keratoconus - Should contact lenses move significantly with every blink?

October 30, 2016 6:34 PM

My boyfriend has keratoconus - a disorder that effects the shape of his cornea and causes vision problems including double vision. According to his opthamologist, it's a pretty severe case of keratoconus, but he's able to correct it with specially made contact lenses. I'm concerned about the fit of the contacts because they do not seem centered on his eye and they seem to be moving a lot every time he blinks...

Contact move slightly every time you blink, but his seem to be moving quite a bit... but I'm no expert so I can't really judge it. I should probably just trust that his opthamologist would have noticed if the fit wasn't correct.

His vision is better with the contacts, but not perfect.

Do any of y'all have keratoconus? Did your opthamologist get the contact sizing right on his first try? Is the doctor relying on verbal feedback to see if the contacts fit correctly or can he just see that they fit?

Would anyone be able to recommend a good opthamologist in New Orleans, LA? We've had issue with this one losing paperwork...

Thanks for your time.

posted by snickersnee to Health & Fitness (10 answers total)

Part of the fit testing is watching the lenses move after blinks. Positive feedback from the patient (me) has always been necessary, but never been sufficient, in my ~25 years of contact lens wearing.
posted by janell at 6:45 PM on October 30, 2016

My first opthalmologist mis-sized my regular ol' lenses, and it took two return visits before he admitted they were wrong. So it's definitely possible.
posted by metasarah at 7:05 PM on October 30, 2016

My hard lenses move when I blink - they're just moving back to where they should be after I blink.
posted by yarly at 7:21 PM on October 30, 2016

What kind of lenses?
I think it's normal with hard/gas permeable lenses. That's how I would check to make sure I hadn't popped a lens, I'd concentrate and watch the lens drop back into place when I'd blink. After awhile you quit noticing it. I don't know about soft lenses though.
posted by BoscosMom at 7:42 PM on October 30, 2016

Are the lenses hard or soft?

I don't have keratoconus but I have worn soft contact lenses for 22 years. Mine move ALOT when I blink only when they are in backwards (inverted). It's super annoying and I realize it right away and flip them around. When they're in correctly they do not move noticeably when I blink.

Long story short: if they're soft, try inverting them.
posted by ZabeLeeZoo at 8:10 PM on October 30, 2016

I have weirdly shaped eyes (though I've never had that specific diagnosis); I can say I've tried a number of different brands of contacts and all but one type either repeatedly fell out of my eyes upon blinking, moved around wildly in my eyes such that I couldn't see 30% of the time, or caused extreme discomfort. I had to draw the attention to all these issues before they were solved by switching brands. The only type that functions is Acuvue Oasys. And even this type isn't perfect - I take them out immediately when I get home because after too long they get to be increasingly hard to focus with and uncomfortable, and they also get weird protein build-up on them sometimes. But they're the best I've tried and I wear them pretty much every weekday.
posted by vegartanipla at 9:45 PM on October 30, 2016

Lenses to correct keratoconus are hard, soft lenses don't work.

I have keratoconus and used to wear these lenses and this movement fits with my experience, I'm no optometrist though. In the end I found the discomfort and trouble of the contacts not worth the improved vision, but I can cope with glasses, which may not be the case for your boyfriend.
posted by deadwax at 2:41 AM on October 31, 2016

I have keratoconus, but my overuse of contact lenses and the severity of my disorder resulted in having corneal transplants in both eyes. I have not worn contacts in over 20 years, but maybe my advice and experience might be helpful.

My keratoconus deformities were severe and my hard lenses wobbled and moved all over. The problem with this is an increased risk of corneal abrasion (which hurts like hell for two days and should resolve on its own with temporary discontinuation of lens use). I was in med school/residency at the time and wore my lenses for much longer periods at a time than is recommended (8-10 hours a day at most), so make sure he's not wearing them too long and that he's keeping them moist with eye drops. The next step is a pain but worked (until it didn't, but I was abusing my contacts) and involved wearing two sets of contacts -- a soft lens on the bottom with no prescription to protect the cornea and a hard lens on top to correct the vision. This worked well for a few years but again, this piggybacking (optho talk) required lots of lubrication for the health of the cornea and the stability of the double set of contacts. Worst possible scenario with this setup is when the contacts get too dry and the hard one slips under the soft one. I never quite figured out the mechanics of the rogue hard lens, but I almost always got a corneal abrasion as a result.

SO, yes hard lenses move because of the nature of the topography of the cornea, and piggybacking lenses might help, and giving the corneas a break as much as possible is the best way to avoid recurring corneal abrasion and ulceration, which usually leads to surgery (some people qualify for laser treatment, others need donor corneas and surgery).

Good luck! Memail if y'all need more info!
posted by danabanana at 6:22 AM on October 31, 2016 [2 favorites]

As other folks have said, RGP lenses move around a lot. They are generally a lot smaller than the iris and they can float all over it. My eye doctor tried a few different diameters on me, and that changed the way they interacted with my eyelids. A slightly larger diameter made a big improvement in comfort for me.

If they are comfortable for him but just look weird to you (compared to the soft lenses you're used to seeing that don't move) I bet they are normal.
posted by fritley at 11:39 AM on October 31, 2016

Go see Dr. Clifford Hendricks at New Orleans Eye Specialists. He sees patients on Prytania (near Touro) and in Metairie. I saw him for 10 years when I lived in New Orleans.
posted by radioamy at 10:44 AM on November 1, 2016