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
Guest Boston_Oat
Posted
Hi there
I had congenital cataracts as well, it was discovered when I was 6.
I have just had my surgeries now age 45, I agree 100% with your father, I should have taken the step many years ago.
You can search for Janus´ post in this forum, he have made a very good explanation about the Panoptix.
I have a mix with one AT Lara (like Symfony) and one AT Lisa (Like Panoptix).
And I can tell you right away, that the trifocal, in your case Panoptix, is the one you want between the premium lenses you mention, if you want the full package here and now. If you would like more details about the difference between the trifocal and the edof, let me know.
Monofocals do give you other options, trifocal add ons on top of monofocal iols is one of them, add ons are easier to exchange, if something else happens with your eyes 30 years from now.
In any case I wish you the best of luck, I can tell you from my personal experience, it will be one of the biggest thrills in your life when you see the world without cataracts for the first time 😃
Boston_Oat Guest
Posted
Thanks Danish - your posts have actually been stupendously helpful learning the difference between the trifocals and EDOfs. Will let you know if I have any specific questions!
W-H Boston_Oat
Posted
Hi Boston,
Me and my wife are very active too, wife is group fitness instructor and also works in the office. We hike the Alps a lot and are at the gym 5 days x 2-3hrs every week.
It basically came down to Zeiss Monofocol vs Zeiss Trifocal for us. We ended up picking Zeiss Monofocal for Mini Monovision. Surgery end of this month!!!! Excited and scared!
My advice based on my research and talking to surgeons, for pure vision quality...Monofocal > Trifocal > EDOF. All of the surgeons I asked also said that they would do Monofocal (mini monovision) for their own eyes.
One surgeon rightly or wrongly also said that he would not recommend multifocals for young patients as they are compromise at each of the three ranges.
If you are going Multifocal route then go for Trifocal AT Lisa or PanOptix Trifocal, like Viking suggested. Get the best for the category you choose.
Wife was never open to Trifocal but she liked the surgeon we picked so much that recently she was willing to go that route if he pushed her that way. He did not so we are sticking with our original choice/his recommendation.
He advised us that there are future options like multifocal contacts lenses and also ADD ON lenses that can be used if the need arises.
Plus who know what future tech is going to come or what eye conditions we might develop as we age, so we went for the KISS option (keep it simple stupid) 😃
I also don't like the idea of LASIK surgery to correct any errors to be truly glasses free (can happen with trifocals that you are not glasses free).
Our way is not the only way so whatever you pick I wish you the best!!!!!
Boston_Oat W-H
Posted
W-H thanks for this feedback! Recently heard from my ophthalmologist (which I'll expand below) that because I have slight amblyopia, I'm not a good candidate for trifocals or multi-focals, meaning I need to look at monofocals. The mini-monovision I think is the way to go.
How has your surgery gone? Will have to sneak on your profile and see if I can find an update.
janus381 Boston_Oat
Posted
Boston:
Based on what you have posted, I think PanOptix would be a good option for you. W-H's wife is picking mini-monovision for her situation because she had excellent vision until recently, and monofocals provide clearer vision, plus less complex.
But your situation is pretty much the same as Danish_Viking. You have not had good vision. Anything will be a tremendous improvement. People often underestimate how much of their lives are at the near focus point and trifocals can provide you with good vision at near intermediate and distance. At your age, having vision at all ranges would be a great benefit.
You can read my post about my experience. My surgeon used to discourage premium lens, but she is very pleased with the PanOptix lens which has been used in Canada for 2 years, and in Europe for longer (and Europe has even longer experience with other tri-focals). PanOptix has been very successful in the Canadian market and many US doctors are hearing lots of positive reviews from Canadian doctors.
coppp Boston_Oat
Posted
Just wanted to share that I am 38 years old and 8 weeks post op on my left eye. I am yet to schedule my right eye.
I have congenital cortical cataracts but didn't find out until I was 36. I should have been proactive and get my eyes checked especially since I knew my brother did his surgery during his early 30's and my dad early 40's. I later found I have cousins and aunts that did there's as well around the same ages. Did you check your family history?
I will be going with Toric Monofocals. I would love to have TriFocals but unfortunately I have a macula disorder that eye docs told me I am not a good candidate for any premium lenses.I did ask about mini monovision but my doc says it may not be worth it, and with my condition it would be best to stick to one distance for the best quality outcome.
Good luck and look forward to hear about your journey!
soks Boston_Oat
Posted
are you going to see shirleen chen at mass eye? mass eye and mgh are among the best in the country.
Boston_Oat soks
Posted
I don't think so. I see Mei Mellott at Harvard Vanguard and they do their surgeries at ME&E. So I'll have a ME&E surgical team, but my Harvard Vanguard ophthamologist will be doing the surgery.
Boston_Oat
Posted
Hi all,
Just wanted to provide an update from my side for anyone following along (or any other young cataract patients who come and find this later).
Heard from my ophthalmologist that after consultation with Alcon (who makes the new trifocal approved in the US), they've indicated that my amblyopia is a counterindication for the trifolcals. My amblyopia is likely caused by me having cataracts since I was a child, but since it's also considered a corneal condition, it makes me a poor candidate for the trifocals, and really any multi-focal IOL.
My doctor is now recommending that I go the monofolcal route. To be honest, this gives me a bit of pause given the natural single focal plane of monofocals. I know that mini-monovision can be a great solution there. But it still makes me pretty anxious as a younger, active person who today is glasses free and makes use of all my various ranges of vision on a daily basis.
She did recommend I take a look at the nanoFlex lenses by Starr Surgical. Supposedly the design allows for between .5 and 1D of accommodation in your eye, but Starr never had them certified for this so can't really talk about it in any of their marketing materials. They're also a much smaller company with a much smaller market share than Alcon, B+L and the other major manufacturers so there's very little online about these lenses (outside of stuff from doctors who use them - little patient testimonials, positive or negative). These plus mini-monovision sound like they'd be a great fallback to the trifocals.
Plus as W-H says, there's always the potential for progressive glasses or multi-focal contacts later.
Just a bit anxious. My wife has been v supportive, but I know I'm a bit of a ball of nerves since it's hard for someone who hasn't faced cataract surgery before to think of the ramifications of what some of these choices mean for your lifestyle.
janus381 Boston_Oat
Posted
I never really looked much into accommodating lens as they are not used by any of the top clinics in Toronto. From what little I've read, I think they have had mixed results, and it is unclear what happens as you get older (will the eye lose the ability to accommodate as it does with the natural lens, leaving you with an expensive and less than optimal mono-focal?).
Some of the largest IOL makers do not have an accommodating lens in their line-up. I know Alcon doesn't offer one, but it did recently purchase a bio-tech that is working on one. this suggests the current accommodating lens have limitations.
Mini-mono will give you bigger range of vision without the complications and uncertainty of an accommodating lens.
Boston_Oat janus381
Posted
Thanks Janus. Thats definitely the interesting bit on these nanoFlex lenses is they're not advertised as an accomodating lens, and are covered as a monofocal under insurance. They have a fairly standard asphyric design for the optic. Biggest difference is the squared haptics. I know links herr are a no no so google it up and you'll see what I mean.
Since its basically a monofocal where i might luck out with some accomodation, that strikes me as a good deal, especially combined with some mini-monoviaion..If the accomodation is there, score. Of not, I end up with a standard monofocal plus mini-monovision.
The lens is also interesting as its not acrylic, but rather Collamer, which is basically callogen, water and another type of plastic. The comoany that makes them, Starr Surgical, uses the same material in their intercorneal lenses, which are basically embedded contact lenses..
W-H Boston_Oat
Posted
Generally I would stay away from accommodating IOLs as once the cells glue to it then over time it kind of freezes in place and all the accommodation goes out of the window. I prefer the KISS principle.
Too complicated for my taste...
You on the other hand are talking about this IOL I think? Looks safer but I don't know anything about the company or the tech behind it.
I like square haptic, they seem more stable. Your IOL shape is kind of closer to the Zeiss Premium IOLs.
Guest janus381
Posted
That nanoFlex iol looks interesting, but I really don´t understand how it in any way could be accomodating.
They don´t write much about it, is it because it is pupil size dependent?
Some of the older multifocal designs were pupil dependent, they moved the vision closer the stronger the light.
Otherwise it looks just like another monofocal to me. Maybe the defocus curve is more flat, like the Tecnis Eyhance, but that is not accomodating.
Is Tecnis Eyhance available to you?
W-H Guest
Posted
It has a triple shock absorbing spring on the back side 😃 Just joking in case someone thinks that it really has springs 😃
I was going to say to stick with big well known names but Alcon is as big as they come and they still have glistening issues!!!!
Guest W-H
Posted
Yes, I just found the picture on their website, it seems like the iol have an adjustment knob coming out of the ear 😃
It is hard to know what is best, for sure.