Jugular involvement anyone?

Hi fellow Eagles!

found this awesome article yesterday with some great pics showing jugular involvement with ES.

https://www.researchgate.net/figure/5766139_fig9_FIGURE-9-Volumetric-reconstruction-Less-intense-internal-jugular-vein-compression-on

I can compare my own pics see similar.

has anyone had jugular involvement as well as carotids and internal carotids? If so, I would love to know, if you have had surgery, has there been improvement?

thanks in advance!
Della - FNQ Australia

Hi Della. On my right side they told me the styloid was compressing the carotid artery and jugular vein. (They didn’t see that on my ct scan but only discovered it when they did my surgery). And I felt better immediately after the surgery. It was a night and day difference - right away. I know other people got improvement over time, but for my vascular side it was immediate healing.

thank you, that is terrific to hear. I can see it on the Ct angio from Jan 2015 and figure it’s all worse by now as I have had a couple of neck injuries since. Did the compression cause really bad right sided tinnitus? I am convinced that the tortuous ICA seen on that scan and other carotid and jugular compression is causing the dang tinnitus. It’s like the sound of water under high pressure in tiny pipes and only on the right side.

yay thanks for the reply, I can only hope for surgical improvement :slight_smile:

You’re so welcome. It’s great to be able to share our successes.

I didn’t have tinnitus. But we’re all so different.

I’m wishing you the best. I hope you can get your surgery soon.

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Thanks for that link Della- will have a good look at that! Always interesting to find links to new articles.
I had jugular compression both sides, but not carotid. After the first surgery I had an almost immediate improvement in the worst symptoms (had some horrible feelings when lying down like my brain was being steam-rollered, really felt like I was going to die, but can’t quite explain it, plus constant off-balance/ drunk feeling), once the swelling had gone down. I’ve had the second surgery and again a bit more improvement. I do still get a bit of pulsing and feeling a little pressure on the worst side- the doctor felt that it had been compressed so much it hadn’t fully re-opened. He talked about the possibility of stenting it, but I felt the risks of that surgery weren’t worth it for the small symptoms I have left. (If you’re interested in the stenting issue there were a couple of discussions about it). The pulsatile and normal tinnitus I’ve had both sides have improved but not gone completely.
Hope your surgery works as well!

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oh wow Jules!

I have had that constant horrific feeling now for over 4 years. Very hard to describe and it’s like I have been in a different “gravity” than the rest of the world all this time. When I lie down it’s revolting and some nights feel like I am falling through the bed and this nasty whoosh whoosh of my pressures alongside the tinnitus. I can’t even have the softest corner of a pillow or anything pressing against my neck without making it all worse.

I worry that there wont be an updated Ct angio as I know this has gotten so very much worse since Jan 2015. I can’t move my head even a tiny bit without all of this these days. It’s been years of this and whilst I know my system has tried valiantly to compensate, it’s pretty set in. I can see on the axial slices that internally the right jugular is like 3 x the size of the left and being compressed and can see the external image in 3D showing the bulging under the compression with the right twice as large as the left.

horrid horrid stuff!