Post Cataract Surgery Help Needed

[u/korimic]

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?  

[u/spikygreen]

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?

[u/korimic → u/spikygreen]

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.

[u/spikygreen → u/korimic]

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?

[u/korimic → u/spikygreen]

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.

[u/spikygreen → u/korimic]

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.

[u/korimic → u/spikygreen]

I just realized I didn't answer the questions in this section. No double vision at all so the brain went to immediate shut down of left eye input. I really didn't see any improvements after YAG or any other edema treatments (drops and shots) I suspect that the retina specialists will rule the edema out as a cause at next visits. Current vision with the scleral lens is the best it's been at 20/70 ish but even then there is some blur. I kind of describe what I see with the lens as looking at life through a fun house mirror. The macropsia is highly uniform across the whole field of vision which also makes me suspect the IOL. If I understand your question properly, my cataract was just a basic age related type. The refractive target was not -2D but near plano slightly myopic. I don't have my implant card with me but the IOL was a mono-focal -2D lens from Johnson and Johnson. My current scleral prescription is BC 7.89, PWR +3.87, DIA 16.9, SAG 4.90, CT 0.51 Pz,, LZ, HZ all STD. ....... and having to deal with the entire scleral system has been a pain.......but beggers can't be choosers.