Upcoming Surgery for Congenital Cataracts at 36
Posted , 11 users are following.
Hi all,
I've been a lurker for a few weeks, but wanted to start my own thread as a place to share my experience with cataracts, especially as I was diagnosed young and will be having cataract surgery at a young age.
I was first diagnosed with congenital cataracts at age 5, and have had them ever since. They've always been fairly mild - for a long time my vision was 20/30-20/35, about the same acuity for near, intermediate and distance. I also have a slight astigmatism and a slight lazy eye (acuity based, not misalignment based). I’ve been prescribed glasses for the astigmatism in the past, but the correction was so mild I never used them because they didn’t really “fix anything” (the astigmatism sure, but not the cataracts).
I moved to Boston when I was 29 and found a new ophthalmologist. She recognized my cataracts right away (she is a cataract specialist), and said I’d likely need surgery someday but better to hold off until it was needed. Starting this summer (I’m now 35), I started to notice lots of glare and halos from light - I was commuting to work on the subway one day and realized the lights in the subway station seemed awfully hazy, but it wasn’t a very humid day. After a few days of anxious waiting, I scheduled a check-in with my ophthalmologist and she confirmed my cataracts were getting worse and based on how my vision was deteriorating, I’d likely need surgery within a year.
She gave me the option of scheduling the surgery now, or scheduling a check in in six months time to see where I was at. Went home and talked it over with my wife, and then called my father, who had cataract surgery in his late 50s, and my dad put it to me this way - He said “it’s the best thing I ever did for my vision. I saw better the day after my surgery then I had seen in years before that. If I was you, I wouldn’t put off something you’re going to have to do eventually anyways. Why keep putting up with bad vision when you could get it over with? “
So after a few days of consideration, I emailed my ophthalmologist and said let’s get this train started. I started doing research on lens choices and what went into the surgery. I went in last week for my A scan and a consult with the doc on lens choices. Since I’ve never really worn glasses, and I’m not particularly far or nearsighted, it’s definitely a bit of tossup in terms of which direction to go. My ophthalmologist definitely seems conservative about the side effects of some of the premium lenses, and has talked up monofocal’s, but she also hasn’t talked me out of any of the premium lenses either. In fact after talking about my lifestyle, the fact that my wife and I are very active (run 2-3 days a week, lift weights 3-4 days a week, hike in the summer on weekends, snowboard in the winter, etc.) she suggested considering the new PanOptix trifocals, or the older ReSTOR multifocals. She had just met the Alcan rep that week about the PanOptix and said given their popularity in Europe and Canada, they may be a good fit.
So at this stage, I need to go back for more eye measurements in three weeks (immersion, and a few others) as I apparently have a “short eye” and she wants to nail the refraction calculations. I’m leaning heavily towards the PanOptix as my first choice, then the Symfony as my second, before considering a few others if there’s some reason those are not a good fit. We may or may not go Toric on he lenses depending on the measurements on my astigmatism.
My hope is, given that I’m on the younger side of the average cataract patient, that I’ll take pretty well to any choice that I make in terms of new lenses. I’ve never thought of my vision is being that bad until just recently, now that I’m getting lots of glare at night and in dark situations and from bright lights even during the daytime. I am trying to be pragmatic, especially given the slight astigmatism and lazy eye, that I might need glasses or contacts for some distances after I’m done. But my surgery will be at the Massachusetts Eye and Ear hospital, which is very good, and my ophthalmologist does a few hundred cataract surgeries a year, so I’m feeling hopeful about my odds.
Currently my first surgery is scheduled for Nov 18 (a few days before my 36th birthday), so I’m hoping my doc can deliver me a good birthday present. We’ll need to finalize my lens choice and which eye goes first, but we’ll get that started in the weeks ahead.
I’ll provide updates as I go along as I haven’t found too many stories like mine about quite young patients with congenital cataracts, and I’d like to document my experience a bit for anyone who might come looking for a similar story.
0 likes, 51 replies
Boston_Oat
Posted
It's been a while since I've posted an update, so wanted to share how things are going.
I'm now almost 3 months post-op on my LE and 4 months on the RE. Nothing major has changed with my vision since my last update. I do have a small floating in my RE peripheral vision from my capsulectomy to treat the PCO that presented in my RE, but it's rarely there (looks like an eyelash in my peripheral vision), so I've mostly learned to ignore it.
Regarding Glasses After Surgery
So the largest update I have is on eyewear - glasses & contacts. Let's start with glasses.
I've gotten 2 pairs of progressives from my optometrist - the first is a standard set of progressives, like what many people here are getting, and the second pair is a set of computer progressives.
I got used to the standard progressives pretty fast - just an hour or two. It's weird to "look where you want to see", but I think most people will get used to it quickly. Glasses definitely help adjust for my farsighted RE and correct the astigmatism in my LE (mostly existed before my surgery), and return my near vision. I have an add of +2.5 on the progressives, so I can see most small things pretty darn well. The one objection I have on the regular progressives is the near corridor is fairly narrow - about the width of a cellphone or a page of a paperback book when held about 18" away. This is fine for walking around & day to day activities, but not my favorite for extended reading, or reading large format books like a school textbook (which I'm doing on the side for part-time grad school).
This is where the other glasses are super handy - the computer glasses (by Hoya) are 55% intermediate, 40% near, with about 5% distance on the top. They're great for using at work where I'm in front of a computer 8+ hours a day. They're perfect in meetings, as I can still see across a conference room without issue, and I can walk around the office with them just fine. Walking outside to grab a coffee is a bit weird in the wide open, as the near is just at the top of the lens, so I'm usually looking through the top or just looking over them. Not the best thing for walking around outside but it's workable. They're also great reading glasses as they're a digital progressive and the transition from intermediate to near is almost the whole width of the lens, so reading a textbook or similar activities means I can see the whole page in focus at any one time.
I haven't gotten prescription sunglasses, which means I'm often juggling between my sunnies and my other glasses as I'm out & about, which I do find frustrating. I could probably solve that with prescription sunnies (BTW - RayBan accepts vision insurance in the US through their website, check it out, even for non-prescription sunglasses), but haven't gotten a pair yet.
Incidentally, I got both of my sets of lenses through my doctor's office's optical shop, though I did re-use a pair of Warby Parker frames for my everyday progressives - the frames are all of $99, which is cheaper than the $250-$400 the optical shop's frames go for. I did get another pair of frames from them for the computer glasses, since I ordered everything in one go as opposed to going and getting another set of frames from Warby then bringing them in.
So regarding the sunglasses & glass juggling part, that's where I'm now trying out contacts.
On Contacts
I had my first fitting for contacts last week, and got my sample fit pairs yesterday. Here's the approach we're using.
My RE has minimal astigmatism, so we're using a CooperVision multi-focal in that eye. It corrects for my farsightedness (+1D sphere), and gets me a +2.5 add for near. This is a concentric type multi-focal optic, meaning that your get your near/far adjustment as your iris dilates (it dilates as you look at things near/far, as well as with lighting conditions).
For my LE, my remaining astigmatism is about +1D, so it is noticeable without correction. CooperVision does make a toric multi-focal, but my optometrist says he's had < 50% luck fitting those with clients, so he's starting me on a toric multi-focal set for distance, giving me a sort of "multi-focal monovision" approach, where we pair distance correction in my LE with a multi-focal in my RE.
So far, my experience with the contacts has been really positive. I definitely feel more "free" without my glasses (though both pairs are in my backpack when I go to work). My vision mostly feels like how I remember it before my cataract surgery, but better! Before my surgery, I was in the 20/40 range, plus haziness from the cataracts (in the last few months). With the contacts I'm reading 20/25+. The multi-focal gives me back most of my near vision, and at an intermediate distance using my computer at work, most everything at computer distance and beyond is nice and sharp. Things closer than my computer (like a cellphone) are readable - my brain is still sorting out the sharp image from the multi-focal and the de-focused image from my LE, but it's very workable and I think will only improve with time. Before my surgery, one of my eyes was fairly near-sighted and I tended to favor one eye anyways, so this is similar (but the eyes are flipped).
I'll be curious to see how my eyes continue to adapt to the contacts. I'd also be curious to see if my optometrist will let me take a shot at a toric multi-focal (though he says they're more expensive), or perhaps a multi-focal without the astigmatic correction, and see how I manage without the astigmatism correction (I had an astigmatism before).
The contacts definitely give me more options though, as I could also layer reading or other glasses on top. The contacts are also awesome for when I'm being active - going to the gym, running, snowboarding, hiking, etc. - things where I'm hot & sweaty and don't want to deal with glasses, having them fall off, sweating onto them, etc.
On getting in contacts, I had tried contacts 20+ years ago as a teenager and hated them. They fitted me with RGPs with a minor astigmatism correction and the pain of getting them in did not outweigh the minor benefits of the correction. However these lenses make a big difference for me, and I was able to get them in within 30 minutes of training at the optometrists, and about 15 minutes this morning (second day) solo. Strangely, the multi-focal is super soft & "floppier" than the toric contact, so it's super easy to fold it over if it hits your lashes or eyelid when putting it in. The toric being a bit stiffer goes in really easily as it's a bit more rigid.
Overall
So overall, I'm pretty pleased with the outcome of my surgery so far. Some people are lucky enough to walk away with mono-focal IOLs and not need glasses, but that wasn't the case for me and that's okay. The glasses are great and provide me excellent vision. The contacts are fantastic for freeing me from needing glasses in active scenarios, and so far are really comfortable in my day to day at the office as well.
RonAKA Boston_Oat
Posted
Thank you for the detailed update. A question and a couple of comments:
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I assume you only had the amblyopia in one eye? If so, which one? It seems you are getting really good vision in both eyes now. My wife has amblyopia in one eye, and they don't even try to correct it. She just gets a plano lens for that eye.
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I'm 70 and have worn progressives for longer than I can remember. I also do a lot of computer work before I retired, and still do a lot for pleasure. I find that standard progressives do just fine for the intermediate computer work. I do however get the digital HD (or whatever them call them) from Costco, and find they give you a lot wider field of view compared to cheap progressives. Costco now have Kirkland lenses but admit they do not give as wide a field of vision for reading as the premium ones do. I go to an optometrist for my regular check ups and to get a prescription. But, I would never buy my glasses from him, as they want up to $1000 a pair for essentially the same glasses you can get at Costco for $450 (Canadian). I would expect the premium ones at Costco in the US would be in the $300 a pair range.
I also get my contacts at Costco. Have never tried the multifocal contacts, but I do have toric ones. My last set were set up for monovision with a -1.25 D under correction in my non dominant eye. I am still debating on whether or not to do monovision with the IOLs. It is so much more permanent than doing it with contacts. If you want to try monovision and are prepared to do it with contacts now, I don't see any reason why you could not try it. They could correct for astigmatism and your spherical error, as well as give you monovision. Costco will typically give you some different lenses to try for free, to see what you like.
Boston_Oat RonAKA
Posted
Hi RonAka - yes, I had amblyopia in my RE it usually tested about 10 points lower than me LE. My doctor was targeting plano in both eyes and was pleased that i came out as close to 20/20 as I did in my RE, She said the trick with amblyopia is the brain adaptation since its a partly mental / optical cortex issue. The amblyopia was the reason my surgeon recommended monofocals vs multifocal IOLs.
Thanks for the comments on the progressives. I find for me at intermediate distance the standard progressives are a bit narrow. Pretty sure these are the digital type, but maybe not? Lots of places to get progressives nowadays, so might try Costco or similar for next pair.
Re: Monovision, might be something I try with contacts, though the multifocals are working well. On IOLs, I might skew towards IOLs set for plano and adjust optics with contacts / glasses. Thats ultimately what made me go for plano monofocal IOLs - less complicated to adjust vision afterwards
Julissa Boston_Oat
Posted
Hi,
I have a suggestion on sunglasses that I've used for about 2 or 3 years now that I wish I had known about a long time ago. Those prescription sunglasses were always so expensive, as were my regular glasses over the years. Then I found what they call 'fit-overs' and they don't only come in huge sizes, there are all kinds of sizes, shades, etc. The brand I use is called Cocoons and they have a web site too where you can order if you can't find them at optical places. Of course nowadays you might have to get things like that online (?).
Imagine saving the money for that while you just put on these sunglasses over whichever pair of glasses you have on. Very convenient. I think I paid about 50.00 for mine.
Julissa
Boston_Oat
Edited
So it has been about 18 months since i had my surgery, and we've even had a worldwide pandemic since then, so I thought I'd offer an update.
Generally my eyes have been great My vision has stayed very stable in the last 18 months, so that has been good.
Prior to pandemic, I'd started the fitting process for contacts but had that delayed by the pandemic (was never able to get the final appointment for the last check-up to get the Rx dispensed). Fortunately I had so many sample lenses i was able to space them our during the pandemic and still had some on hand by the end. The original plan was a modified monovision setup with a toric in one eye (for distance) and a multi-focal in the other. Trying this in our brightly lit office prior to pandemic seemed okay, but the single multi-focal was not as good in low light (working from home, evening wear, restaurants once that happened again). These were with Clariti dailies.
When I finally went back to the optometrist, I saw a different doctor and asked to try being fitted for the new CooperVision Biofinity monthly lenses that are toric + multifocal. I'm still in my sample pair, but they are excellent. They provide a very natural range of vision and are well balanced in mixed / transient lighting in a way the monovision with a single multi-focal was not. Phone / reading, computer and distance are all quite clear, and I can read 20/20 distance and 20/16 (almost 20/12) near. They're not quite as good visually as my progressives (standard or computer), but I just feel very natural wearing them. I hadn't worn glasses prior to my cataract surgery, and juggling multiple pairs and sunglasses has nor felt natural since my surgery. I filled my script today and cant wait for my first shipment to come in a few weeks!
Everything else has been great.