Chiari Online Support Group

Chiari and Nystagmus

Hi all! To make a very long story short, I just had my second posterior decompression surgery 1 week ago and very hopeful with time all will heal. Has anyone had a down-beat nystagmus in both eyes due to their Chiari and after surgery anyone have any success stories or how long it took for nystagmus to relieve? Thank you and much love :heart:

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Hi - hope you are healing following your 2nd surgery. I had nystagmus (side-to-side) in both eyes following my decompression surgery. It took a few weeks, but it did finally go away. I am now 3+ years since surgery, and while the nystagmus has not returned, I’m dealing with some double-vision (diplopia). The neuro-ophthalmologist I am seeing does believe it is chiari-related, but no “solutions” yet on what to do to try to fix it. Wish you the best as you recover. :smiley:

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Wow that’s interesting! Thank you so much! I pray there’s hope! Nystagmus is so so horrible. People don’t realize how bad it is because they look at you at think you look fine. I hope you’re double vision at least gets better if not subsides. I’m sorry :frowning: Is it only when you look at things certain directions? For me, right now if I look out of the corners of my eyes, everything is double and bouncing at same time.

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Before I had surgery, I had vision troubles galore. I saw many optometrists, an opthamologist, and a neuro-opthamologist. Unfortunately, they were not helpful with Chiari-originating vision troubles. I eventually saw a vision therapist. I did vision therapy for a year stint after surgery, then again for a longer stint. I did exercises daily and am now please with my vision. No double vision, wobbly periphery, easier reading… It took a lot of work as changing the brain’s processes takes time and effort. Note that prisms do not change the brain - they just push the eye around! Do not let someone talk you into them as they do not fix eye troubles, they just mask them.

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I forgot to mention the vanity aspect as my eyes are now straight in photos.

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You and I have the same issues with our vision. When I look straight ahead, all is fine. But when I look to the right, I have double vision. I really think there is something going on with my right eye. Also, when I saw the neuro-ophthalmologist last week, he was surprised to hear that my tonsils were not “removed” as part of my surgery. He is suspecting that maybe they are continuing to descend into my spinal column and causing these vision issues (which I never had prior to surgery). For now, he is monitoring me and I go back in 4 months. But he told me to call if things get worse. Hope things are going well with your recovery.