I’m 35yo Mum with 2 kids living in Western Australia.
Recently diagnosed with Left sided eagle syndrome and IJV compression. My left styloid is around 6cm long and the IJV is compressed between the Styloid and C1. My right Styloid is also long but it is not causing pain because the nerves and veins don’t appear to be impacted on that side.
I’ve been getting pain, dizziness and extreme fatigue for a long time, but it all seems to be getting much worse lately. I’m getting ringing in my left ear and some facial numbness and nerve pain on the outer corner of my eye and eyelid almost like I have a stye.
I also have been waking in the night with my heart racing so fast and feeling suddenly nauseated. Sometimes I wake up with a numb arm. I’m really foggy struggling to focus and think clearly. I can’t do much but rest most of the day because I get headaches and horrible pain, and I’m limited with the positions I can have my head and neck in and can only sleep on my right side.
Has anyone had this pain on the corner of the eye and palpitations and was it related to the vagus nerve or arterial?
I am supposed to be getting Styloidectomy in the next 2 months and I’m hopeful it will help to alleviate a long list of uncomfortable symptoms. Also any advice on how to sleep to avoid the gnarly night time symptoms?
Hi, I have sent a bit of info with a pm for you, but you might find this discussion by @GrnyAny helpful: Successful Surgery for severe Vagus Nerve Compression - General / Eagle Syndrome Stories - Living with Eagle
There’s lots there about vagus nerve compression symptoms…
Pain in the eye can sometimes be from carotid artery irritation, but also from Trigeminal nerve irritation- this and the facial nerve are often affected by the styloids. Here’s an image of the TN so you can see where pain can be felt:
I do get aching in my eye from this, so it might be an issue for you? I do get dry eyes too & have to use eye drops, don’t know if you do? There are nerve pain medications which can help, it might be worth trying? There’s info in the Newbies Guide Section about treatments.
I found sleeping propped up with a wedge pillow and a few other pillows helped with the head pressure, I used a V shaped orthopedic pillow/ nursing pillow too which helped take the pressure off the sides of my neck. Amitriptyline helped me with the nerve pain, & this does make you drowsy so it helped with sleeping as well! Sleeping propped up after surgery is advised to help with swelling, so if you try it now at least you’ll be used to it!
Brain fog is common with IJV compression, it’s improved for me since surgery.
Hope this helps!
Hi there Jay! I don’t have too much to add that can help you for ES, but just wanted to say hello and send my best wishes to another Western Australian! I had surgery for clicking larynx almost 5 months ago with Dr Lewis, and i believe someone else had styloidectomy with him also just recently. Can I ask who you are seeing? Not many Perth Doctors see this from what i hear.
Thanks for chipping in @F_t , I did let Jay know you’ve recently had surgery in Perth by PM, I’m glad you’ve reached out, & hope all’s going well for you
Hi F_t
Thank you. I am currently waiting to be assigned an appointment with a surgeon at Fiona Stanley’s ENT Dept but also on the list for a phone consult with Michael Elliot in Sydney for a second opinion.
I’m hoping to have surgery within the next few months.
How has your recovery been going? I hope you are feeling better after surgery.
I feel you completely. Sometimes I feel like every cranial nerve in my neck is being compressed. I get really bad pain behind my eyes, not a migraine or headache. I get really bad ear pain and I also experience tachycardia in certain head positions. I have recently been getting heart palpitations of a night when I get into bed too. I have right sided jugular compression but believe my nerves are being compressed on both sides. The only position I can sleep in at night now is on my back with a cervical pillow. I do not even attempt to sleep on my sides anymore bcos the pain is awful. I wish you well and hope you can be relieved of your symptoms soon!
I don’t know any of the surgeons at FSH, but i know that Hollywood hospital has a great food menu! Highly recommend the mac and cheese with strawberry mousse after throat surgery! It’s the little things. I’m so much better after surgery, still some slight bother but nowhere near what it was before. My dizziness has actually decreased as well, which was unexpected. Dr Lewis did surgery the day before me on venous compression, for a woman getting dizzy when she turned her head. I’m not sure what his wait times are, but it may be worth contacting him to enquire?
Hi, sorry to hear you have going through this too. I had a lot of the same symptoms as you, especially the tachycardia - which prior to unilateral surgery 4 months ago got very bad whereby it wouldn’t reduce in speed. I was told my calcified ligament was touching my external carotid artery and since surgery I haven’t had the eye pain and pain next to the nose I was having. I do get eye and eyelid twitching though on and off since the surgery.
Unfortunately for me, the tachycardia has been much harder to see improvement with. I got to a good place about 2.5 months post op for a few days where I didn’t have it at all and was able to sleep in any direction but had a flare up a few days later (I think I over exerted myself) and have been struggling with it again since. It’s could be inflammation pushing on the artery, but my feeling is that it’s actually the vagus nerve.
I’ve been considering a consult with Michael Elliot if things don’t improve in the next few months so please keep me updated on how you get on with him. I’m nz based so would have to do a Tele consult or sim.
I spoke to Dr Elliot last week and he has requested some more scans to observe the veins in the brain. He says it looks like I have Stylojugular syndrome on the right sight and nerve irritation on the left side. It seems like perhaps the right side is causing issues but it’s the left that is causing all the pain.
Interesting because I was booked in to have the the left Styloid removed to ease the pain, but the right side is likely more problematic in other ways.
Scans next week and then I should find out more about what is the plan for surgery. I will keep you posted.
The Tachycardia, for me it was SVT type. Is that what you have been dealing with as well?
Did you have elongated Styloids on both sides?
I think it would be good to talk with Dr Michael Elliot because not many other ENTs seem to look for or recognise the compressed veins as an issue.
@Jay, What great news that Dr. Elliott has acknowledged what your scans show in a succinct way. You’re correct that most ES surgeons don’t treat IJV compression during a styloidectomy so it’s great that he does. I think we’ve had a couple of members who have been treated for stylojugular compression by Dr. Elliott with good outcomes, but I can’t recall who they are now as it’s been a while ago.
That’s great that you’ve had a positive consult with him. Does he think the Stylojugular syndrome is causing the tachycardia? Or is he thinking that’s the left side?
My left side was causing all the pain and major symptoms for me. I had slight compression of the IJV and the tip was touching the ECA especially when moving my head to the left. The pain and symptoms were debilitating, particularly the tachycardia and Accessory nerve pain through my shoulder, clavicle: chest and arm. My right side is heavily compressing the IJV but I don’t have any significant symptoms on that side. Maybe ringing in the ear but nothing I can’t live with right now. Even after my surgery for the left, the right has been very tame - but imagine I’ll have to get it removed in the next year. I’m still working through the recovery (i have some inflammation still) so haven’t seen resolution of the constant tachycardia or some other nerve pain yet, but the pain has reduced. I have some periods where I don’t feel pain through my shoulder/arm at all which is promising. Before surgery even on the SAN good days, I’d still feel the nerve’s presence. I’ve also got almost full motion of my upper back/shoulder muscles back post surgery
I think my tachycardia is the sinus rhythm one but I’ve had palpitations off and on over the years too. My issue with the tachycardia is that it is constant, it doesn’t go. And sometimes it will just race so fast. I had a major flare up before my surgery where is was fluctuating in speed every beat - the bpm on the machine going up for about 10 seconds and then going back down. Which repeated for maybe half a day. That could be happening when I’m not hooked up to a machine but my heart investigations some years ago didn’t show any abnormalities generally.
What are your left sided symptoms?
I feel for you @Bravekat. The tachycardia is awful. Did the doctor prescribe a beta blockers for you? That helped me when I had an episode.
I did ask about what he thinks is the cause of the tachycardia but he didn’t have an exact answer. I had thought it might be vagus nerve related, or like you have mentioned some carotid artery irritation with certain head positions. He didn’t have much to add at this stage.
On the left side for me, I have a lot of pain in the neck and ear area made worse by movement, chewing, yawning, singing. I have slight loss of hearing in that ear, Eustachian tube dysfunction and ringing in that ear. Sometimes I get some pressure in my left eye or numb feelings around my lips. The headaches, puksatile tinnitus, head pressure, dizziness, unable to exert myself, difficulties sleeping, may be more the IJV compression on the right side.
How long ago was your surgery? Did you have resolution on any of your symptoms so far?
