Please let us know who you’re referred to you get your referral. I hope Mr. Axon or whomever you’re referred to is receptive to seeing & helping you. I also hope Mr. Hughes is willing once he reviews the radiology report as having two supportive doctors would be amazing!
I applaud you for continuing to push for a proper diagnosis & am glad your neurologist is being helpful.
@Rosie are you able to go to the axial view of your original CT imaging and go to C1? I’ve attached a photo of my own imaging to help you know what to look for. If you can upload a screenshot of that axial slice I can see whether your styloids are causing any of the compression of your IJVs at C1 or not. Once I label your axial slice, I’ll have you scroll down a bit further to the tips of your styloids to see if they are indeed touching your carotids! Also, all images will be numbers and symbols when you add them, but when you hit reply or post they will turn into real images!
Thank you @Isaiah_40_31 & @TML I will look at my axial views today and hopefully can get a couple of images uploaded. Thank you for the advice with regards to how they upload on the system, I thought I was doing something wrong.
I guess the waiting time will be awful for the NHS, other members have found that for Mr Axon…good that the radiologist reviewed your imaging!
Hi @TML I will upload a different 3d view and also the axial view you have suggested. I also managed a short video whilst scrolling through. Would you mind seeing what you think. This is much appreciated.
I think my hyoid bone looks a bit odd aswell. I do have a clicking sound when I swallow, I think I’m falling apart. Any comments would be much appreciated, thank you all.
Hi @Rosie ,
See attached my annotations of your axial imaging at the level of C1.
Things actually look pretty good to me at the level. Your left IJV seems to be compressing against your C1 transverse process, but not sure if this compression is to a degree that would cause any symptoms or not. However, the vagus nerve runs down behind the IJV (so in between the IJV and C1 transverse process), so if you are experiencing any digestive issues, acid reflux, HR or BP fluctuations, this could all suggest some vagus nerve irritation or compression at this location. The styloids seem well clear of the IJVs and C1 which is good. ICAs seem clear of everything as well at this level.
I would like to see your styloid tips. So now that you know where the styloids are, just scroll down a bit further in the axial view and follow those tips. At the end of the tips, take a screenshot and upload it. If you scroll down even further you will find the hyoid bone (horseshoe shaped throat bone). I just uploaded a video of myself giving a tutorial of axial CT imaging and that video will help you locate the hyoid. Hope this helps! (just a reminder that I’m not a radiologist lol)
Thanks @TML for the labels, I have followed my left styloid down, is that the ECA on the right of my styloid, then it goes behind and ends up on the left? I have also uploaded a couple of my hyoid. I am on Beta Blockers to control my Migraines, which I have never suffered previously. My heart rate is only around 55 bpm. My blood pressure is also at the lower end now I assume due to meds. I have always had quite a good pressure previously around 130/75 & 80 bpm. I have a lot of headaches at the base of my skull and temples and have had digestion issues for years. I have pain in my neck, just below my ear which does swell on occasions.
I do wonder if your vagus has some effect on your current HR and BP difficulties. But medications are definitely worth considering as the cause.
In your situation, the 3D image and the axial view agree quite nicely. It appears that your left ECA snakes around the tip of your left styloid. You can see that in the 3D image, and as you pointed out, you can see the ECA move from one side of your left styloid to the other. I’m guessing your neck pain/swelling that occurs under your ear is on your left side? A really important thing to remember too is that these images are taken while you are laying still. With head movements, it’s likely that your left ECA becomes even more and less compressed depending on head position because your styloids move with the skull. You left styloid also has a hook shape to it at the end, so there could be moments where it’s grabbing onto the ECA or compressing it more so than other moments. Do you have any ear symptoms on your left that you don’t have on your right?
I can’t seem to see anything at the level of your hyoid. Some of your vascular structures aren’t super lit up so it’s hard for me to tell if there is anything going on down there.
@Rosie at second look and more zoomed in view of your hyoid slice, I think maybe you the left greater horn of your hyoid (the left tip of it) is compressing your left ECA? I’m pretty sure it is your ECA. You can follow it up and see if it is the same artery that is going around your left styloid to confirm. But I’m fairly confident it’s your ECA. So it seems your left ECA is being irritated/compressed/shifted in two areas - your left greater horn of your hyoid, and your left styloid. That’s just what I think I’m seeing, anyway.
My HR & BP lower levels have only occured since I have been taking the Beta Blockers and these are only prescribed for my Migraine symptoms. I was experiencing 24/7 migraines, including headaches, auras and split vision that lasted around 3 months. It was a very scary time. I have what I call more normal headaches now, skull pressure, constant high pitch tinnitus, left ear pulsatile tinnitus which I am more aware of at night and left ear fullness. Nothing on the right. My symptoms gradually worsen over the day and are better by the morning. I have insomnia and my GP has been prescribing sleeping tablets, which I limit to quarter tablet per night, which usually helps, although he has said he is reluctant to prescribe anymore. Up to this point my symptoms have been put down to stress/mental health as nothing had been diagnosed from my scans. I am so glad I found this site as I would never have known about ES and learnt how to self diagnose. Now that my Neurologist has agreed I feel total relief, but know there is still a long way to go on my journey. Thank you everyone for your advice a support, its been a lonely journey up until I joined this wonderful site.
Thats interesting @TML I will take another look at my hyoid in 3d in the morning. Hopefully this will show up a bit clearer. I assume ECA compression would give me the symptoms I am experiencing.
Yes 3D will help us double check the hyoid piece. It’s either your ECA or IJV wedged in there. At the very least we know the ECA is being compressed or tangled with the styloid. So that makes sense why all your symptoms are on your left!
