Since I have one ear that works, I can hear ok, but say, “What?” an awful lot. Drives my husband & son crazy!!
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ES sure is a force to reckon with! ( Jokingly but seriously)
In 2017 (when my left ear was the main ES symptom and issue) my right eye would almost close at any given time. As if I had had a stroke. After the surgery I experienced nerve issues throughout my head but they eventually subsided.
Since I have moved to Concord/Charlotte I seem to be having issues with my left eye (randomly). I chalked it up to the poor air quality but your thread has me pondering over the symptoms. ( Thanks for posting)
As much as I despise glasses, eye wear, and another annual bill, I must be diligent; especially since blindness runs in my maternal family. I’m sure all will be well for all of us.
Take care of those eyes my friend.
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I hope you have a good ophthalmologist you can consult w/ @Blessu2. Considering your potential family predisposition to blindness, a thorough check should be in order if you’re having any type of vision problems.
I have blurry vision, well actually visual snow syndrome and my dilated fundus exam came back normal.
@Lemontree I would recommend a visit to a doctor. I have an excellent neuro-optometris,t who I report even the slightest change in vision too. She is fully aware of the effects of other illnesses on eye health, in particular inflammation. So, when I called her office and stated I had floaters that looked like fruit flies buzzing in front of my face, I was seen within hours. She is always very thorough with her exams. My eye pressure is checked, my field of vision, and she takes images of my eyes all before my pupils are even dilated. Of course, there is also the obligatory eye chart. But when my vision got really bad and the floaters persisted, she referred me to a retina specialist for an angiogram. Contrast was injected into my arm, and I was forewarned that once it reached my eyes everything would appear bright pink. Once that happened, a technician used a special medical device to capture images of my retinal vessels. After about a short 20-minute wait, the doctor showed me the images and told me that I had retinal vasculitis, which is inflammation of the vessels of the retina. She asked me if I have an autoimmune disorder, because something in my body was causing the inflammation. Months later, I was finally diagnosed with POTS and ES. Because of the inflammation and the risk it poses to my eyesight, I see my eye doctor frequently and have so far had 2 follow-up angiograms to stay on top of the vasculitis. Short answer? Go to your doctor if your vision becomes blurry, you have floaters, and especially if it suddenly seems like a shade has been pulled down over your eye(s).
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Thanks for this, it was very interesting to read, I feel I’ve always got an underlying inflammation and really thought it might have been sjogrens, but ANA test was negative.
The optician done a whole heap of tests when I said I’ve a sudden change in vision, eye pressure, dilation etc, I’ve a feeling if I went back to my Dr he’d only refer me back to the optician, where they’ve done all there basic tests and didn’t find anything. can I ask where you are based? I feel here in the UK they don’t quite connect the dots, each department is for that area of the body only, no one really looks at the larger picture, well in my case anyway. Thanks again 
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Hi everyone - it’s been a while since I’ve come on here after my bilateral surgery and I apologize for that. One thing I learned with ES. When your IJV is compressed it also affects your eye pressure which affects your optic nerve. It can cause damage to your optic nerve. Interestingly, I had a small amount of damage to both my left and right optic nerve and my eye pressure would spike. I had compression of my IJV on the left. After surgery my eye pressure came down and I haven’t had an increase of damage to my left optic nerve. Interestingly, my right optic nerve healed itself. My ophthalmologist has never seen that happen. My right optic nerve has no damage now. I had glaucoma testing prior to surgery and the tests were fine. I still have swelling and sometimes my eye pressure peaks but there has been no additional damage to the optic nerve. If you choose not to have the surgery there are drops you can use (prescribed) that will lower the eye pressure. If the eye pressure gets too high, that’s what damages the optic nerve. I would definitely recommend having eye pressure checked if your IJV is being compressed by your styloids.
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@Danielle1 - Glad to have you back & thank you for a helpful post! It sounds like you’re doing well except for a glitch w/ your eye occasionally. I hope that stops happening as you continue to heal.
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@Lemontree I’m in the Finger Lakes region of New York State. I agree most medical professionals only seem to concentrate on their area of specialty. I just happen to be very fortunate to have an eye doctor who’s curious enough and diligent enough to connect the dots. She taught me that the eyes are like the proverbial canary in the coal mine. If there is inflammation in the eyes’ vessels, something’s likely going on elsewhere else in the body too. What other part of the body besides the eyes can you actually look inside and see vessels and other structures without an MRI, CT, or some invasive procedure? The eyes in my case were the first confirmation that there was/is some kind of active disease process going on in my body. And thank heavens I have an eye doctor who took notice and jumped into gear.
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@Danielle1 You’re fortunate not to have glaucoma. I was diagnosed about a year or 2 ago and use Latanoprost every night to keep my eye pressure in check. I was diagnosed with a couple of other eye problems shortly after that, which led my eye doctor to start keeping close tabs on me. Things went down hill pretty quickly, and the deterioration in my vision coincided with the increasing unilateral pain and pressure in my ear, my neck, and in my temple. I hadn’t been diagnosed with ES yet, but knew something was going on in my neurovascular system and affecting my eyes. Thankfully, no damage has been done to my optic nerve. I credit my eye doctor for that.
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@CoHDa Please get your eyes checked again after surgery. If you have IJV compression from your styloids that could be a huge factor. My right optic nerve healed itself after surgery (weird). Will you be having surgery for Eagles?
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Thanks @Isaiah_40_31. My eyes are actually good now. The pressure went up which I think has to do with my sinus and eustachian issues. Having surgery this Friday. I forgot about (didn’t take into consideration and didn’t prep for) my Mast Cell Activation Syndrome which causes more swelling and pain. Even through this, everyday I love moving my neck without feeling the sharp daggers hit my jaw or my C1. I watched a video I took of myself during recovery with my mouth (temporarily) half paralyzed, black eye and other eye rapidly blinking and so calm. I thought it was so cute lol. I would never have felt so calm without this forum. I’ve had some stressful months but I’m back to help everyone else going through this.
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Thank you for the update @Danielle1. I’m really happy you’ve recovered so well but am sorry about the upcoming sinus/Eustachian tube surgery. I hope that clears up everything that remains which is keeping you uncomfy. MCAS is a tough thing to deal with. I hope once your surgeries are done it will settle down. 
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Rotten to need another surgery, I hope that this one is as successful as your ES surgery 
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@Danielle1 Because of my multiple eye health issues, I get my eyes checked several times a year. And if or when I notice even the slightest change, my eye doctor is extremely responsive, meaning she typically has me come into her office within a couple of hours of alerting her to any new complaint. I know not everyone is so fortunate. But she’s got me covered.
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Was bilateral surgery (I assume that means they cut both the right and left styloid during same surgery) hard to heal from? How long did you have to do a liquid diet?
No liquid diet was needed. Soft foods for a little while from the jaw pain.
Lucky, I’m 9 days post op and still on liquids, I’ve still a gaping hole at the back of my mouth. They decided to go in through the back of my molar and in that way. It’s so painful. I can’t open my mouth far, can’t even fit my tooth brush in. Im on round the clock pain relief. The taste from the wound is gross. Im not even sure how it’s supposed to look like and what it’s would look like if it was infected, it’s a mangled up mess. I don’t think I was prepared for the recovery of this, it’s a long road ahead; then my second op will come along and I need to do it all again.
Sorry for the rant. Eagle syndrome sucks
Who was your dr? Did you get anything for swelling (like prednisone)?
They sent me away with co codomol and ibuprofen. No one even looked in my mouth for the two days in stayed in hospital after the op, not that they’d see much as I can’t open it far. I said to my Dr over the phone I’m worried it’s infected but he said because I was sent home with a three day course of antibiotics from the hospital then I can’t get more. I’ve had no instructions for aftercare, like so I need to use a mouthwash or gargle with salt… nothing.
It doesn’t look like it’s heeled at all, that’s 9 days post op. I feel if it was an external op it would not have been as painful. 