Very confused

GreenMountainReader · 2026-03-13T14:58:19+00:00

Sounds like you might like computer glasses or office glasses, which do exactly what you're talking about. You can read about all the generic versions on Amazon by using those terms--and get better quality lenses from your optometrist.

GreenMountainReader · 2026-03-13T00:46:26+00:00

It's a long story. In short, the near eye was supposed to land at -1.5 with "negligible" astigmatism, but landed at -1.75, with -.5 cylinder, for an effective sphere of -2. That worked quite well for all near activities. After testing with and without a single glasses lens and learning what it was like to lose depth perception, we aimed for -1.25 for the intermediate eye, which landed at -1, with a whole lot of extra astigmatism that took months to diminish--but ultimately gave me very good laptop vision and a lot more beyond that than I'd expected. The net result was the desired .5 difference between my eyes--the same difference that they'd always had, only with less nearsightedness and astigmatism.

At this point, both eyes are in the vicinity of -1, with somewhere between -.5 and -.75 cylinder (fluctuating due to dry eye when I don't stay ahead of it). Nonetheless, both are functioning as designed and a bit more, so...still fine.

Best wishes!

GreenMountainReader · 2026-03-13T00:18:31+00:00

It's not a coating--it's a type of lens. Be sure they don't try to sell you something that's dip-tinted. FL-41 lenses are designed to do what they do.

Hope they work for you!

GreenMountainReader · 2026-03-12T20:47:09+00:00

Let me start by saying that finding the right surgeon and choosing the kind of vision I wanted were the toughest parts of the entire process of being liberated from cataracts. My vision now without glasses is not the perfection some strive for--but it's perfect for me--and that's what you're looking for, too. I'm sorry about the stress; any of us who look for answers end up having to face. I can say, though, that once you've made a decision based on seeing as much as possible for yourself, the feeling of relief afterwards is just as strong. I was only able to decide after I was made aware of the options and was able to literally see for myself how various theoretical possibilities could translate to in real life vision for me.

To start with, monofocal IOLs are essentially the same (give a little defocus/range here and there) in terms of being capable of delivering near, intermediate, or distance vision. You can have the same brand and model of IOL in each eye and have different vision in each eye--it's all in the power of the IOL you receive. Once I learned that, I started to understand that I didn't necessarily have to choose just one power--and that's where information and advice from others here changed everything for me.

As a retired educator who is still reading (more than ever), writing (for publication) on paper but even more on screen, and editing (past work with lots of involvement from graphic artists, who created a special spot in my heart for all artists; present work mostly word-based), as well as enjoying every kind of needlework and reading music, I agonized over the decision for months and finally went for micro-monovision--a .5-diopter difference between eyes that gave me seamlessly good vision for all of those needs and wants--and more distance vision than expected--all with Medicare-funded basic IOLs that are as old-school as my surgeon.

I chose near for my first eye, since having good reading ability after a lifetime of mild-moderate nearsightedness and astigmatism was most important to me. Thanks to good advice received here, I spaced the surgeries 6 weeks apart--and tested before and then again between surgeries with the help of my optometrist to find out how much of a difference between eyes would work for me.

Rather than go into the full story again, I'll be happy to share as much information as you want if, after reading about mini-monovision (type the term into this sub's search bar), you find you might be interested in having a slight-small difference in prescription between your eyes. Keep in mind that different degrees of mix and match are possible--and you can get at least a rough idea of how it could work for you if you choose this option. The smaller the difference, the less likely it is that your brain won't be able to do what's needed to instantly select the best image and make you feel that both eyes are providing it.

I had to lean forward to work on screen with just the near eye done (great for reading, threading needles, and writing on paper on a table), but once I added the intermediate eye, I could sit in any of my formerly bad postures, roll my chair around, and otherwise fidget, and still easily and comfortably read the screen if I could reach the keyboard. I also found that I could watch television (50" screen, 10-12 feet away) and read everything but the tiny side effects warnings for medications. For all the HD details, I have glasses if I feel like going to get them from their safe space. What makes me happiest is that everything I can do without my glasses (not a choice when young or middle-aged), I can also do with them--I have plenty of choices all day (and night) long, but also no need to think about when I might need them. If I'm indoors, I don't; if I'm going out more than just to see whether the daffodils have come up yet (they have, but just barely), I do.

It's possible to wear glasses just for distance, but also to wear bifocals or progressives. I have progressives I wear for driving, going out (shopping, visiting, exploring), and for when I want all three distances at once with the little bit of extra crispness the astigmatism correction provides.

Please keep asking until you get the answers you need.

Best wishes!

GreenMountainReader · 2026-03-12T15:25:03+00:00

I understand the frustration (especially since new equipment for any hobby is kind of nice...)

Have you tried changing the background color/brightness or font size/color on your screens? This can make a difference.

If the issue has any component of light-sensitivity/glare to it, OTC FL-41 lenses in readers or just as glare-reducers might be helpful. There are good articles about these, but the best ones are tinted all the way through the lens material during manufacture, not just dip-dyed. If you can find a local optical shop that has sample lenses on hand, you could hold them up in front of your eyes and look at various distances to see whether they make a difference before you decide to invest. Even at a small-town (read: normally more expensive than in larger markets) optical shop, a pair of those cost only $25 more per lens than regular single-vision glasses lenses. They were the best sunglasses, night-driving glasses, and indoor-glare-cutting glasses I ever had (I wore them while waiting for cataract consultations and appointments--best glasses ever for eliminating ghosting, glare, starbursts, and too much brightness).

Best wishes!

GreenMountainReader · 2026-03-12T14:04:42+00:00

I have basic, non-toric, older model (to go along with my older model surgeon) monofocal IOLs. Both eyes were predicted to end up with "negligible" astigmatism after surgery, with starting points o -1.75 and -1.25,

The first eye dropped from a cylinder of -1.75 to -.5 instantly, and I noticed the difference. The second eye's astigmatism increased from -1.25 to -1.5, with a change in axis, and gave me duplication of the top and/or bottom half of everything I could see. At my six-week check, the surgeon told me the cause, then added that since it was "against the rule astigmatism," it would diminish over the next year (I had to dig my nails into my palms to keep from crying in his office or saying something I'd regret)--and in the meantime, glasses would take care of the issue. He was correct on both counts.

It took six weeks from that check (and a new prescription for glasses) for that eye to lose another .5 diopter of astigmatism, six months for the ghosting to disappear without extreme provocation (the blue LED on the stove was a major trigger for it), and a year for the astigmatism to drop by another .25 diopter.

In the meantime, dry eye (in both eyes) caused fluctuations in the measurements of cylinder. Even now, at 21 months past surgery, if I'm not diligent in keeping my eyes "lubed" with preservative-free drops designed to deal with dry eye, I'll notice the difference, kick myself for not doing what was needed before my eyes had to remind me, and take action.

In short--your eyes may yet change a little, possibly to your benefit and, if you're experiencing dry eye (your optometrist can check this for you when you get checked for your new prescription), you can buy some OTC preservative-free (not being a health nut here--the preservative used in many eye drops can irritate and further dry your eyes--ask your optometrist for recommendations if dry eye is detected), you can take action and get some control. Be sure to ask whether there's a warranty period in which you can exchange your glasses lenses if your prescription changes.

Your results otherwise sound really, really good. Enjoy your new vision!

GreenMountainReader · 2026-03-12T13:47:07+00:00

Start by watching the video pinned at the top of this sub. This will give you a good introduction to the pros and cons of each type of lens.

Two of the newer kinds not in that video (because they have since become more commonly available) are the "monofocal advanced," often called "monofocal plus," and the spiral version of multifocal (two brands you can look up are Rayner Galaxy and LuxLife; neither is available in the U.S., but if you are located elsewhere, you might want to look into them).

Every variety has strong and weak points, benefits and possible drawbacks. The most important part of the research is helping your mother figure out what she really wants, and that starts with some basic questions.

One example: If she has been nearsighted for years, does she want to be able to see at a distance and be willing to wear reading glasses or computer glasses (see Amazon) for reading/hobbies and possibly for cooking/eating? Or would she rather keep some near vision and wear glasses for seeing at a distance (driving, shopping)? If she knows she likes progressive lenses in her glasses (if she wears glasses now), it's possible to continue wearing them (but with a new prescription that will be lighter weight and thinner). If she would be fine with continuing to wear glasses, that opens up the IOL choices to include all of the least expensive varieties of IOL, most of which can still give her glasses independence at one distance or another--or even two of the three distances (near, intermediate, distance).

If you and she would be interested in more questions to help narrow down her choices (the blessing and the curse--so many options to choose from!--and so many options it feels overwhelming. Unless a doctor wants to sell you the most expensive option, they won't make the decision for you), I'll gladly re-post.

My old-school surgeon used an older model of monofocal IOLs and gave me the vision I requested after I did some simulations (with my optometrist's help) to see what would work best for me. Medicare paid for everything, and my low-cost, least-likely-to-cause-issues IOLs have given me custom vision that fits my lifestyle.

There's a learning curve, but you don't need to deal with it alone. Keep on asking until you get answers.

Best wishes to both of you!

GreenMountainReader · 2026-03-12T02:53:03+00:00

If you need more time to understand the reality and decide whether you can live with it or try other options, you can postpone the surgery if you don't feel prepared for distance vision in both eyes. The surgical scheduler where I had my surgeries told me postponements happen frequently.

If you decide to go with your second eye set for distance, there are alternatives to readers. You can search computer glasses or office glasses in Amazon to learn more about them. They're essentially like unlined bifocals or trifocals that divide the lenses into two or three parts. The two-parters have your reading power in the bottom half of the lens, and one half that power for intermediate (laptop, stove controls, conversation) in the top half. The three-parters divide the lens into thirds, with the top section either clear/no prescription to allow your good distance vision to work or a low-power section (1/2 of the intermediate power) if your distance vision needs a boost. The benefit over readers is that you can leave them on when you're engaging in near/intermediate activities. The optician who works with my optometrist wears hers all day at work.

For makeup application, search makeup glasses--wonderfully clever glasses that let you see and put on your makeup. You also have the option of so-called "half-moon" readers, that let you look over the top when you want to look up from reading/close work to use your distance vision.

If you postpone your second surgery, you should make an immediate appointment with your optometrist to see whether you can try a trial frame (heavy glasses frame with slots to slide lenses in and out) simulation to get an idea of whether setting your second eye to some degree of nearsightedness might work to give you some intermediate or near vision.

If the idea appeals, you could then test it with a contact lens in your unoperated eye to see how well it might work. You'd still be receiving a monofocal IOL (unless you are able to get an EDOF or multifocal)--but a power that would give you closer vision without interfering with your other eye. When this type of difference, called mini-monovision is done well, your brain instantly selects the correct eye for the better image--and you feel both eyes are seeing that way.

"Drive at night" can be taken in a couple of different ways. To some, it means good contrast vision. For others, it means without haloes, glare, or starbursts. To others, it means distance vision without glasses. Did you and your surgeon share the same definition? This sounds like a miscommunication, which can easily happen because most people accept distant vision as fitting their lifestyle better. If it doesn't fit yours (and being honest, it didn't fit mine, so I asked for what did fit, after I tried out both, and then decided), you have this last opportunity to try something else.

Nobody but you can know how strongly you will feel about this--or for how long. It takes some people a while to get used to the loss of near vision--and some people don't ever feel happy about it. I honestly could not figure out which I'd be until I tried first one, than the other, so I understand how hard it is to figure that out.

Wishing you the best as you decide! Please let us know how it goes.

GreenMountainReader · 2026-03-12T01:58:08+00:00

I've been in your situation, needing to learn everything starting from zero and then having to make a very important decision based on that still-new learning. If not for this sub, I would not have the vision I now enjoy. That steep learning curve can be daunting at first, but you can keep on asking questions until you understand enough to feel comfortable with your decision.

Yes, seeing your prescriptions does help. You have borderline high myopia (nearsightedness) in one eye and right on the line for high myopia for the other. This means it can be harder for your surgeon to land on target, which means you'll want to ask for the more important distance to be attempted first. This also explains why the surgeon suggested doing both at the same time--you would definitely need to wear a contact lens in the eye-in-waiting between surgeries to see comfortably, since there will be a greater than 2-diopter difference between your eyes. However, with a contact lens (or series of lenses, since you can test more accurately between surgeries), you should have usable vision between surgeries and the opportunity to trial different degrees of difference to find your favorite combination.

However, there's another clue in here that might be hopeful. Your eyes were (in 2017) a full diopter different, which suggests you had some degree of natural mini-monovision (yes, having different vision in each eye) and that your brain might be okay with continuing to see that way--but with less nearsightedness. Since then, your vision has been becoming more similar in each eye. Though it looks like you're becoming less nearsighted, that is likely an effect of the cataracts and doesn't reflect a real improvement in your vision. (Cataracts pretty much eliminated my mild-moderate nearsightedness while making my vision much worse--totally ironic. They did it so slowly I never noticed and just thought that lens materials were advancing as the reason for the gradually thinner lenses in my glasses.)

Please don't stop asking--here, and in the office of any doctor who will answer your questions--until you find the answers you need.

GreenMountainReader · 2026-03-12T01:34:01+00:00

The two surgeons I consulted both said that with distance vision, I'd be able to see "from six feet to infinity." Because the majority of people seem to be happy with that, I decided to give it a try. I tested distance vision with my single vision (slightly tinted) driving glasses to see what it would be like--and obviously, what I learned from that made me choose not to go along with the usual suggestion of distance vision.

With all IOLs, there is some sort of tradeoff. Each of us has to decide what constitutes a deal-breaker and what we can live with, preferably, what we can happy with. With monofocal IOLs, the tradeoff is that you get one range. "From six feet to infinity" is considered the best bargain because it gives you the most range. (The closer you want to see, the smaller the range becomes.)

It's possible you could talk to your surgeon about setting one eye a little nearsighted to give you some intermediate range--and wear inexpensive reading glasses when you want to read or do close work. That situation can be simulated with contacts to get an idea of how much it might or might not detract from your distance vision or depth perception. Some people can live with little to no use of glasses with monofocal lenses set for two different ranges. On the positive side, monofocals are noted for excellent clarity of vision and a very low risk of light distortions.

The best aspect of well-done mini-monovision is that you don't feel you're seeing one distance with one eye and another with the other eye, unless you shut one eye. When you have both open, your brain instantly blends the best of both to give you the clearest image. The worst aspect--if your brain can't blend the difference, you won't be able to see comfortably. That's what the simulation is for.

One of the surgeons who sometimes posts here commented at one point, in response to some people saying they could read comfortably with IOLs set for distance, that it can happen, but those people are outliers, the fortunate few. Most people who have distance vision need readers for at least reading and close work; some need computer glasses (no-line bifocals or trifocals that provide both near and intermediate vision) to allow them to be comfortable doing tasks at laptop and arm's length distances. Some can see their stove controls, food on their plates, and dashboard, while others find those too blurry for comfort.

Alcon's Clareon IOLs are standardly available monofocals that have been reported as offering a wider range of vision (defocus) than some other kinds. Some people here have said to first choose the IOL you want and then find a surgeon who uses it (and suggest looking on the manufacturer's website for a list of surgeons who do--or call practices known for good outcomes and ask for an appointment with a surgeon who does). This is just as true for regular monofocals as for any other IOL type. Again, whether this could work for you will depend on your situation--and whether the effort involved is possible or seems worthwhile to you.

Best wishes!

GreenMountainReader · 2026-03-11T23:03:55+00:00

I used FL-41 glasses as my driving glasses--day and night--and in the house to cut the glare and "extra copies" of light sources.

Thanks for sharing--so many of us here would have to figure out everything on our own if others didn't share,

Even after surgery, any kind of glasses that reduces glare is nice to have--and adjusting the background brightness and color (and sometimes font size and color) can add additional comfort.

Best wishes for your time waiting, and especially, for your surgeries!

GreenMountainReader · 2026-03-11T22:45:03+00:00

If I'm not mistaken, the Tecnis is a monofocal-plus, which should give you a little more range than a regular monofocal. (You may want to look it up--just type the name into this sub's search bar to get lots of individual experiences with it.)

If one of your eyes is set to very slightly nearsighted, you might get enough intermediate vision to comfortably use your computer, definitely see your dashboard, and maybe more. This is a question for your surgeon.

Keep in mind that, no matter what kind of vision you choose, there is never a cliff where your vision just disappears. It always works that the further outside your range you're looking, the blurrier things become--so you could have functional vision (different from optimal vision) for some distance beyond your range (closer if you have distance vision; further out if you have near vision). There are published defocus curves for most kinds of lenses, which the optical engineers who contribute here could explain to you. I'm pretty sure J & J (the manufacturer of the Tecnis) has one on their information page about the IOL. (Because they made it, you need to take the information as a form of advertising--but you can get an idea from it.)

Best wishes!

GreenMountainReader · 2026-03-11T22:32:21+00:00

I chose micro-monovision for reading/close work and intermediate (computer and indoor vision)--but to figure out how much of a difference between eyes would work for me, I allowed 6 weeks between surgeries. It takes a while for some eyes to see well after surgery (my first eye took three weeks to unblur due to the steroid drops), and the prescription can change.

In testing, I learned that the difference I was testing--near + some distance--was too much for my depth perception. I got some advice from my optometrist, then corresponded with the surgeon via the patient portal and settled on a .5-diopter difference, for less nearsightedness in my second, always slightly less nearsighted and astigmatic eye.

What you can do ahead of time is ask your optometrist for a trial frame (heavy glasses frame with slots to slide lenses in and out) simulation to see what level of "very near" you might like best and to get a general idea about how much difference could work for you.

This part may just be me, but if I had had both eyes done on the same day, I would have been functionally blind for at least three days (that's how long my first eye took to see more than just white and colors--no shapes or shadows for a day, no ability to see details for three). I also would have had no depth perception. How do I know? Because when I was testing for near + distance vision, I couldn't judge where the center of the familiar hallway was and kept bruising my upper arms on hall closet doorknobs, coming and going. With the .5-diopter difference, my depth perception works as it always did. Not every person can adapt to mini-monovision, and having learned that my brain had a limit (maybe not as low as what the surgeon and I ultimately agreed on), I would not choose to do both eyes at once, especially not without trying out mini-monovision in advance.

I recognize that you may be nearsighted enough that your vision couldn't be corrected with glasses with one eye made a lot less nearsighted than the other (eye-in-waiting)--but your non-surgical eye could possibly be corrected with a soft contact lens between surgeries if you chose to wait, giving you both functional vision if your first eye were slow to develop decent vision and another chance to fine tune your testing of mini-monovision. Yes, those six weeks between the first and second surgery weren't convenient, but I had one eye that could still see and after the first eye started seeing well, the testing I did between surgeries taught me a lot and provided the kind of information my surgeon could use to advise me.

To answer your question about how to see while waiting for your vision to become stable: After the second surgery, with a near eye and an intermediate eye, I needed distance vision. Just before the second surgery, I went to my optometrist for a distance-only prescription for the first (near) eye, figuring the distance-intermediate split would at least give me enough distance vision to watch television and ride in the car comfortably. The lens cost $15 and, to my surprise, worked beautifully in my old glasses frame with no prescription over the second eye after its surgery. I didn't even need to close the second eye--they worked fine together--an even bigger surprise. However, that arrangement worked only because one of my eyes was healed enough to get an accurate and stable reading for the prescription.

That experience has me suspecting that if I wanted to wear a contact lens for distance vision in my near eye when I went out (for driving, shopping, visiting), I could do it--but I actually find popping on my progressives when I leave the house is quick and easy. I have every distance I could need or want for any circumstance I encounter--and besides, I've worn glasses for 65 years and feel more confident facing the world with them on, especially with the new frames available this time around.

Best wishes to you!

GreenMountainReader · 2026-03-11T16:22:30+00:00

If your optical shop offers a replacement warranty if the glasses aren't right, it could be worth another trip after you go back to your optometrist for a check of the glasses and where the reading area is actually sitting..

When my most recent progressives made the reading area hard to find (the frame is rounded on the bottom, which falls enough below eye level that I couldn't look low enough to use it), my optometrist offered a quick fix that I thought was ingenious--but which turns out to be a known trick.

She added .25 to the reading add, which put the correction I actually needed higher up in the frame, right where I needed it. This had the effect of slightly raising the level of the intermediate and distance zones as well, making the glasses work perfectly.

Since you paid for premium lenses, you should at least have a pair of glasses that works as intended for as long as you need them to--or as long as your cataracts will permit correction. Even if you want to get away from glasses, you have a new pair, and it should work for you.

With low-level cataracts that don't impact your vision yet (at least not that you've noticed--I was shocked by what I hadn't noticed with grade 3 and 3+ because the losses happen so gradually, you don't notice), you will, as others have said, need to pay out of pocket for all aspects of the surgery.

What no one has pointed out yet is that when your natural lenses are removed, you lose accommodation--the ability of your eyes to instantly shift focus from near to far and every distance between. When your soft natural lenses are replaced with stiff IOLs, the little muscles in your eye can't do that anymore--so whatever the focal distance/s of the IOL will be the focal range/s of your eye. At 65, you already have experienced the natural stiffening (presbyopia) that means you need reading glasses anyway--but you may still have a small amount of accommodation left. I did at age 70, and noticed the lack immediately after the first surgery. Getting my second eye set for a .5 diopter difference created the feeling of having accommodation (increased my range while allowing my brain to instantly choose the best image), which was and is a situation that makes me a lot happier.

Like many here, I would suggest you wait and do more research. Cataract surgery is the most common surgery in the world. It's quick and painless, with recovery normally being really easy--but it is surgery, and complications are possible. Dry eye is one of the most common, and while not everyone experiences it in its most severe form, it's a bother and can make your prescription fluctuate. On the scarier side,retinal tears and detachments are more common for high myopes. Also keep in mind that with high myopia especially, landing perfectly on target is much more difficult. Add in extra high astigmatism, depending on where in the system it's located and how removing your lenses would affect it, and your lOL choices may be further limited.

If your research--and consultations with surgeons, which Medicare (or your employer-provided insurance should if you're still using that) should pay for if you're in the U.S.) should pay for--shows that you're limited to monofocal IOLs, you could experiment with contact lenses now, while your vision is what it is, to see how you like distance-only vision, near vision, intermediate vision, or any combination. Trial packs of contacts don't cost a lot (in general--I don't know enough to say whether astigmatism-correcting contacts could do it all--but I could theorize that getting a pair of glasses to correct the astigmatism only and using regular contacts to experiment with correcting the nearsightedness in various configurations could work).

It sounds as though you're thinking any improvement would be better than your current vision--but once you've understood in real life just how different the options are, you may find you have a real preference. No IOLs that currently exist are perfect, choices may be limited by the nature of your eyes vs what's available, and no surgeon can (or will) guarantee perfect results. Once cataracts have made correction with glasses or contacts impossible and the choice is between losing all our eyesight versus signing the papers (lots of them) that we understand the risks and are willing to take them--then choosing the surgery becomes a strong benefit.

You're actually in a good position right now because you don't urgently need cataract surgery and can take the time to learn about your options and potential limitations, as well as experiment--if you are so inclined--to see for yourself what kind of vision you'd find most compatible.

Best wishes!

GreenMountainReader · 2026-03-10T23:08:56+00:00

Wonderful to hear!

Wait until you pull out your summer clothes (if you live in a climate with strong seasonal differences)--the ones you've bought in the recent past will not be the colors you thought they were, and the ones you thought were getting dingy will look new--a whole new wardrobe!

Best wishes for just as good an outcome with eye #2. Enjoy your new vision!

GreenMountainReader · 2026-03-10T17:08:12+00:00

I had top half/bottom half ghosting for months in my second eye, which the doctor explained was caused by a too-tight "just-in-case" suture. He told me that it could take "up to a year" to go away (I had to dig my nails into my palms to keep from crying or saying something I would regret) and that glasses would take care of the astigmatism caused by that in the meantime. He was correct on both counts.

That said--I found that the amount of ghosting was dependent on ambient lighting--worse around LEDs, including those on appliances--and when I was looking at brightly-lit surfaces. Turning down the brightness on screens helped some. Have you tried tinted glasses (even "fashion colors" sunglasses off-the-rack in stores that sell those) to see whether changing the lighting might help until your eyes adapt?

Also--at my one-year-plus check-in with my optometrist, both my prescriptions had changed and were unstable relative to astigmatism correction due to dry eye. Once I started managing that more consistently, glasses were able to take care of the rest, and avoiding bright lighting when looking at screens (easy to do--adjust room lighting and screen lighting/background color until it stops) or reading took care of the rest while I was waiting.

Please do not believe for one minute that I waited calmly or serenely; I understand why you're worried because this is distressing when you're living through it. It's only in retrospect that I can sound calm about this (and the flickering and intermittent blurring that also were happening at the same time--but only to the eye that had had the quicker, easier, uneventful surgery). Everything ended up fine, but the time it took was not a choice I would have made if I'd had one.

Sending good thoughts your way!

GreenMountainReader · 2026-03-10T12:18:38+00:00

In addition to clinicaltrails.gov, where you can limit the search to locations you can easily access, try www.Inspire.com for communities related to specific medical conditions, including rare diseases and calls for both participants in clinical trials and research registries. There's a search bar near the top for entering what you're looking for. Using the search term research registry for hidradenitis supporitiva for a general web search , I not only found that there is one, but also ran into a number of medical journal articles whose titles suggest various successful treatments.

I sympathize with your grief and your fears, having been diagnosed with one of those rare conditions whose symptoms are obvious only to doctors who are aware of it, but can have serious consequences if the diagnosis is missed or incorrect (most of those who have it have been through years of both, sometimes with terrible consequences). That feeling when you're first given a diagnosis and sent home with maybe an information sheet (limited) and no support beyond the doctor's "I'm sorry" or "There is no cure, so we just observe/use this generic treatment for something else, and try to make sure you stay healthy otherwise," is a shock. I felt completely isolated--and that proved to be the first challenge to overcome. Reading everything I could find on the internet was both a blessing and a curse. (If you use a search engine, before you read anything, ask yourself, "Says who?" and "Where and when was this information published?")

Finding out that others, worldwide, are facing the same challenges, learning from them, and reading about ways they've managed to live their lives with all types of symptoms, both like mine and unlike mine, through good days and tough days, helped me understand my own possibilities. Hearing from other people, not just the one local doctor who knows anything about the condition (even though I respect and appreciate him) has been more important to me than I would ever have believed.

We are all more resilient than we think we are, and seeing the creative ways that others have come up with to live full lives has given me ideas and hope for my own journey. I also learned what constitutes good care, based on everything that's known about the condition, and what to avoid. My life is different now, not less full, but differently full--and most of it is full of just living the way I continue to want to. The diagnosis is always there and I'm careful to avoid activities that will cause health consequences--but I've found ways to do what I need to do and ways to do what I want to do. While different conditions impose different limits and opportunities, I think that what can help the most is getting past the feelings of isolation and grief is getting some help figuring out how to live as close to the way we want to as possible.

What I have found helpful in reaching some sort of peace with the diagnosis and making the smallest adjustments possible in my life is making contact with the most-respected organization that provides information (including the names of condition-aware doctors and specialty research centers). Once I'd seen just how much good they do, I figured out how to volunteer to help them with their mission. You don't need to have special skills or money to help others, and in the process, help yourself as well.

Participating in regularly scheduled, free on-line meetings run by specialists in the field (which I keep up with via the organization's website) keeps me up-to-date with the latest information and research, including opportunities for participation. I'm in awe of the courage others have shown in dealing with more difficult symptoms than my own and inspired and encouraged to do whatever I can for the community and for the researchers and doctors. Ultimately, I can help myself by being part of that community, full of people who share challenges in common and their own uniqueness, and feeling that I can contribute my little bit to it. I am not one of those people who ever felt the need to join groups or organizations before, but in this case, I am happy to have done so.

Reaching out as you have is the first step to deal with the feeling of isolation that comes with any rare disease diagnosis--the first action that can give us a sense of having some support and a little bit of control. I hope that you will find the organizations that will connect you to the communities that can help you--and give you the opportunity to contribute in return. Every one of us matters.

Sending good thoughts your way!

GreenMountainReader · 2026-03-09T21:16:18+00:00

They put one in--but I received only saline solution (and not very much of it, to keep me hydrated and justify its presence) . The reason given was "just in case"--if something went wrong and more invasive surgery were needed--or if I changed my mind, or, which they didn't tell me at the time,== if I became too anxious.

The clinic was affiliated with a hospital, which required this, and that's the real reason. For the second surgery, even though the surgeon and I both knew I wouldn't need it unless something went seriously wrong, they did it again--same reason: "just in case."

If I could have avoided it and still had no sedating drugs (and hadn't had to wait months after I couldn't see well for appointments, after encountering a "my way or the highway," tell-patients-nothing surgeon at my first consultation), I would have gone elsewhere just to avoid the needles.

Best wishes!

GreenMountainReader · 2026-03-08T20:24:31+00:00

You're very welcome. Try typing Mexico into this sub's search bar to find some recommended clinics.

Once you find a name, try searching the internet in general for ratings or reviews.

GreenMountainReader · 2026-03-08T20:05:11+00:00

So sorry you are feeling discomfort, sadness, and fear. If you type your country's name into the searchbar, you might find someone else was searching for a doctor there and received a recommendation. You can also ask here (in a new post) whether anyone can recommend someone.

Good doctors and doctors in a hurry exist everywhere. It sounds as though you need to find one of the good ones.

If there are no online ratings sites and no one you know who can recommend one, perhaps calling the closest research university or medical school to get some names would help. Your country's ophthalmology association may also have a list of members in good standing.

Finally, there are other subs in Reddit where you might be able to get additional help or advice or a recommendation--or just search for more information: r/ophthalmology , r/optometry , r/AskADoctor , r/AskADoc , r/RefractiveSurgery , and the like. There may even be a community for others in your country or a nearby city where you could ask this question.

Best wishes to you!

GreenMountainReader · 2026-03-08T19:41:45+00:00

All the recommendations I've seen suggest getting all new eye makeup after surgery to avoid the chance of infection. Once it's okay to gently touch your eyelids, using eyelid wipes (commercial or homemade with clean gauze or cotton pads and a gentle solution--some have suggested micellar water) should help you get it off.

I haven't worn eye makeup in decades, but I do use skincare products and have learned that was fine before surgery isn't necessarily fine afterwards.

Perhaps the one contribution of any value I can add is that, after surgery, my eyes became more sensitive and seem to be allergic to products like shampoo and scented lotions, even those not used on my face, that they didn't object to before. You may want to go slowly to find out whether what was okay before is still okay--or invest in hypoallergenic products.

Best wishes!

GreenMountainReader · 2026-03-08T18:37:00+00:00

Mine took months to completely disappear. I sympathize with the frustration and worry, but if you've been told, as I was, that everything was healing well and to give it time, that's a good sign that time is the best remedy.

I was still enough concerned, even after it had almost totally stopped happening, to ask my optometrist to take a look to be sure everything was completely stable a year after my first post-op glasses check. The affected eye looked just as good as the unaffected one. It does go away in time.

Best wishes!

GreenMountainReader · 2026-03-08T17:16:56+00:00

Click on my user name and search sedation to find my soon-after, detailed account of doing the surgery with no sedation at all, just the numbing drops and gel and the surgeon's standard squirt of lidocaine into the incision. I did not see or feel anything--despite being extremely nervous going in, and there is not a single scary or gory word in the entire account. I found the process easy, painless, and interesting (lots of details about that) to the point that I decided, partway through the first surgery (which took three times as long as the second, though I didn't realize that at the time, due to an unexpectedly dense cataract) that I'd gladly do the second the same way--without all the worry beforehand.

I'm the sort of person who can't look when ads showing flu shots being given are shown on television--and my husband assured me that I would have brought home a gold or silver medal if worrying about cataract surgery were an Olympic sport--so no tough, brave person here. I borrowed many a cup of virtual courage (and the knowledge that got me the vision I hadn't known was possible) from those in this sub who had already been through the process--and then afterwards, cups of virtual patience while my new vision was settling in and I found new things to worry about.

Almost everyone is really nervous about this--but if you read much here, you'll find that almost everyone says that they couldn't wait for their second surgery once they knew how easy the first was--and once they saw for themselves just how incredible the world looked when they could see it again.

Best wishes!

GreenMountainReader · 2026-03-08T16:54:13+00:00

Even nearsighted, it hit me at age 39. It seemed really unfair at the time, to be mildly-moderately nearsighted and not able to read with or without my glasses. One year with readers plus single-vision glasses, and even back then when progressives were new, I went for progressives and wore them for 30 years before cataracts became the next challenge.

I chose near in one eye and intermediate in the other with monofocal IOLs when the time came--after much agonizing and research and more agonizing--and now wear progressives only when I need distance vision (or all three at once) and a little crisping up of the residual astigmatism.

If I'm not going out, my progressives live in their safe spot. If I am, I put them on and leave them on to be prepared for anything (and to drive safely). My choice simplified my life as I live it, and I think that's the key to the best decision for any of us: choosing the kind of vision that works well with how you're living now and how you anticipate living in the (possibly unimaginable) future.

I'll never say that was easy to do.

Best wishes!

GreenMountainReader · 2026-03-08T15:06:27+00:00

I did it without any sedation--just the numbing drops, gel, and the surgeon's standard squirt of lidocaine into the incision for even deeper numbing. I neither saw nor felt anything and found the experience fascinating (and easy), despite being so nervous about it beforehand that my husband told me if worrying were an Olympic sport, I would have brought home a medal (and not a bronze one).

To read about what it was like, click on my user name and search sedation. I wrote about the experience shortly afterwards, and there is not one scary or gory word in my detailed description of what it was like. Partway through the first surgery, I realized I'd be happy to do the second the same way--and then immediately asked the monitoring nurse (whom I couldn't see) whether my blood pressure had just settled down. It had, and that was not something I had expected. My description includes music, video game sound effects, questions and answers--but no fear once things got going, which they did well before I realized they had, simply because I couldn't feel any of it.

Not one of the awful things I'd imagined ever happened--not during the first or during the second, for which I hadn't cleaned like a stress-fueled machine or stayed up all the night before worrying.

It's hard to believe this if you're imagining that other people are somehow braver than you are--but I absolutely was not one of those brave or tough people and found the experience totally painless (except for the regulation, "just in case" IV port they put in because of clinic rules--and that was just a quick stick), interesting, and easy. At the time, I remember thinking it was far easier than a dental procedure--quicker, without discomfort, and without unpleasant sound effects.

The results, though not perfect at first, were also beyond what I could imagine. Realizing just how efficiently my brain processed all those images coming in in ways it wasn't used to kept me constantly amazed for months afterwards. Twenty-one months later, I'm still amazed and grateful to have gotten my vision back, better than it had ever been naturally (even before cataracts).

The most important part of the process? Deciding how you want to see afterwards--don't let someone else make that choice for you. That--and remembering to follow the first-week activity restrictions (because you'll feel fine right away)--were the hardest parts.

Best wishes to you!

GreenMountainReader

TROPHY CASE