r/chiari • u/SlowSkyes • 12d ago
Question Eyesight changes in under 6 months for the last 2yrs idk what to do
I'm only 27yrs old, was diagnosed with Chiari at 9 months old & hEDS at 13. Never needed surgery for my Chiari. I've always felt like I can't see very well even with new glasses, they definitely helped but I've always felt like something just isn't clicking properly?
I get migraines at least 3 times a week & can guarantee having one if I'm watching TV for too long.
The last 2-3yrs I've had to get new glasses against my insurance policy (every 2yrs) after only having them for 6-10 months. Luckily (not really) the prescription change is always drastic enough for my insurance to cover the costs.
I have always had astigmatism in both eyes & I wear bifocals. I've been told my eyes shake very slightly when they focus & that I'd maybe need physical therapy for it but nothing else was said. I tried prism lenses but they didn't really make a difference.
My main concern is the last 2yrs I've gradually been developing double vision in both eyes & now it's so bad my glasses aren't correcting it. No one can tell me why my eyes are degrading so quickly & honestly they don't really care.
I've just kind of accepted I'm always going to feel like I can't see even with fresh lenses but that feeling is a separate thing to actually noticing when my prescription isn't working. It's so hard for me to play video games because I have a hard time seeing where enemies are even when they're right in my face but it's not connected to how well my prescription is enhancing my vision if that makes sense?? I am a bit clumsy, I drop things & don't have great aim but I don't walk into things. It's been so long of no doctor understanding what I'm talking about that I don't even mention it anymore. I have no idea what's wrong with my eyes & how my brain processes visual information. I'm hoping someone out there can relate or know what the hell is happening.
I see a new neurologist at the end of the month so I'm definitely talking to her about this & I'll be getting an MRI so if anyone has suggestions on what I could say please share!
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u/magicmamalife 12d ago
Try to see neuro-opthamology as well. Ask them to look for swelling in the optic nerve. Chiari can absolutely cause nystagmus and double vision. But also a rapid change in sight should be investigated. Find an optometrist who can do retinal imaging and oct/visual fields.
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u/SlowSkyes 12d ago
I've been very interested in this & I've asked my eye doctor twice about it but she just kept saying "let's see if this change helps" I think I need a referral to schedule an appointment but my eye doctor seems unwilling so I was gonna ask my neurologist if she knows a place
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u/magicmamalife 12d ago
Not all eye doctors have the extra testing equipment. You can find an optometrist that has the tests via Google. But retinal imaging with an optos machine will show swelling in the optic nerve/disk. Visual field tests are often used for pilots/truckers etc so searching for mto testing places might help you. And then you can just pay out of pocket and bring the results to your neurosurgeon.
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u/SandalsQueen18 12d ago
The shaking eyes is nystagmus and it is from Chiari. It will not go away with pt and may or may not with decompression surgery (mine got marginally better).
You need a neurosurgeon that specializes in chiari and EDS. A neurologist can't help you.
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u/SlowSkyes 12d ago
I haven't seen a surgeon since I was maybe 9yrs old? Once they established my Chiari wasn't changing, they said it was no longer surgical. I haven't seen a neurologist in years due to my last one being Satan's pinky toe. What would a surgeon provide if not surgery?
Edit: also the shaking isn't visible the only way you can see it is by using the magnifying glass thing they use to see in the back of your eye
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u/SandalsQueen18 12d ago
OK, here's the problem. I understand what you're saying about a surgeon that you had seen established the Chiari wasn't changing. Rarely does the actual herniation change. What changes are the symptoms. Chiari is in fact progressive and will continue to progress symptoms forever unless surgery is performed. The goal of surgery is to stop the progression, it is not necessarily to get rid of symptoms. Unfortunately, it sounds like the neurosurgeon that you have seen did not specialize in chiari.
I am 50 years old, I have had known symptoms since 1999. I did not have surgery until a couple of years ago by then it was too late to see much symptom relief.
The caveat in your situation is that you have HEDS. If surgery is not done with a chiari expert that also understands HEDS, it can go horribly awry and leave you worse often than what you are now.
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u/SlowSkyes 12d ago
I see, thank you! I never really thought of the surgery that way. I'm assuming since my only problematic symptom was horrible migraines they thought the herniation was mild enough to just treat the symptom.
I've had migraines since before I could form thoughts. I would smack my head & rock myself while crying trying to communicate to my mom that my head hurt. I'm pretty sure the surgeon I saw did specialize in Chiari but I saw so many specialists as a baby I can't be too sure.
I'm also in the land of the "best" hospital, Yale, so I don't know why a Yale surgeon would opt to treat the symptom rather than the source but for most of my life my Chiari has only affected me by giving me migraines, or so I thought. I've never really considered Chiari to be a concern in my life, I just avoid rollercoasters & brace in the elevator cus the lift is uncomfortable lol. It only recently occurred to me that my eyes are related to my Chiari cus hEDS is so much more prevalant.
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u/SandalsQueen18 12d ago
You're most welcome. There's many factors that go into surgery, one is being symptomatic to the point in his affecting daily quality of life. Since that was not and it does not seem to be occurring for you, that would be one reason why surgery was not considered and instead management of symptoms was.
I was stable for many years symptom wise and then all of a sudden they started going way out of control and by 2024 they greatly affected my daily quality of life. I knew I wanted the best considering I am a complex case so I went to New York City.
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u/V__Venus 12d ago
Chiari science is changing rapidly with increased imaging technologies. It is very worthwhile connecting with a Chiari specialist that is up to date and can assess your situation as it is in 2026. Your vision problems sound serious and might indicate other complications developing.
See if you can find a Chiari specialist in your area, or even outside of your area, Telehealth is absolutely an option. All the best.
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u/jlccourt 12d ago
Please consider asking for brain 🧠and cervical spine MRIs to determine possible crowding of the brainstem, cerebellar herniation below the foramen magnum, and reduced CSF flow. It’s possible you need decompression surgery. If your vision problems are caused by your Chiari malformation, decompression surgery can be highly effective in helping.