Hi-new to this forum - severe photophobia after cataract surgery. I had severe dry eye before the surgery. I had my surgery at Bascom Palmer since I live in Florida. Horrible enough since during the pandemic. and put off cataract surgery much longer than should have due to dying father. I did NOT have any light sensitivity before the surgery. You might think oh the cataracts blocked the sensitivity BUT that was not the case since there wasn't any sensitivity for a decade in Florida and I bicycled every weekend for entire days. With regard to treatment after a lot of medical research in PubMed (where everyone should go for their Covid info), I discovered that the leading eye center for photophobia hands down is the Moran Eye Center in Utah. Its founder coined the phrase dysphotopsia. For those of you unfamiliar with that term , there are two versions: one where you see a black arc on the sides of your eyes after cataract surgery, and the other is seeing shimmering or flickering. I went mad trying to figure out what was going on because after the surgery I could see the edges of the lenses on the sides and bottom when I look up AND my eyes seemed to have flickering on the edges of the lenses. That is in addition to severe photophobia. The surgeon at Bascom was not interested in dealing with there being a problem and his Fellows knew nothing and could not care less. After finally connection with the head of patient care in Miami (who was very helpful although many many months after the surgery) , and seeing two ophthalmologists in my area who saw nothing (after Bascom cancelled my appointment with the surgeon, a depressing step for me) , and no one saw anything, the kind head of cornea at Bascom finally saw that my under eyelids were having tiny spasms that were shaking my eyes and therefore also shaking the implanted lenses and irises. He said it is chicken and egg in terms of what is cuasing all the problems. It is possible that I had the little spasms under my eyes and that my eyes were shaking before trhe cataract surgery but due to the negative dysphotopsia (the way the light enters the edges of the implanted lenses making the edges of the lenses seem visible), I as seeing the shaking. In the meantime, I came upon threads in a patient website in which someone with photophobia mentioned seeing the retired head at the Moran Eye Center, so I looked at research published on photophobia by their physicians, and I learned about the F41 lenses. I am trying two now, but the Axon ones are lighter than the Theraspecs, and probably better because as several people noted, if you make things darker, your eyes may never recover. You can send in your own frames and they will add the lenses. I cannot use wrap around since I need prescription glasses for reading and they distort the prescription. All the other glasses have thin arms since people with migraines are apparently sensitive to weight on their temples. SO, I will get a pair that has arms wide vertically where they join the front of the glasses. Probably the best alternative is to have the optical center at the Moran Eye Center make the glasses with the f41 lenses. Shawn there was super nice to me. You can send in your own glasses with the prescription although you need one measurement taken and provided in addition to it. The doctor I am seeing invented the f41 lenses. Since the glasses work for migraines and blepharospasm, and I don't have migraines, and I do not have the eye closing that is the hallmark of blepharospasm, and do not have the disease that you get in one eye that causes temporary eyelid spasms, the doctor said it is a chicken and egg problem - Is the severe light sensitivity causing irritation of a nerve that is causing the spasms that are shaking my eyes? I am being tested for many things now here in Florida by a neurologist. I likely have essential tremor (it's is a dominant gene, so you only need to inherit it from one parent ad you have a 50/50 chance of getting it - my late father had it and my sister has it - but a neuro ophthalmologist at Bascom said that the part of the brain that causes essential tremor would not cause my eye problem. I will see what the Moran Center doctor says about that. I do not know if my neurologist will do tests to see if I have an optic nerve problem. I will be going to see one of the photophobia experts at the Moran Center. In the meantime, the cornea doctor agreed that I should try anti-inflammatory drops for 3 week (not longer) s to see if it makes a difference. Regarding the dry eye problem , your physicians may not have told you about the following if they do not offer it. Not great that the doctors work this way. Bascom offers serum drops made from your own blood. A phlebotomist is sent to your home to take the blood every three months. In five weeks, the serum drops healed all the "spots" in the center of my cornea. Unlike the medicine given for eye inflammation that burns eyes terribly, the serum drops are soothing since they are kept refrigerated and are only part of your blood that includes growth factors and saline solution. There is a national company that offers them if you are not near a hospital center that can supply them. The doctor orders different percentages - in my case 30% - the rest is saline. Since I have both a lacrimal gland problem (don't make enough/right kind of tears) and MGD, the glands in the under eyelid area do not make enough oil, I also use drops with hyaluronic acid. I tried 6 different drops with other substances that were not great. Again doing research, I found a major European study that said drops with the hyaluronic acid were almost as good as serum drops, but the companies making them were in Germany and did not distribute them in the U.S.. One of the companies told me they have a sister company in Canada and that kind company called and told me a pharmacy that is an approved distributor in Canada (has physical location as well) and that company ships them for a flat $10 fee a couple times a year to me (PS the price you see is quoted in Canadian dollars). The drops are Hylo. they make a patented bottle that enables the drops to stay sterile without preservatives. They also have the individual daily bottles if preferred. There are two levels, one with 2% hyaluronic acid nighttime and the second with 1% that can be used day or night. I have also ordered the ointment (not with hyaluronic acid) to see if it gives me just a little more help at night. Do NOT buy them on Amazon to avoid fakes! The only manufacturer that distributes in the U.S. eyedrops with hyaluronic acid is Oasis, but the company will not disclose how much of the ingredient is in its drops. So , I do ot trust the company. t will be months befofe I see the physicians at Moran and report back. I am not sure if the F41s (they were invented by the physicians at the Moran Center) are helping because of the tint or because I am using the over glasses version and they are blocking light coming in from the sides and top. My cataract surgery (monovision) has not worked out terribly well (I did not need glasses to read before, now I do, and the nighttime driving is still not great when it rains) - but I was told I have PCO in my left eye, the one with the distance lens so once it is fixed with a YAG laser it should be better for nighttime driving - but until I am certain that I will not be replacing the left lens I will not have the procedure (you create a serious problem if you do). So, to the person who has given up - do not do it until you go to the Moran Eye Center. I will not be thrilled to be flying with the pandemic, but I will keep myself safe as possible with an n95 make and goggles. While botox has risks, it the situation continues I will try it. I will hope no mistake is made doing the injections, and whatever side effect I get is reversible once the botox wears off, such as being unable to keep your eyes open easily. It is not great for dry eyes since you blink less often. FYI, like many people with photophobia, it is worst indoors, particularly with florescent lights, less in stores since the lights are high in the ceiling, and also bad with any overhead bright white lights or lamps near my face. If I walk in the early evening, I hardly have a problem at all. Indoors, if I cup my hands around the sides and top of my eyes the problem is better - either because the arcs cannot be seen (which is where I see that light flickering due to seeing the shaking where the arcs are visible or because it kept a lot of light from reaching my eyes. I hope something in this very long note helps someone.

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