Did anyone post surgery develop nystagmus at the edges of your vision? I can’t look left or right for more than a few seconds before the picture jumps everywhere and I eventually start to see stars. Followed by serious disorientation that lasts for a couple of seconds but then throws me into a fit of nausea for hours.
@Eric1 has your hematoma been reassessed?
No dude…they don’t rescan you unless your symptoms worsen. Not too mention I don’t have another $5k to pay the ER again.
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Well, you went from not having nystagmus to having nystagmus, so I see that as worsening (unless you’ve had it immediately since post-op and just mentioning it now). But makes sense about the money.
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I was just wondering if someone on the site had experienced the same thing. 2 years ago I had really bad nystagmus, $10k on vision therapy mostly eliminated it. It is back post surgery.
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Interestingly, I had bilateral cataract surgery about 2 months ago & have had peripheral vision nystagmus since then though it’s starting to resolve now. It was much worse if I was in a place w/ fluorescent lights & didn’t make me nauseous like you’re getting @Eric1.
I had it previously about 12 years ago prior to my ES diagnosis/surgeries when my vitreous humor was detaching from my retina in each eye. It lasted about a month for each eye, but again, it didn’t cause nausea but did cause distorted vision.
Sounds to me like an eye doc appt could be worthwhile. It could also be related to your carotid hematoma if it’s not completely healed.
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Already went to the eye doctor…“nothing wrong”
Hmmm…super annoying about the eye doctor. I’d think they’d pursue it a bit more if they didn’t have an immediate obvious answer. It is a weird situation for sure.
I just did a quick look at which cranial nerves are involved in nystagmus & the vestibulocochlear came up as the dominant one. That’s one of the nerves we suspect can be irritated by vascular ES. Though it seems a bit after the fact, since you’ve had surgery, it’s possible that your internal post op swelling could be irritating it which means as the swelling resolves, that symptom should, too.
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Yeah, who knows. I was wondering if anyone else had dealt with it and what the treatment may have been to help. Each day that passes, I remain more and more convinced that I am just cooked.
Try to have a positive mindset as that gives your body an advantage toward healing. Fearing the worst raises your cortisol levels. Those are stress hormones that do the opposite of helping recovery as they can keep you in a mental & emotional funk. Find things that make you laugh & focus on those. It has been demonstrated that laughter is healing especially when you feel awful.
I’m sorry that you have this back again, I can’t recall anyone having this after surgery, I’ve done a quick search of the past discussions & can see some references, with most people feeling it’s linked to balance & the vestibular system, mostly pre-op but one mention of swelling post-surgery possibly irritating nerves … We do try to be helpful and supportive, but if we don’t know your medical issues before surgery and what ES symptoms you had then it does become guesswork with as useful suggestions as we can offer… As this & disorientation can be a sign of a neurological condition then it’s not unreasonable to suggest that your doctor should be concerned, & a scan might be in order, so I’m sorry that you can’t do this.
It seems to be vestibular rehab which has been tried for this, is that similar to the vision therapy you had before? It sounds so debilitating for you…
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@Eric1 - I woke up this morning thinking about your eye symptoms & it struck me that they sound like the visual migraines I had for 4-5 days after my angio/venogram. I my peripheral vision in both eyes would get “shimmery” for a bit then I’d get a bad headache for 30-60 min. I understand that visual migraines can cause headaches that last much longer, too.
Here’s a link to an article about them. The description in the article doesn’t exactly fit what happened to me, but as w/ all things medical there can be variations in symptoms & duration from one person to another.
In my case, I think it was a reaction to the contrast used in the angio/venogram, but I have a friend who gets them intermittently for no known reason. It’s possible if what you’re having is visual migraines, that they’ve onset as another of your body’s reactions to the surgery you recently had. If that’s the case, the good news is, there is a chance they will resolve on their own over time as your body continues healing.
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I’m not experiencing any nystagmus but I did just see Dr. Hepworth who told me that my bouts of nausea and ringing in the ears is likely due to Superior semicircular canal dehiscence (SSCD). Some other members on here have had issues with it. Dr. Hepworth mentioned that ES might make this worse by eroding or pressing on the layer between the ear and bone (or maybe erosion of the bone itself? I don’t remember exactly).
I only bring it up because I looked it up since then and a lot of people seem to experience the nystagmus issue along with the nausea. Dr. Hepworth mentioned that ES surgery may not address this particular issue even if it helps other Eagles issues. Maybe that’s causing the issue? Just another avenue to explore. Sorry you’re dealing with it at all. Hope you figure it out.
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I think that other ES doctors have suggested that the pressure created if the IJVs are compressed can wear away the bone over time & cause SCDS.
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@RobotEagle I agree that I think SSCD can could be a root cause of nystagmus and that IJV compression due to ES can increase the likelihood of SSCD occurring or becoming symptomatic (as well as Meniere’s disease).
There’s also this paper on IJV compression and persistent oscillating vertigo which may be relevant - i.e., rhythmic perceptual changes in space could lead to eye movements, particularly to the rhythm of the heart beat in the case of vascular compression
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