I had my second styloid removed 6 days ago. One of my pre surgery symptoms was derealization and visual disturbances. When I came round I had eye pain on that side (like a migraine) which went, but my all my visual symptoms are worse… focusing is difficult, everything feels bright, static, after images and can’t take in surroundings. My right eye feels weird, almost like the muscles aren’t working properly. Wondered if anyone else has experienced this? If so, was it temporary? Thank you. I’m in the UK and not really sure what to do if it doesn’t resolve.
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Hi, sorry about eye issues. I’d recommend you start by visiting an opthomologist (not just an optician) to get your eyes thoroughly tested, including pressures on both eyes (one eye pressure may be higher than other). Check retina not detaching too.
Also suggest see GP & ask them to refer you to local eye hospital for checkups. Can’t do any harm & will help you monitor what is happening. Local eye hospital can refer you to Moorfields if needed.
Or you can go to Western Eye Hospital (NHS) in london which is open 24x7 for walk in eye patients.
Sadly I do not think medics yet understand why JV compression causes eye issues. Hepworth spoke about this on webinar & how this patient group is not picked up by eye doctors.
Hope you get some eye help soon. Take care. D
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I’m so sorry that your eye symptoms are worse…I’ve certainly not experienced this myself.
I agree with @PatientD that you should see an Ophthalmologist too.
Some members have had drooping eyelids as the facial nerve can be irritated during surgery- is yours okay? Alsoas @PatientD says, Intracranial Hypertension can cause visual symptoms too; it can affect the Oculomotor nerve, so I don’t know if you have had vascular ES and this could be contributing? Did Mr Hughes mention any vascular compression when he did the surgery? If there was it could take a little while for the pressure to improve; swelling post surgery could be making this worse. Here’s a link to an article about IH & ocular nerve palsy:
Episodic Oculomotor Nerve Palsy with Intracranial Hypertension and Carcinomatous Meningitis - PMC (nih.gov)
Ignore the meningitis bit, I’m not suggesting that you have that, it’s the link between IH & the nerve which might be useful.
I can’t remember, were you seeing a Neurologist as well about your symptoms before surgery? If you’ve seen a Neuro, how did that appointment go, did they have any suggestions. A brain MRI might be worth getting too…
I hope this goes soon Babzie, praying for things to improve 
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@Jules @PatientD Thanks for commenting.
I’ve had so many eye tests. I get sent to a place via the local hospital and now they just see me freaking out about my vision and send me off as severely anxious! I see them again at the end of October.
JH made no comments re compression. I didn’t get a CT with contrast, so I went in just hoping for a resolution. My anxiety is so bad now, it’s impossible to know what’s going on and no one is interested in investigations. My GP says she couldn’t refer me to Moorfields. I did book a private appointment, but my Bupa limit is maxed out, so I have to wait until May.
In the meantime the Neurologist suggested migraines, FND or mental health… so I’m having CBT and an assessment by the local Psychological Medicine Services and taking Amitriptyline.
I feel battered and at breaking point. Doesn’t help that I’ve had no voice for 6 days either and choke when I drink. Not sure if to contact JH sec or see GP. Very fed up.
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I haven’t had surgery but I definitely had these eye symptoms when my symptoms were really bad. I felt like my eye muscles weren’t working but mine was my left eye, it took a while to focus on things and sometimes it felt like I would look with my right eye and then eventually my left eye would come over to join in after a few seconds. If I changed from looking at something up close and then in the distance the muscles would be slow at doing that. Eventually this went away and I haven’t had these symptoms for a while but I do have other eye issues (text looks slanted, occasional double vision, depth perception off). You should definitely get medical advice quickly, you can’t take anything for granted with your eyes.
Ps. I was also very severely anxious at the time, I couldn’t function properly, I was looking at my phone A LOT which tires out the muscles, I found not looking at a screen really helped so this could’ve been completed unrelated to ES for me.
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I suggest you ignore your neurologist. Migraine is a symptom, not a root cause. FMD they use for 40% of patients- it’s a “we don’t know” diagnosis. Don’t let them make you believe you are mentally ill. The physical problems are real, they are justifying their ignorance. D
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I found neurosurgeons are more helpful than neurologists. D
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To help calm you maybe try a free Headspace trial? It takes some practice but meditation may help calm you. D
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So frustrating for you, @BabzieAM, but I agree w/ @Jules that your symptoms increase could be the result of post op inflammation & may settle down as the weeks pass & your body heals. I also agree that eye symptoms that severe shouldn’t be ignored & someone qualified should take a look at your inner eye to see what’s going on. I’m sorry you’re stuck in a medical system where it’s hurry up and wait rather than hurry up & proceed with care. I will pray you can be seen soon by someone who can give you an idea of what’s happening.
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100% agree with patient D. Personally, I’ve found the NHS very dismissive of my symptoms, as soon as there was nothing blatantly obvious to them on my standard MRI they dismissed me as having anxiety, somatisation, FND, fibromyalgia, Chronic fatigue, depression, post viral fatigue, etc…basically any condition that didn’t warrant any further investigation and could be treated with antidepressants. I have refused all of this because I know my symptoms are real and now I have a CT scan that shows my styloid processes to be 1cm too long on each side and discontinuous calcification of the ligaments. I’m now battling to try to get a referral for a follow up scan to see if there are any vascular issues. You have to keep pushing them, it is really hard work. I have headspace as well which I’ve found helpful for the anxiety.
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I totally agree with the nhs being totally dismissive and more concerned with getting you out of their hair with stupefying medications. I’ve been battling for nearly 5 years and various routes have ended up in dead ends and misdiagnoses.
At the moment, my red swollen throat is the main excruciating problem but no matter how many times I tell them about the pus oozing out from behind a tonsil bed, no one listens! Pushing gently and milking it seems to provide some temporary relief but this time metronidazole is not helping. Am pretty sure there’s a peritonsillar abscess there so why has it not shown on scans?
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@BabzieAM I would contact Mr Hughes about losing your voice & choking rather than your GP…I’m so sorry that nobody has any answers- you’re doing the right thing going along with the Neuro’s suggestions, at least if nothing improves that’s something else which can be ruled out…Unfortunately sometimes we have to jump through the hoops they put in front of us 
@Skatkat I hope that you can get a scan with contrast to see if you have VES…
@Mcwelly beyond frustrating for you that you’re not being listened too- I don’t know if it would help, but could you keep a sample of the pus which comes out from your tonsil bed & take it to your GP, explain that the metronidazole isn’t working now & insist it’s tested? Or have you tried that? I hope it does improve soon…
Hugs and prayers for all of you
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Thank you @Jules - I don’t understand why never swabbed! I’m not sure how to get a sample as it’s a small amount from right at the back and the only thing I could try would be a cotton bud? We’ve just arrived in France so will end up going to a dr here. I’ve started taking famatodine 40 mgs for acute gastritis, probably caused by the frequent co amoxiclav but usually that did work till it all comes back 2-3 mths later. I gave no faith in anything now, scans that fail to pick this up, scans that fail to even mention styloids, drs who don’t reply to any communication, referrals rejected, and so many wrong diagnoses. Is it me? Some sort of write off?
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Ps @Jules - metronidazole prescribed by dentist who yet again saw my swollen inner mouth and excluded a dental cause.
Sorry everyone having such a tough time getting help. D
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Tried JH’s office for advice and was told not concerned I can’t speak or swallow properly at day 7. Probably the tube and gas I had. No comment on the bright vision, but I feel it’s anxiety. I feel so awful I don’t want to go outside and feel emotionally a total wreck. Hoping it’ll all settle. The bruising came up today and it looks like my neck/face took some trauma, so it’s still early days. The stuff that flared up round 1 (dizziness, pressure & nausea) were the things that resolved. Praying this is a good sign heavily disguised. 
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Hi, if you have light sensitivity just now then sunglasses may help (even indoors) & avoiding bright lights.
Sounds like post op swelling may be a factor? If so you might try seeing a physiopod therapist with Hivamat deep oscillation machine as very good at reducing swelling. Take care. D
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@McWelly, You may be on to something seeing a doctor in France to try to get a diagnosis(es) for your symptoms. Here is the name of the only French doctor on our ES list. Depending on where you are in France, it would be great if you could get in to see her if only for a diagnosis.
•Dr. Elisabeth Sauvaget - Hospital St. Joseph, Paris, https://www.hpsj.fr/specialites/oto-rhino-laryngologie-orl/lequipe/ (May no longer be doing ES surgeries)
I’m so sorry for the pathetic medical treatment you’ve gotten so far in your own country.
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@BabzieAM - I agree w/ @Jules & @PatientD that your current symptoms are most likely due to post op swelling. If you can recall your first recovery, it does take about a 4-6 weeks post op for symptoms to start going away in greater earnest. Your job now is to be resting, taking short easy walks, & doing as little as possible around the house so your body can heal. The harder you push yourself now, the slower your initial recovery will be as your body puts its energy into your current activities & not into healing. Doing whatever you need to in order to maintain a positive mindset & to reduce anxiety as this is your best possible course of action. Anxiety releases cortisol in your body which increases inflammation. The lower your cortisol levels throughout the day, the quicker your inflammation will reduce & the better you’ll feel.
Patience is key with recovery from ES surgery as you’ve experienced.
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Thank you @ Isaiah_40_31. We re nowhere near Paris and to be honest, I’m not too fit to travel far with a dog and camper van but will try and rest up, finish the course 28 of antibiotics and try to get my head around being told my nurse practitioner that I’m only going to get symptom control. Basically it’s palliative care? With no diagnosis, it’s hope snatched away completely. I really feel I’ve been written off because of my age - 69 now. Thank you for caring xx
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