Hi everyone
Thank you so much for the support so far. So grateful. I have many symptoms but im very much interested in hearing others visual symptoms and what they are. From pain. To blurry and everything in between. I have lots of eye symptoms and light sensitivity is one of them. I was told today that blurry vision wasn’t a huge symptom of eagles and feel a bit deflated. Many many thanks.
I understand feeling deflated. When oral surgeon first found that I had ES - the first thing I said was could that be causing my headaches - he said he thought possible but, that I would have to go to ENT - I went to the ENT that fixed my deviated septum. He asked if I had a sore throat, which I did not so he said I didn’t have ES … wouldn’t even look at the x-rays I brought with me. I was deflated. I don’t know if ES has anything to do with blurred vision, but, I have been noticing that my right eye seems to have blurriness off and on.
@GiGi1965 thank you for replying
Are you diagnosed as easgles? Where are u on your journey? Many thanks
I just started my journey! The oral surgeon that saw it on 360 x-ray came into the room saying I had it, I was like what? so, he showed me the x-ray - it reminded me of The Predator in the movie, except just one set instead of two. This was summer of 2021. My late husband and I were both pretty hopeful that this could be cause of headaches and then both of us deflated by the ENT. My late husband was ill and approaching the end of life - so, put ES out of my mind… fast forward, my now husband has been praying about my headaches and asking for us to find the cause. The whole month of November I had auras (haven’t gotten them in year or so) I was getting them a few times a day and then one of them which I call gas fume auras because its like looking through the fumes reminded me of The Predator because when he was invisible that is what my auras look like - I was like Eagle Syndrome!
Went to a different ENT and he assures me does not cause headaches … but, he’s not an expert and I appreciate that ordered a CT Scan of neck to confirm ES. Right styloid 5.3 cm and Left 4.1. I see him again in a couple of weeks, probably last time I see him, I’ll be asking him for a referral to someone that has experience, if he doesn’t want to - I’ll ask my PCP. So, yep, just beginning. I appreciate this forum so much … I’ve learned so much and feel better equipped to advocate for myself. I have other symptoms besides the headaches.
@GiGi1965 sorry to read all your sadness. I.send all warm wishes. Dont forget its not justvabout the length…its also if they are calcified and other issues. Where are you based?
Kentucky,US
@JoJomoo - ES can cause blurry vision, eye pain (I had that), pressure behind the eyes (I had that, too), visual snow, double vision, & possibly other symptoms. Eye symptoms are usually seen with vascular compression - most often of the internal jugular vein but sometimes with compression of the internal carotid artery. These symptoms usually go away once the vein or artery is decompressed. The cause of compression isn’t always the styloid or calcified stylohyoid ligament though so having a dynamic CTA &/or CTV scan with contrast or a dynamic ultrasound of the IJVs between skull base & collar bones with a study of the blood flow rate through them at various points can help determine whether or not there is vascular involvement in your symptoms.
I’m sorry I can’t give you any help w/ doctors in the UK, but I’m sure you’ve read by now that many members have seen Mr. Hughes in London. He would be worth consulting.
•Dr Jonathan Hughes, London (ENT, published an article in ‘Top Doctors’ website) https://www.topdoctors.co.uk/medical-articles/differential-diagnosis-eagle-syndrome .
Mr Jonathan Hughes : University College London Hospitals NHS Foundation Trust (uclh.nhs.uk) Practices privately with the Circle Health Group in London
The same information I gave @JoJomoo applies to you, too. Headaches w/ auras are known to be possible symptoms of ES. They often are related to vascular compression, most likely of the internal jugular vein. The IJV can get squashed between the styloid process(es) & the transverse process(es) of the C-1 vertebra, however, there are also other possible causes of IJV compression such as by a nerve, muscle, or scar tissue.
Dr. Costantino in NY would be a good doctor for you to see for an evaluation of your CT with contrast as he deals specifically with IJV compression or vascular outflow obstruction as he calls it.
•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS
Here is the link to a post @Jules wrote that will be helpfiul for both you & @JoJomoo regarding symptoms of vascular compression:
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Thanks!
Blessings,
Christy
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I’m struggling very badly with visual snow, blurred vision, floaters, dizziness, tinnitus, balance issues, derealization… I have neck pain and head pressure, but the visual stuff has rendered me housebound now!
I see Hughes in London a week Monday and I managed to get my GP to refer me as urgent to Axon.
2.5 years of being told it’s just anxiety, a mental breakdown & a private scan at a chiropractor to find out I have massive styloids!! It’s been a horrible journey.
Everyday is a living nightmare. I hope you manage to get treatment.
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