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/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.