I am having some trouble finding help! I went to a doctor who did an MRV that shows clear compression of the jugular veins, but the radiologist does not agree. I have pulsation timnitus, dizziness, and a whole host of symptoms. Therefore, I am struggling to find a doc that will even entertain the idea of surgery. Can anyone tell me doctors that would maybe be more into vascular Eagles and would listen to my doctors findings? Most of the docs I have seen are pretty close minded. Thanks!! I have pictures is anyone would like to see
Dr. Conoyer is in your state & listed on our Doctors’ List. There are also several doctors in IL. Dr. Samji in CA, & Dr. Cognetti in PA, both do phone/video consults but will need a copy of your CT scan & radiology report. There is a charge for these consults but insurance often helps w/ the cost. You should check to see what your will cover.
We’d love to see your pictures. Though we aren’t doctors, we can give our non-professional opinions.
It’s not that Dr Samji is skeptical about vascular ES, but that he’ll assess people regardless of vascular symptoms. He likes to see the styloids on a regular CT, so isn’t worried about seeing a CT with contrast. If you want to see him or set up a phone consult, it’s worth making sure that you have a CT of the head & neck to send. There’s a discussion which explains what to send to him, if you search for CT protocol it’ll come up with it, but here’s a link to save you time:
Your MRV shows clear compression, but unfortunately MRI’s aren’t the best to diagnose ES because they show soft tissues, but a CT shows the styloids better. So not sure why the radiologist didn’t agree, maybe because of this being not the best scan to diagnose ES? Have you had a regular CT at all? It would be interesting to see how long the styloids look on that.
Yeah that seems to be the issue Jules! My CT reads “normal” and styloids are about 28mm each, which is not extreme by any means. So I am not sure if something else could be compressing the jugular vein? I am lost.
In some rare cases, the transverse processes of the C-1 &/or C-2 vertebrae can press the jugulars up against the styloids. The surgery to repair this problem involves shaving down the TPs & possible shortening the styloids to make more space for the jugulars.
We have noted on the forum that measuring styloids from a CT scan is somewhat subjective because a CT is done in slices. Dr. Samji, the most experienced ES surgeon on our Doctors’ List, always prefers to measure the styloids himself because his measurements are often vastly different than those presented by the radiologist who writes the report for a given CT scan. It’s even common for the styloids to be found longer than expected when surgery is done, again because measuring is a somewhat imprecise science. I believe getting a second opinion from one of our more experienced ES doctors would be a good idea. Dr. Samji, Dr. Cognetti, or Dr. Hackman would be good options, but they will need a copy of your CT scan & the radiology report.
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.
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.
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.