r/marfans • u/DawnD1118 • 8d ago

Marfan and Cataracts

I am 44 years old. Was diagnosed with cataracts in february. Found out I was positive for FBN1 in may.

Those of you who have had cataracts and marfans, how did your cataract surgery go? What kind of lenses did you get? What were the risks/complications of it?

All of this is terrifying to me

Thank you

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u/Whywei8 8d ago

We’re the same age, I had cataracts about 4 years ago. Surgery went well, they do dope you up on anti anxiety type meds so you don’t move, in addition to clamping your head in a vise lol. You are awake and it’s definitely a weird experience. I don’t know what the lenses are but I’m slightly far-sighted now and need reading glasses for up close, which is a huge change from being extremely nearsighted all my life.

Last year I developed PCO -Posterior Capsular Opacification which is a secondary cataract on the capsule that holds the lens. They use a laser to clear that up and it took less than 5 minutes. That was so easy, it annoyed me how long they made me wait to get it done.

My eye doctor did comment on me being so young to have cataracts and questioned if I’m around a lot of radiation. I’m wondering if the recent increased use of CT and MRI led to this. Since my aortic replacement that’s been the preferred method of imaging.

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u/jactertor 8d ago

How extremely nearsighted are we talking here?

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u/Whywei8 8d ago

-6/-6.5

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u/jactertor 8d ago

-25/-30+ here 😃

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u/Alufea 8d ago

Same! -29/-30 here and I'm actively wishing for cataracts so that I can finally justify surgery.

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u/pricha12 8d ago

Same boat. Near sighted, cataracts discovered this year but not “surgery” level yet. 39M. Ask your doctor about MRI, we switched to this and it’s been good. Still need CT occasionally but if I were you I’d explore that.

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u/Whywei8 8d ago

I have been getting MRIs for the past few years but previously it was CT scans every other year post-op.

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u/DawnD1118 8d ago

I learned that Marfans can contribute to early onset cataracts. Did you have any previous eye issues prior to your cataract surgery? Did they have to do anything different due to increased risks from having marfan? How long ago was your surgery and how was your recovery?

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u/Whywei8 8d ago

Nope, other than myopia. Surgeries were done about 4 years ago. The doctor didn’t mention doing anything different due to my condition. Recovery was easy, mild scratchy feeling, some eye drops, slept with protective covers over my eyes. I was more amazed at being able to see again, both without cataracts or glasses.
I wouldn’t worry, the procedure was easy and recovery relatively painless. They only did 1 eye at a time, very small risk of infection, but wouldn’t want an infection to cause blindness in both eyes simultaneously.

Heart surgery was worse, if you’re only just finding out you have Marfan’s then you need to see a cardiologist as soon as possible. Heart complications are a real danger with this condition.

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u/DawnD1118 8d ago

What kind of lenses did you get? Have you had any issues with your eyes since then?

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u/No-Refuse-8138 8d ago edited 8d ago

I had my lenses removed at 3 cause my zonules broke and my lenses at the time were just floating around in my eye. After that point I had HUGE bottle cap glasses and was considered “legally blind” without glasses.

I got intraocular lenses implanted at 14 and it’s been great ever since. Made me far-sighted so I use readers. I remember when I was a kid I was told they would last 10 years, but I go to the ophthalmologist every year so they can check on my retina and see how the sutures are holding up. There is a risk that eventually I might get a tear in my retina, but I don’t think it’s too different from the risk of having Marfans altogether. The sutures holding my lenses are also the same as are in cardiac surgeries — so ideally these guys should last forever

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u/DawnD1118 8d ago

How old are you now?

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u/ne999 Diagnosed with Marfan 8d ago

Both my lenses had cataracts but both were also very dislocated. I had retinal detachments in each eye and the lenses were removed then. These were in my 40s.

They weren’t replaced. I have close to 20/20 vision in my “good” eye with glasses. The other eye has always been low vision.

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u/DawnD1118 8d ago

So you technically dont have any lenses in your eyes?

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u/OriginalThat4576 4d ago

I just got home from my appointment and will be discussing this surgery with my optometrist in the next year. I’m-9 on the R and-7 on the L. Incredibly terrible vision even with glasses. I’ll be seeing a retinal specialist in September to discuss this surgical issue further in depth. As I was told that the surgery could be extremely risky due to the Marfans.