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 Doctorsā 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.
Weād love to see your pictures. Though we arenāt doctors, we can give our non-professional opinions.
Thanks for your response! I read on a mother thread that Samji is a little skeptical of vascular Eagles - does anyone know if this is true. Here is a copy of my MRV, both sides look like this.
Itās not that Dr Samji is skeptical about vascular ES, but that heāll assess people regardless of vascular symptoms. He likes to see the styloids on a regular CT, so isnāt worried about seeing a CT with contrast. If you want to see him or set up a phone consult, itās worth making sure that you have a CT of the head & neck to send. Thereās a discussion which explains what to send to him, if you search for CT protocol itāll come up with it, but hereās a link to save you time:
Your MRV shows clear compression, but unfortunately MRIās arenāt the best to diagnose ES because they show soft tissues, but a CT shows the styloids better. So not sure why the radiologist didnāt 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 ānormalā 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 Doctorsā 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. Itās 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 theyāre growing at, so it could be that theyāre compressing the jugular vein because of that. Or as Isaiah says, it can compress the vein against the C1 process. 2.5cms are the āaverageā, but depends on the size of a person- 2.5cms is going to be alot different in someone whoās 6ā for example compared to someone whoās 5ā !
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 hereās 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:
Itās about compression of the IJV by the styloid processes & C1, so you might find it interesting, especially the imaging.
Youād have to check with Dr Samjiās 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 ā 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 wonāt last that long.
Trying Mayo. Waleed Brinjikji. Letās stay in touch. Maybe we can find someone who can do these quickly.
I am too. Itās 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. Iād 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. Iāve 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 didnāt 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.
