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.
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Henry-
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
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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.
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I have all of those!! and EXTREME fatigue/shortness of breath. Please stay in contact and I will too.
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.
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Do you sleep half upright? That really helps with IH; I had a wedge pillow, a few other pillows & a V-shaped orthopaedic pillow at my worst!
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I will try that! is that because the brain uses the other veins to drain?
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.
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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.
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Hi, I’m curious about the following:
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?
Best regards
Hi Henry,
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.
Colie3387,
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.
Hi The Dude,
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.
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Thank you Isaiah. I just called Dr Samjis office. Will keep after it. Will reach out to another couple.
Hi Henry,
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.
Thank you Isaiah. I am just worried at the moment that I won’t get prompt treatment. Lot of suffering. I see that I am not alone in that.
Hi Collie
Is your mrv with contrast?
Sorry to hear of your struggles.
I also have bilateral internal jugular vein compression from c1 and styloids
Suffering greatly. Having an invasive venogram next to check pressure gradients and measure narrowing
Good luck 
Hello Isaiah,
thank you very much for your quick reply, again.
Of course, I’ve already thought about the body positions and set up my office ergonomically.
The symptoms, in fact, seem to correlate with mental exertion.
This does not occur, for example, when watching a video in the same positions.
Or, if I write in English it will be worse than if I write in my mother tongue. Driving a car for example becomes really exhausting after 2 hours …
Have you ever heard of something like this?
Hi @TheDude
Can you correlate these episodes of exhaustion to times when you using your arms, e.g. typing, driving, or simply holding a book?.. I noticed that my arms give pain to shoulders, which makes the neck stiffen and that increases brainfog too.