You can have ES from not just the length of the styloids, but the angle they’re growing at, so it could be that they’re compressing the jugular vein because of that. Or as Isaiah says, it can compress the vein against the C1 process. 2.5cms are the ‘average’, but depends on the size of a person- 2.5cms is going to be alot different in someone who’s 6’ for example compared to someone who’s 5’ !
There are a few other causes of stenosis of the jugular veins- Thoracic Outlet Syndrome, but usually there would be narrowing of the veins in the lower neck & going into the chest (I think!),
but here’s a quote from a research paper:
The etiologies of IJVS so far reported, include congenital disorders, thrombosis, stenosis caused by venous wall disorder, demyelinating diseases and extrinsic compression. Congenital disorders include aplasia or hypoplasia of IJV. This is the paper:
It’s about compression of the IJV by the styloid processes & C1, so you might find it interesting, especially the imaging.
You’d have to check with Dr Samji’s office about the CT with contrast, he does prefer without.
Thank you Jules! Yes I am 5ft and we have discovered my styloids definitely come down past c1 (per xrays). This is helpful. I am going to reach out to a few of these doctors. Thank you!!
I am also suffering from bilateral compression of jugulars by styloids. Confirmed with CTV by a doc at Hopkins. Trying to find someone to help — really suffering. Hopkins has a hold on these surgeries after one went bad. They take the styloid and shave C 1. Dr Ferdinand Hui of Hopkins found mine.
Just called Cognetti today. First available telemedicine slot is Feb. I won’t last that long.
Trying Mayo. Waleed Brinjikji. Let’s stay in touch. Maybe we can find someone who can do these quickly.
I am too. It’s been too long and I feel like no one will listen. I will for sure keep you updated on what I find. I sent some emails out today. I’d love to chat about the symptoms you are having
Collie my symptoms have included occipital pressure and pain, severe pain behind ears in the fleshy area behind the jaw, ear pain and pressure severe tinnitus, dizziness, brain fog, feeling of distress/pain between shoulder blades, neck pain and stiffness, pain in mid back in spine. Insomnia. I’ve also had hyperacusis ( this resolved) and two brief bouts of vertigo. This has all been disabling.
I should also note that I have had frontal head pain as well. The doc from Hopkins suggested keeping head in extension to try to reduce symptoms. This seems to help. I bought a soft cervical collar to keep chin up. This helps with the head and jaw pain and sometimes seems to reduce the tinnitus.
I was on Diamox to control the head pressure but since I have been keeping head in extension I have been able to cut back/eliminate the Diamox. I didn’t realize it but the Diamox was causing fatigue. Better now.
It will help with the pressure not building up overnight which it will do if you lay flat. The brain can compensate for the jugular veins being compressed by other veins taking over to a point.
Yes I do. I have the head of my bed propped up 6 inches. But I think maybe I need higher. Great suggestion. Thank you. I am very glad I found this site.
My symptoms get worse when I do mental work or concentration tasks. Especially the tinnitus (non pulsatile) and the neck discomfort. When things get very bad, I get muscle spasms on my head, down my back and legs to my feet, which only slowly subside over the course of days.
Can you also observe this dynamic in yourselves or are the IJVS symptoms actually only changing a little?
Dr. Cognetti has a history of leaving 1-2 cm of styloid behind which has caused some later problems for other members on this forum. I would try to find a surgeon who will remove your styloids back to your skull base & will also make sure to remove your stylohyoid ligaments if they’re at all calcified. Dr. Annino in MA, Dr. DeLacure in NYC & Dr. Hackman in NC are all doctors who remove to the skull base if at all possible. If you’re willing to travel, Dr. Samji in CA is the most experienced ES surgeon on our list. He did my surgeries, & I think the world of him.
Even though Dr. Samji prefers a CT w/o contrast, I would still reach out to him & send him what you have. Worst case, he’ll ask for one w/o contrast. It’s well worth your effort to have an appt w/ him.
Pay attention to your posture & head position when you’re in deep concentration. We often get into a relaxed, slouched position w/ shoulders rolled forward & upper back hunched, chest becomes concave, & head/neck tipped forward when sitting for prolonged periods. Being in this position for extended periods puts strain on the lower & upper back & back of the neck which will irritate a myriad of nerves & muscles over time. Try sitting w/ good upright posture - shoulders back, scapulas down, spine & neck erect but relaxed next time you do your work (this make take effort if you’re not used to it). Put your computer or book, etc. in a more elevated position so you don’t need to look down to view it. Just changing your posture may make a HUGE difference in how you feel.
I selected this video at random from YouTube (but did watch it first). It has a good explanation of what I’m talking about & the problems it can cause along w/ some really basic exercises to help reverse the problem.
The more doctors you talk to, the more opinions & different views you’ll get. This can cause confusion for you. It might be better to send your scans to & make appts w/ (either virtual or in person) 2-3 of the more experienced doctors on our list than to contact a whole bunch of doctors. We have had members who were diagnosed w/ ES by one doctor & told by another they didn’t have ES, that surgery wouldn’t help, etc. Some of these people have left the forum & chosen not to have surgery believing they’d been misdiagnosed when in reality they had not been. I’ve wondered how they’re dealing w/ their symptoms now.
