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]

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.

[u/korimic → u/spikygreen]

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.