinal swelling is going down. Swelling still not quite all the way cleared up yet though, so maybe.
While I've been myopic since grade school, my prescription has changed over time. For a while, it was getting worse, then after I stopped wearing contact lens, it started to improve. Last refraction before surgery was -2.00D RE, and -2.25D LE, but my eye surgeon was looking at an old prescription when he decided to correct for -2.50 in first eye (LE), thinking he was bringing it up from -2.75D. I did point this out to him later, but I now don't think he got that message. At any rate, I've only ever been mildly to moderately myopic. As I said, when I wore contacts, my prescriptions were a little more myopic, but even then, most it ever was, was a -4.25D. And that seemed to be an isolated instance, because most of the time they were in the -3.00 something range. Until around 2015, when cataracts were becoming more of an issue, then I got less myopic. So strange how cataracts can actually improve your vision for awhile.
lucy24197 jettesun
Posted
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.
jettesun lucy24197
Edited
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.
lucy24197 jettesun
Posted
Had my followup with the retinologist today. There is definite improvement in the CME, but I still ended up with a shot in my RE, which was the first one done (almost 11 weeks ago.) The prep work for the shot is far worse than the shot itself. They give you several rounds of antiseptic drops and numbing drops, then take a piece of cotton soaked with numbing liquid and pack it in your lower lid where it sits for several minutes making things numb. That was the worst part. It's not that it hurt--it wasn't bad. The tech just had long nasty fingernails with who-knows-what growing underneath them, and had one of those wooden handled cotton swabs she was using to help pack the stuff in my eye. All I could see was fingernails and a wooden stick jabbing at my poor abused eye. The shot itself is very quick and painless ("don't breathe" fast), and the doc put it underneath my iris and hidden by the lid so I don't notice the little bloody blotch left on the sclera unless I really open up and roll my eye around. Everything is blurry now with that eye, so it's really frustrating, but it should clear up in a few days. Still stuck with prednisolone & NSAID drops 4x/day for another month, when I go back and maybe get another shot--in both eyes, depending on how things go. Hoping that things will be back to normal by then and we can do a taper on the drops and no more shots.
jettesun lucy24197
Posted
So sorry to hear you had to get a shot in your first eye. That does Not sound like fun at all! That poor eye! I sure do hope things will be back to normal for you in another month, and no more shots!
I've yet to see a retina specialist for the CME. For my insurance to pay (and they are expensive!), I have to have referral from eye surgeon. At last appt with him in October, he said since swelling was going down, he wanted me to come back in another month (Nov22nd), do another OCT scan, and if isn't completely resolved by then, he will refer to retina specialist. I'm thinking next scan will show it gone, because I can see the whole amsler grid now. No occluded areas anymore at all. There is still a slight amount of curviness to some of the lines, but nothing like the wavery-ness and movement that was there at first. I'm having other issues tho, like my eyes not working together right. Still have the ceiling fan effect in center of vision, mostly in the mornings, but also other times during day when I've been in bright light. Been going in and out of seeing double, especially when changing focus from near to far, or vice-versa, and also when taking off my glasses. The second opinion doctor I've been paying out of pocket, did several tests and says I have exophoria. My IOL eye is just going off to the left side some of the time. Still got the clear-worm-like fast-moving floaters thing going as well, but I only see that when looking at something light and bright, like the sky or shiny white bathroom sink, white page in a book, etc. Image in IOL (left) eye really small still, and scary part of that is that I can tell my dominant right eye (non-operated, still has cataract, eye) is letting IOL eye take over sometimes now, so that everything I see is small. 2nd opinion doctor didn't end up doing a proper refraction at Nov 8th appt, because she said I wasn't ready yet for permanent prescription, but did tell me that I'm at least a -3.00D in operated eye, with enough astigmatism to need correcting. So disappointing!!
I did stop the steroid drops (Durezol, 2x a day), back in middish October ( Against medical opinion, so NOT recommending this), when I started seeing colors very distorted. That issue cleared up a couple days after going off those drops. Because I do so much work with color, that circumstance seriously scared me. I did continue to take the NSaid drops I'd been given, until Nov 1st (so took them for over a month), when I noticed the drops had darkened considerably. Since my depth perception sucks right now, I kept jabbing myself in the eye with the bottle trying to line it up with my eyeball. They tell you over and over again not to let it touch your eye, because risking bacterial infection. When I looked it up online, I kept reading things that convinced me to toss it and get another bottle. I'd been using that bottle for over a month, and a lot of websites say throw it out after 28 days of being opened, and Especially don't use it if it has changed color. After much hassle trying unsuccessfully to contact my eye surgeon's office to ask about it, I contacted pharmacy for refill, they in turn finally got ahold of my drs office, drs office finally called me and said just go ahead and use them, they should be fine (!!). I said I'd already thrown them out. So they did refill the script, and I just picked it up today. Not knowing if I really need it now or not, the CME appears to be going away by itself anyway. But do plan to use until my next appt and OCT scan on Nov22nd, since they did give me a new bottle. It is Prolensa, and is only one drop a day, that lasts for 24 hrs.
Wishing you the best Lucy. We had our initial surgeries only one day apart, and both of us were awake and aware through the whole thing. When I undertook this little adventure, I thought I'd be done with the whole thing by Halloween, both eyes done and all recovered. Little did I know.
lucy24197 jettesun
Posted
Yeah, it's hard to believe this has been dragging on for almost 3 months. I am so ready to be done! It's easy for me to say, but don't be afraid of the shots if you need them. You don't feel it, and you don't see the needle. The doc says "don't breathe" and you're done. The blurriness is going away now, and I think I'm seeing some improvement in my vision since yesterday. When they did my OCT yesterday, my left eye wasn't showing any bump at all, but the retina was flat where it's supposed to have a dip where the macula is. The right eye had the classic little volcano with voids under it at my last appointment. Yesterday there was still a bump, but the voids had filled in. The raised areas were not as high, and a lot of the swelling had gone down, so things are going in the right direction. It's weird--I never saw much in the way of distortions on an Amsler grid, so maybe you'll still see improvement. So sorry to hear that your target was so far off and that you're still having issues with the flashing. That would be devastating.
jettesun
Posted
Update: Had another OCT scan this morning, and CME is officially gone. My retina and macula look back to normal. Very relieved to have that behind me. To recap: Cataract surgery on August 30th, already slight reduction in visual acuity by end of first week (thought it was dry eye). Marked reduction in visual acuity by end of 2nd week. CME diagnosed by second opinion physician on Sept 25th, and officially diagnosed by my eye surgeon on Sept 28th, when he couldn't ignore me anymore and finally did an OCT scan. Fully resolved on Nov 22nd. So took about 2.5 months to go away.
Btw, for the reason that it might help someone else who is as paranoid about putting chemicals into their eye as I am: I didn't use all the eyedrops I was supposed to be using. The steroid drops (Durezol) that I was prescribed After developing CME, I stopped after a couple weeks, because I started to not be able to see colors correctly, and I thought it might be the steroids. Two days after stopping them, my color vision was back to normal. I did use the NSAID (Prolensa) drops for a little over a month, but then they got discolored and I stopped using that bottle. It took me approx a week and a half to get another prescription for them, but after starting them back up, my eye became painful, turned red, and eyelid was swollen. Couldn't get ahold of my eye surgeon's office to have that checked out, so stopped the drops again a couple days later. Before when I had used them, they didn't burn when I put them in, but when I started them back up, they did. The redness and swelling was present the next morning after using them before bed the previous evening, and my eyeball hurt. So it seemed to me that my eye didn't want them in there either. I'm not suggesting at all that anyone else do what I did, only bringing it up because the retinal swelling resolved itself anyway, even with my poor adherence to the recommended eyedrop regimen. I'm comfortable making that decision for myself, especially since I feel like I was treated in a cookie-cutter, production-line like manner from the start of this cataract surgery ordeal. Everyone gets the same spiel, the same routine, with no consideraton for my individual differences/preferences/attributes/and experiences.
The flashing strobe-like effect in the center of my vision is still there, though seems to be not as intense as it was. It"s a lot like looking at a ceiling fan on high speed with a bright light on it. It's much more intense when I wake up in the morning and turn on my bedside light (only 15 watts). Then everything I look at has that flashing light in the middle of it. When I asked the eye surgeon Again to explain what that was, he totally played dumb. I had asked a month ago at last appt and somehow he got out of the room without addressing it that time. Today when pressed, he said he didn't know of anything related to my eye or the surgery that could be causing me to see a flashing light in the center of my vision, and only thing he could think of was that it was probably a "psychological" phenomena, which is what he likes to pin lots of things on. He also flatout lied about my refraction. The assistant did it, and came up with -3.00D in operated eye (other eye is -2.00D). When I asked what it turned out to be, after retinal swelling resolved, he said, uhhh, hmmm, welll... about -2.50, maybe closer to -2.60. Then after he left the room, assistant printed it out for me so I can get new glasses, and it says right on the glasses prescription -3.00D OS, and -2.00D OD. Will definitely Not be going back to that eye surgeon. Huge regret that I trusted him.
Next step for me is going back to 2nd opinion optometrist for vestibular therapy (Dec 6th), to work on ways to help my eyes work together better, as they are. Because I'm Not getting the 2nd eye done! I'd rather live with the cataract than go through another ordeal such as I've just done. Currently, I've got double vision, exophoria, and very poor depth perception, besides the flashing in center of vision. I used to wear glasses only to drive, and was quite happy with that arrangement. But looks like now I'll have to wear them all the time, because this surgery has severely messed up my ability to walk around without them.
lucy24197 jettesun
Posted
So here I am, 15 weeks tomorrow after the first cataract surgery (RE), 9 weeks after the second (LE). Saw my retinologist again today, where first they did an OCT scan. The right (first) eye is showing improvement, although the CME hasn't completely resolved. At least there's a depression where the macula is again, rather than a mini-volcano. My vision has been improving in that eye until just the past several days, when it's been a little off. The left eye is showing more CME than it did a month ago, but it's not as bad as the first eye was. Wasn't surprised by that--vision has deteriorated some. After 15 weeks of steroids, I've developed ocular hypertension in the right eye, so the doc has me stopping the 4x/day prednisolone & keterolac--cold turkey. Not completely comfortable with not doing a taper, but he said it was ok since--rah rah--today it was a shot in both eyes (Avastin). So no more drops. Just hoping there won't be an inflammation rebound. I did see improvement in vision after the first shot, so hoping for the same after this round. I go back in January for possibly another round of Avastin. I can't tell you how envious I am of people who don't have complications with this surgery.
jettesun lucy24197
Posted
So sorry to hear this Lucy. Both eyes. I don't know how you can see to get around. I feel fortunate I only had to deal with it in one eye, that was trouble enough. That's a long time on the steroid drops too. Doesn't sound like they're even working very well to clear the CME either, if it's still increasing in your 2nd eye. I hope the shots work better to clear it up. Maybe in the absence of the drops, your own body defences will be able to work more efficiently to heal your eyes.
lucy24197 jettesun
Edited
I think the drops have actually helped, although I think they've been irritating my cornea lately. The 1st eye is showing a lot of improvement, and the second eye, while it's worse than it was, is not nearly as bad as the first eye got (or even as bad as the first eye still is), so maybe the drops kept things in check. Regardless, I'm ready for this to be DONE. It's interesting how the eyes are reacting differently. I never saw a change on the Amsler grid with either eye. With my first eye, my vision narrowed down to a tunnel with clearest vision in the center. This is opposite what you're supposed to get with CME--the central vision is supposed to be affected, not the peripheral vision. There was also a color shift. That eye had the classic "volcano" on the OCT scan. The volcano is gone and the colors seem better, but there's still a fair amount of swelling. I have a full field of vision with my second eye, but my range of focus has shrunk dramatically. It's my near eye. and it's gone from everything crystal clear in about a 2-3' depth of field range to nothing perfectly clear and best focus in only a 4" range--outside of that things are blurry.Maybe a little color shift, but not as much as the first eye. Very, very frustrating. But--on the positive side, I can see well enough to drive and read again, so it's probably just a matter of being patient.
jettesun lucy24197
Posted
Yes, it is a curious thing how differently our symptoms of CME manifested. I knew the last scan was going to be clear, because the amsler grid had gone back to straight lines. Not only were the lines wavery when I had the swelling, but there was a donut shaped area around the center where I couldn't see anything at all. That area gradually shrunk and went away. Strange that your loss of vision was peripheral, when it's the macula/fovea center area that makes that volcano shape. I had one of those too, on my OCT scan, with big boulders inside (pockets of fluid).
I also had the color changes, and that really freaked me out. Enough that I stopped the Durezol (steroid) drops. Dr said it had nothing to do with it, but couple days after stopping those, my color vision returned to normal. That was enough to convince me that it Did have something to do with it.
I do still have the flashing, but mostly only in the early part of the day. I think my brain is getting used to it. Guess it's just something I will have to learn to live with. Again, Dr. said he hasn't a clue what that is or what's causing it. Doesn't think it has anything to do with the cataract surgery. What?! it has to. I didn't have that before, and it's only in that eye.
As far as focus, I can now see excellently very close up. Writing out my Christmas cards was a pleasure again. That eye ended up at -3.00D. As I've said, it didn't need to be that myopic, and certainly I have lost some intermediate vision I might have had if he had hit the correct target (should have been -2.25D). When I was still checking it, I was focusing about 12" out with that eye, and after about 18-19 inches out, things were just a blur.
But once the retinal swelling went away, my eyes and brain started down the path towards working together to synthesize my new view of the world. It was hard at first as I was seeing double, having headaches, and getting vertigo. 2nd opinion optometrist wrote out an Rx for prism glasses, which I've never had before. I was to put them on immediately upon arising in the morning, and only take them off for shower and bed. That was after I explained to her that my goal all along was not to wear glasses in the house. I did not fill that script, still using my old glasses to drive. Decided to not keep looking out of one eye only, and to not compare eyes anymore, just look at the world binocularly, with both my eyes together, and let my brain figure it out. It was hard at first, but I'm stubborn and committed. As of today, I am seeing much better, and my brain is well on it's way to combining the two views into one homogenous whole. I'm not wearing glasses in the house, only to drive. I can see WAy better to drive than I was seeing before with the cataract, and this is with my Old glasses! Telling you all this to encourage you that when the swelling in your eyes is totally cleared up, hopefully your focus will be where its supposed to be too, and with those cataracts gone, your vision will be so much better. Now that you don't have to do the drops anymore, your corneas can catch a break, and your eyesight can clear on up. Best wishes for a complete recovery very soon for you.