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
So tomorrow is surgery day. I'm a but anxious but after the good support and stories of people here and from family & friends, I'm ready. My cataracts have continued to degrade, and my vision is getting glare-ier, so lets rip the bandaid off and do this thing.
After discussion with my surgeon, I'm going for the Tecnis lenses. We're going to do my dominant eye first ans target it for distance. Then depending on how much intermediate I get, we'll adjust my other eye for a bit of mini-monovision. My next surgery is in December, so i have time to see how my eye settles in.
Wish me luck!
Boston_Oat
Posted
Surgery complete! We dis my RE today, targeted for distance. All went well at Mass Eye and Ear, fantastic nursing and surgical staff.
The only complication was a slight tear in my capsular bag (which my ophthamologist says is common and happens in about 1/3 of congenital cataract patients like myself it did necessitate a on the fly lens swap to a an Alcon Acrysoft MA60AC lens, which can be implanted further forward in the eye (will ask for a few more details at my 1 day post op tomorrow).
They did have to do a bit of extra work cleaning up my eye and positioning the IOL (which required extra numbing drops and a second round of anasthetic), but pretty good vision once done On the drive home, through the clear patch, even fully dilated, I feel like i have the best distance vision in this eye that I've ever had. I felt like the Alcon had a bit of a blue cast relative to my natural lens in my LE. It feels less noticable now that ots early evening under artificial light (still a color difference, less blue). Will see how that settles out.
Deb03 Boston_Oat
Posted
Glad you are doing well. The lens is a 3 piece which is what is needed if the IOL is placed in the sulcus. I don't think that lens has a yellow tint, so compared to a yellowish cataract lens, colors will probably look a little different. Not sure if it is a big deal to you, but may be something to consider for your next eye if you want the lenses to be the same (clear tint vs yellow tint).
soks Boston_Oat
Posted
Your congenital cataracts were probably posterior polar cataracts which are associated with weak capsule. Capsular tear is a pretty serious complication during cataract surgery. That they were ready with the lens that had to be put further forward in the sulcus is excellent and expected of Harvard physicians. That you got excellent vision is fantastic news. On your post op ask them if there was vitreous loss and if you should see a retina specialist just to be safe. Agree with Deb about using same lens in both eyes for consistency. The 3-piece was used because it is easier to fix to the iris i believe.
Guest Boston_Oat
Posted
Wow, I can see now I was lucky, I too had congenital cataract and I had uncomplicated surgeries.
But good to hear your surgery went well, it is really fantastic to see the world without cataracts, I am 4 month in, and I am still blown away by the colors and the contrast I have now 😃
W-H Guest
Posted
Related article. Great coffee/tea read!
Google-
Christopher Kent, Senior Editor
Published 11 July 2018
The IOL in the Sulcus: When, Why & How
When you need to place a lens in the sulcus, it pays to be prepared—and to know what not to do.
Boston_Oat
Posted
Fours days post-op now, a quick update.
I've had two post-op check ups so far. Initially it looks like I've come out a bit farsighted in my RE - I measured +2D on my 1 day post-op, but it improved to +1.5D at my 3 day (usually it would be a 1 week, but Thanksgiving throws off the scheduling).
So while its weird to be farsighted (I've always been slightly near sighted and could always pull things close to my face to see them), my overall distance vision is awesome. I'm reading to the 20/30-20/25 line uncorrected (20/25 is a stretch), but 20/25 is clear with some alight correction (primarily for astigmatism) and i can also read 2-3 letters on the 20/20 line. In my adult life, I don't think I've ever read better than 20/35 overall, and likely worse in that eye, so to me this is pretty life changing.
Compared to my still-cataract non-operated eye, the world is much crisper, colors are cleaner, contrast sensitivity is better - it's all the things people say it will be but you're unsure of until you actually see it with your new eyes. Driving (daytime) is super, and my intermediate distance has come in enough where i can read my dashboard without glasses (tested by closing my non-operated eye). The distance vision was so good that when i pulled out of my street, I unleashed a stream of expletives because it was so amazing (I really don't think I can say "Holy sh!t" enough times).
Since we did monofocals, my intermediate is definitely not what I'd desire, but we'll see how it evolves over the coming month, I can use a cellphone or tablet without glasses but favoring my non-operated eye, Doc had me pick up a pair of 1.5 readers which helps (2s probably would have been better, because I'm used to holding things closer). Depending on how the intermediate comes in over the coming month will determine how we do my LE - I'd be a big fan of aiming for a blended vision approach. Right now I think I'm naturally in a mono/mini-monovision state (+1.5D operated RE, -1D natural LE) and am tolerating it well (though it's a bit weird at times).
Overall though, and this is the thing I'd emphasize to anyone with congenital cataracts, is while I've so far lost some accomodation by having to use the monofocal lenses, it's amazing to finally be able to be corrected to something approaching 20/20. In the past, I've been given glasses to correct for a slight astigmatism, but to be honest, I could barely notice a difference. But since you can't correct for cataracts with glasses, you're mostly stuck with what you see. But now when the doc spins the dials, I can actually see clearly! To 20/20! That is something amazing.
I was sitting next to an older gentleman (probably 65-70) at my one day post-op and i heard him tell his wife that this surgery is almost a miracle - I'd have to agree with that sentiment so far.
More updates to come as this settles in. LE scheduled for Dec 16.
W-H Boston_Oat
Posted
Sorry if don't remember, were you not going with Trifocals?
Your sight will improve even more hopefully. 4 days is way too early 😃
Today my wife started seeing the sharpest far far away, at exactly 4 weeks!!!!!
Takes 2-6 weeks on average for vision to settle.
Guest Boston_Oat
Posted
So nice to hear!
I had congenital as well, and I was to blown away by the colors, contrast and depth perception that comes with removing the cataracts, so I can relate to your experience.
Boston_Oat W-H
Posted
W-H - Trifocals were the original idea but we had to go to monofocals for two reasons.
One - I'm amblyopic and apparently that counterindicates the multifocals
Two - during my operation, they found iI had a tear in my capsular bag after removing the cataract, so they made a game time switch to an Alcon Acrysoft lens to implant into my sulcus instead of the planned Tecnis lens. This is because its a better design for sulcus implantation. I don't think they could have put the Panoptix trifocal there so if we had planned on the trifocal and I was wheeled out of the OR with a monofocal I think I would have been a but bummed
Boston_Oat Guest
Posted
Thanks Danish - exactly. I was driving yesterday and doing the eye comparison A-B test and thought to myself "I really need to clean the windshield" and then i realized with my new eye that the windshield is clean, its my remaining cataract thats dirty!
The way I've been explaining it to people is its like gaslighting - the change has been so gradual that i hadnt realized how icky my vision had gotten.
W-H Boston_Oat
Posted
Boston sorry to hear about the capsule rupture 😦 Looks like you are doing well. Healing will make things even more better. Keep you eyes lubricated and follow the drops as advised by the doc.
.
What is the long term outlook for sulcus implanted IOLs? Maybe ask your surgeon about it and if you need to be careful or watch out for any warning signs?
Boston_Oat W-H
Posted
W-H - great Q. That's on my list for my next post-op checkup.
From the small bits I can find on the internet (it's not the most common procedure), I think the main concern is shifting or dislocation of the lens. Since its not held in place by the capsular bag, it has the haptics tucked into the iris I believe. So its stable but doesn't have the bag to cradle it per normal.
Boston_Oat
Posted
Update now that I'm 2 weeks post-operative on my right eye.
Vision has come in really well. My distance vision is the best I think it's ever been. I'm still pretty amazed at how vivid things are, the details I can see, etc. My wife (who is very nearsighted and has a very strong prescription) and I keep playing the "I can see it, can you?" game and I'm consistently beating here which is fun.
Intermediate vision is mixed. I can see things out to about arms length really well. Once it gets closer than that, things start to blur out. It's no where near as bad as I dreaded it would be (if I saw like this with both eyes, I could still do just about everything short of read and use a computer), but it's not as close in as I'd perhaps like. However a pair of +1.5 reading glasses make quick work of things, especially with font sizes pushed up just a bit on my phone / tablet / PC. Honestly, I could probably use less power but my non-operated eye is fairly nearsighted so +1.5 for now is a good balance.
I have my second eye scheduled for Dec 16, and will see my doc next week for a 3 week follow-up and to plan for the next surgery. I'd likely to ask her for more intermediate vision so I can mostly get by without glasses where I can. I'm also considering trying out multi-focal contacts after surgery as the glasses are great, but I hate carrying them with me constantly for certain tasks.
Guest Boston_Oat
Posted
Sounds like the surgeon have hit the target very well 😃