Surgery for nystagmus? At this age?

So here’s my story…
As a young child, my parents were told that I could have surgery to “correct my nystagmus” however I wasn’t old enough at 6 years old to do that yet. Then my father moved the family to Florida and the Pediatric Ophthalmologist told my parents that I was “too old” to have this surgery. Now I have recently been to an Ophthalmologist who knows very little about nystagmus but tells me he doesn’t see why I was “too old” for surgery. Now I have to seek a Pediatric Ophthalmologist who understands nystagmus and seek their opinion. Has anyone heard of this age situation? Does anyone have any suggestions? Pros? Cons? Direction for this?
Thank you in advance for any assistance or knowledge :heart:

Hey Lisa,

Great question, that question is quite specific and I think beyond what I can answer, I suggest speaking to your doctor and eye specialist about that one!

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That’s my next step. Just unsure if anyone has faced something similar.

I had surgery to “correct” my null point at 24, not sure if that’s what has been suggested for you.
The idea was that by changing my head tilt (by tightening muscles in my eye) my eyes would shake less. Botox was suggested as a more short term solution too. I found that the surgery did help particularly in reducing eye fatigue.


Thank you. I believe that is what they are referring to. I appreciate that information. Hope to hear more in the upcoming months.

We shared your post on Instagram, this is a response we received.

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Thank you so very much :heart:

  • Lisa

Thanks for jumping in on this Claire and welcome to our community, it’s great to have you hear!