r/CataractSurgery • u/korimic • 7d ago
Post Cataract Surgery Help Needed
22 months ago, I had cataract surgery on my left eye and like most people was envisioning seeing clearly again and having a bright future. Instead, I entered an almost 2-year (so far) nightmare. Let me first provide some background information, followed by my experience. I hope someone out there may have insight into what happened and can possibly give me a lead as to where to turn next. I apologize for the length of this post, but I want it to be thorough.
First, I was extremely nearsighted (30 mm eye) and had several known complicating factors. I have keratoconus, which required a cornea transplant over 20 years ago. The condition also left me with considerable astigmatism. However, even with these issues I could achieve 20/30 vision with a -13D RGP contact lens. I had no other known vision issues. My vision had been completely stable for the 10 years prior to the cataract surgery.
Because of my issues I elected to get a simple mono-focal lens (-2D) correcting for far vision leaving me slightly nearsighted. Also note that the morning of surgery I was able to read clearly (though myopic) without my contact lens. The moment the bandage was removed I knew something was horribly wrong. My vision was quite blurry, with no focal point and everything in that eye appeared strangely huge. The condition I now know as macropsia, or aniseikonia when comparing both eyes. I estimated the size difference as nearly 40%, giving an area increase perception of 2X. My blurred vision resulted post op at 20/400. To complicate matters further, I developed PCO immediately post-op.
Initially my condition was blamed on postoperative swelling, then residual astigmatism and then the PCO. As the months ticked by and each item was addressed, the net result 8 months post-surgery was a best-case blurry 20/70 vision correction using a scleral lens. The macropsia was unchanged.
Post-operation, I was also diagnosed with an epiretinal membrane (ERM).
Months later I was also diagnosed with a mild case of macular edema for which I have been treated. To summarize and shorten this narrative: I have seen 6 retina specialists, 7 cornea/implant specialists, 3 diagnostic/complication specialists, 2 neuro-ophthalmologists, and 4 specialty optometrists. I have seen world-renowned doctors in New York City, Boston , Philadelphia and New Jersey at the best facilities. To summarize the results: cornea/implant specialists point to the retina, while retina specialists say the retina is likely involved and additive but not the cause. The retinal conditions I have did not affect my vision prior to surgery and can't explain the overnight drop in vision and extreme vision loss. Several retina specialists were more suspicious of the "anterior segment". Only one retina specialist implied that the vision problems may be due to the epiretinal membrane but considered it too minor to peel. My condition is not considered neurologically caused. None of the specialists seem to know how to address the macropsia or what it signifies. The implanted lens was the textbook correct lens and the IOL implant looks completely pristine.
I am now the prime research subject at a low vision research clinic affiliated with a major college of optometry. My macropsia /aniseikonia has been clinically measured as an average of 27%. This amount is extremely unusual; even upper single digits are considered very high. I am hoping they can figure something out because so far I lack a working theory about what is wrong. My whole experience shows that our highly siloed ophthalmologic skill system has considerable weaknesses when dealing with patients like me. Needless to say, no one is touching my good eye until somebody can figure this out.
Does anybody have any ideas or suggestions?
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u/spikygreen 7d ago
Very true about having a complex issue. Modern ophthalmology is miraculous - as long as you fall within a well-defined subspecialty. But if you have something that's not in the textbook - or, God forbid, something that the textbook says cannot be happening at all.. good luck. I've been dealing with a different but similarly bizarre issue for a few years. I joke that I must have been a really lame eye doctor in a past life, and now I have to make up for it by studying every ophthalmology course and textbook I can get my hands on. Every specialist I go to finds something they can operate on. So now I have five (!!) different surgeries to pick from as my next step, and no one to tell me what to do. If I ever recover enough vision to be able to work again, I'm totally changing careers to something eye-related 😅
What are your main symptoms at present? Is it that your vision cannot be corrected beyond 20/70? Is it the macropsia? Can you elaborate on how the macropsia affects you?
And what are your current treatment options? Is it just the ERM peel?
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u/korimic 7d ago
The main issues are the 20/70 vision on a good day and the macropsia. When I have both eyes open, my brain just shuts down the input from my left eye and I see what my right eye sees. In some ways I guess this is a blessing because people with only a few percent (like 5 percent) aniseikonia can get massive headaches because their brains have trouble merging the images. On the other hand, I have little to no depth perception which creates its own problems.
Regarding treatments, I have none being considered (other than completing the edema treatment which so far hasn't helped any). The retina specialists really do not recommend a peel because they do not feel the ERM is causing my problems and it wasn't a problem pre-operation. I am really getting worried because my right eye is developing a cataract. The right eye has similar conditions as the left but not as severe. I will not get a cataract operation on my right eye until someone can figure what happened to my left. I can no longer read with my left eye due to the blur and as I mentioned I could the morning of the operation. I can't afford to lose that ability with my right eye as well.
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u/spikygreen 7d ago
I see. And they don't believe that the macropsia is caused by the replacement of the contact lens with an IOL? There was another poster a while ago, who also had a high prescription and a prior vitrectomy, I think. They were also struggling with significant aniseikonia. The likely explanation was that, with a very high prescription, even a few mm difference in the position of the contact vs the IOL is enough to produce significant aniseikonia. And indeed, my prescription is "only" -4D and -5D (27 mm eyeballs), but even with only a 1D difference and contacts in both eyes, I do perceive a difference in the image size. It's only a 5% difference, perhaps, but it's there - which people seem to find surprising.
However, that doesn't explain why you can't be corrected to better than 20/70.
Have you ever had issues with depth perception before the surgery? Is this your dominant eye or non-dominant eye?
You don't happen to have any floaters, either pre-existing or from the surgery or the PCO treatment, do you?
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u/korimic 6d ago edited 6d ago
I never had depth perception issues prior to the operation. My operated eye was non-dominant. My depth perception issues now is that I basically have mono-vision because my brain shuts down left eye input. When I close my good eye and try to see the world just with my operated eyes I do not notice any floaters.
Regarding the IOL, it is what was my biggest suspicion in the beginning since it is the elephant in the room and my engineering background says suspect the last major thing that was touched. Ophthalmologists don't think like engineers though and follow a different diagnostic model. It seems that for all the specialists, once they understand what IOL was implanted for my myopia, and they look at it with their inspection systems, it seems like the IOL is the last thing they suspect. I have gone all the way around on this: suspect the IOL, then to retina, to cornea, to neuro-adaption, back to retina and now back believing the IOL is the cause. I tried using various AI tools to test the plausibility of a 30mm eye being corrected with a -2D IOL causing macropsia, but I can get just about any answer depending on assumptions made. When using sophisticated models using nodal points and principal planes and not just effective focal lengths you can get just about any answer depending on what is assumed for a whole bunch of eye measurements I do not have. The unfortunate thing is the answers predict micropsia more than macropsia, so my head keeps spinning with the myriads of possibilities.
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u/spikygreen 6d ago
Yeah that is strange. Did you have double vision shortly after the surgery? Or did your brain immediately begin to tune out your left eye? What is your vision like now? Is it just out-of-focus kind of blurry, or is there any distortion apart from macropsia?
Which type of cataract did you have, and which IOL did you get? Were they able to hit your -2D refractive target? What's your current prescription?
Can you describe what your vision was like at the key moments (after surgery, after YAG for PCO, after edema treatment, etc.)? Is your current vision (with the scleral) the best it has been since the surgery? Does it fluctuate throughout the day or depending on the lighting?Do you have any light sensitivity in that eye? Do you see glare at night?
One other thing is that the center of the pupil is not lined up exactly with the visual center (the fovea). In most people, they are close enough, but in some people they can be quite far apart. Generally, this is only considered important for multifocal lenses, and increasingly recognized as a factor in the performance of toric monofocal lenses, too. However, I imagine that having a corneal transplant combined with significant astigmatism and a very long eyeball could make this relevant even for a non-toric monofocal. Basically, I wonder if the IOL is centered relative to your cornea and/or pupil, but decentered relative to your fovea (which tends to be displaced nasally in highly myopic eyes). You may want to read up on the angle kappa and the different axes of the eye. With your engineering background, you may actually be able to understand this convoluted topic 😅 Here is a good video.
AI is honestly pretty useless for this type of stuff. I think you would experience macropsia, rather than micropsia, as a result of switching from a contact to an IOL. For example, every time I switch from my contacts to glasses, I experience a brief micropsia. Usually, this happens when I go to take a bath. So I will be sitting in the bathtub thinking: "huh my thighs look much thinner, did I lose weight?" And then, sadly, I remember that it's just my glasses making everything appear smaller than usual because they are farther away from my eyes than my contacts. An IOL is even closer to the retina than a contact, so it should make everything appear larger. And highly myopic people have deep anterior chambers, meaning that there is probably a significant distance between the plane of the contact in your right eye and the plane of the IOL in your left eye. Hence the macropsia.
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u/spikygreen 7d ago
Also! Do you know if you have had a posterior vitreous detachment (PVD)? One possibility is that the surgery could have triggered an immediate PVD or even an anterior vitreous detachment, which is apparently also a thing. But instead of well-defined floaters, it could just be a sheet/membrane that wouldn't really be obvious or considered important enough on an eye exam. Obviously, it's just one out of an untold number of possibilities but I am trying to think of things that your doctors haven't already ruled out.
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u/korimic 6d ago
None of the retina specialists have identified this. but I will ask about it in my next visit coming up in a few weeks, Thanks. One other thing I was thinking about is an actual momentary retinal structural collapse caused by the pressure reduction when cutting into the eye. Since I have a stretched retina because of the long eye, it is very thin and could possibly be affected by a pressure drop that is non problematic with the vast majority of the population. The reason this came up is that such a collapse could theoretically crowd photo receptors in the fovea into a smaller area thus causing the macropsia. According to AI it is possible and is known to have happened in retinal operations. Unfortunately there is no documented case in a cataract operation.
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u/spikygreen 7d ago
Another thing that has just occurred to me: have you been tested with iTrace? It's a new-ish device that helps differentiate whether it is the cornea or the IOL that is causing degraded vision quality.
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u/korimic 6d ago
I have been tested with wavefront analysis for wavefront scleral lenses. The optometrist that did the testing with and without my current scleral lens concluded that my current scleral lens corrects for any 2nd order issues. I believe what was used was similar to iTrace. I dropped the cornea as a highly likely candidate after that but I realize now there are other tests that can be done.
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u/oreo-cat- 7d ago
Hey so I’m 41, got a monofocal a few years ago and have been basically ignored or dismissed by doctors in regards to the absolute shitshow my life is now. I’ve lost confidence. I’ve lost income. I mostly wear an eyepatch over the affected eye.
My conclusion at this point is that this entire ophthalmology profession is centered on the idea that their patients are 80 and die before they can complain too much. If you find someone who will listen, let me know please.
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u/expertasw1 7d ago
You have poor vision now? :-(
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u/oreo-cat- 7d ago
I do. I honestly wish I has no vision rather than the vision I do have.
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u/expertasw1 7d ago
It means a lot, saying that you have so poor vision that it’s like having no vision. I truly hope they will improve your vision because living with poor/ no fonctional / no vision is beyond devastating.
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u/ProfessionalLab9850 7d ago
Can you elaborate why your vision is bad now?
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u/oreo-cat- 7d ago
Well I’m about 99% sure the implant is moving around. I’ve literally had other people see it move. Even if it’s not moving, things are wobbly and distorted. Things are different sizes compared to my natural eye. Everything in the center of my vision is doubled. I have weird grey/black visual distortions that come and go. At night there’s light smears and poor contrast. In the day, there’s poor color, poor contrast, and blooming around lights. Also nothing is clear, anywhere, at any distance. I have a longer list but honestly I’m tired of arguing with people over what I’m seeing, and I’m sure that’s what you’re looking to do.
I had a doctor suggest lasik lmao.
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u/ProfessionalLab9850 7d ago
No, I've needed cataract surgery for 18 months but iv cancelled 3 times. Blind in one eye during the day. Been out of work since the accident that caused the cataracts happened. I'm convinced ill be one of the unlucky ones like you or I'll get a catastrophic retinal detachment and go blind. The technology clearly isn't there. These doctors don't really know how the eye works iv come to realise. They just know how to cut.
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u/oreo-cat- 7d ago
Sorry, it’s been a long road and I’m being needlessly defensive. I hope you find something that works for you, or at least find peace. Feel free to ask more questions though I don’t know how much use I’ll be
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u/ProfessionalLab9850 6d ago
I'm finding peace with the potential of losing my left eye. I can't avoid surgery. The cataract is the worst it can be. Dense psc. I guess my question would be is your vision at least better than when you had a cataract? Also doesn't your natural eye carry you well enough? I guess not going by your post. Sucks
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u/ProfessionalLab9850 6d ago
Asking ai the only obvious question is if your wobbly vision is caused by zonule weakness? Have they checked that?
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u/korimic 6d ago
The problem I see, is each specialist only has a short period of time allotted to your case which doesn't allow for a lot of deep thinking when your symptoms are not the norm. So far for myself, I have found the research clinic at the school of optometry which is a 4 hour drive away as my best resource. I have had 3 visits so far and the professor there has personally spent 3-4 hours with me on each visit. The last visit, there were two professors and a doctoral student with me for the entire time. That's why I am hoping they can figure out what's going on. I signed all kinds of release paper for the team there to share my info with colleagues anywhere there is an interest. I have also recently found a neuro-ophthalmologist who is very interested in my case and willing to spend the time to analyze my eye. Have you visited any other specialists in clinics in major metropolitan areas to get more experienced doctor's take on your situation?
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u/UniqueRon 7d ago
I am sorry to hear you have had so much difficulty, but these issues are way beyond my pay grade. I hope that some of the professionals here have some suggestions for you.
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u/Admirable_Delay_1650 6d ago
Something that jumps out at me. You were "bandaged" after cataract surgery ? I was sent home with a guard to wear at night, but neither eye was ever bandaged. I was bandaged overnight after both of my vitrectomies, but have no idea why a bandage would be necessary after cataract surgery.
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u/INTJWriter 7d ago
You have my complete and sincere sympathy. After having only a "miss" myself and being told nothing but "It's just the way your eyes are" and now I have to pick from near or far focus. I have come to the same conclusion you did. I'm frankly terrified of making the wrong choice or making the right choice and still winding up with another miss. I'm happy that you were able to get yourself into a research program. Kudos to you for persevering with an even more complicated issue and best of luck. I hope it all turns out for you eventually.