We are in the process of getting second and third opinions. To date, my daughter has only had a CT Sinus scan and Doppler Ultrasound of jugular. The ordering surgeon wanted to spare her contrast to which she may be allergic. But she feels that more information is needed before going in so wants to do a CT Venogram and/or CT Arteriogram if necessary. But should it be of the head or neck or both? And it seems some people suggest rotational views. How important is this? Can the Venogram capture problems with the carotid? Thanks to all you incredibly knowledgeable people out there!
A CTA (angiogram) is what is most commonly ordered & a CTV (venogram) can be more difficult to obtain as it seems many radiology labs have no idea how to do one. As I understand it, the difference in these scans is that for an angiogram, contrast is introduced via IV, & the images are taken during the arterial phase of the heart beat (i.e. soon after the blood/contrast exit the heart.) For the venogram, contrast is introduced & the images are taken during the venous phase of the heartbeat (as the blood leaves the skull through the jugulars).
The ICAs & the IJVs can both be seen in an CTA but the focus will be on the carotids whereas in a CTV the focus will be on the jugulars. Even with both arteries & veins visible in a CTA or CTV, the radiology report will generally focus on the arteries in a CTA & the veins in a CTV.
As you likely know, an iodine based contrast is used for CTs & is less likely to be problematic for the patient than the Gadolinium used in MRI contrast.
I believe a CTA/CTV can be done of the neck & skull areas simultaneously i.e. the field of view can be adjusted to include both. Discussing what’s best with a doctor you plan to see before seeing him/her is a good idea as different doctors have different desires for the types of imaging they want to see.
I hope this helps.
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You have no idea how much this clarifies things!! thank you!! 
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Members have been able to get imaging done timed to show arteries & the veins, so it is possible…
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That would be great. Iodine contrast is a big unknown for my daughter. I don’t think she’ll be able to do it twice… Thanks, Jules!
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here are some additional recommendations made for me by Grok as I try to write my letter for out of state care and additional tests.
Prioritization and Rationale
- Top Picks:
- TCD (Inpatient): Dynamic arterial flow data—critical for your loop (IJV, ICP, bleeds/strokes) and insurance case.
- Cervical 3D CISS MRI: Anatomical detail of styloid-IJV interaction, building on your head CISS.
- MRV: Venous outflow assessment, complementing TCD and Doppler.
- Secondary:
- Neck Doppler (dynamic retry) if feasible locally; qEEG for symptoms; lumbar puncture if ICP is a key question and safe.
- Why These?: They address gaps (flow, venous impact, neck anatomy) the head CISS and static Doppler missed, while avoiding contrast. They directly support your out-of-state surgery need by proving IJV compression’s functional consequences.
It goes into great detail why I need them. for example,
An MRV isn’t a step down from your CTA—it’s a distinct test offering venous-specific insights your CTA didn’t capture (flow effects, ICP clues). It’s “completely different” in its venous focus, making it a valuable addition to your TCD and prior imaging, especially for insurance justification. Pairing MRV (venous) with TCD (arterial) and your CTA (structural) could create a compelling case for surgery
Note that the facility I use will not do an outpatient TCD so still trying to find out where to get outpatient or try to get it done inpatient
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wow. thank you, Jugular Eagle!
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A neurologist said the only test he knew was the one that goes through the groin and can be positional. This test is problematic for me for a number of reasons so I am trying to concentrate on the non invasive least problematic tests.
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As far as I’m aware (& am happy to be corrected!), usually a CT with contrast angiogram or venogram is just done with an IV in the hand…the groin is used more when they’re measuring pressures I think?
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Thanks, Jules and JugularEagle. Yes, this became very confusing. My daughter’s PCP said the CT Venogram was done through a vein in the arm, but Dr. Nakaji’s interventional radiologist says they do it through the groin. That seems much more invasive running a catheter around the heart!
This has been confusing to me as well. The one with the groin has stroke risks. For some reason, I thought Nakaji required the more invasive one which is the only thing really that has put me off to using him.
The comment I made about my neurologist pertained to dynamic testing with moving head around when he said it was the only test he knew of that would do what I wanted.
I didn’t know about TCD back then to ask him or if I did ask him (which I can’t remember) he said the groin test was the only one.
here is what grok says:
A CT angiogram (CTA) does not require going through the groin in most cases. It typically involves injecting a contrast dye into a vein, usually in the arm, to visualize blood vessels using a CT scanner. However, certain specialized CT angiograms, like those for complex vascular procedures, may require arterial access through the groin (femoral artery) if a catheter-based approach is needed, but this is less common for standard CTA.
I had a CTA. Contrast went into the vein. I have no idea if this is different than what Nakaji wants but I am pretty sure he wants something more complicated before surgery to measure pressure
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Yes, he does! I talked to his interventional radiologist assistant yesterday. So curious that Hepworth doesn’t think it’s needed…
If you situation warrants not wanting the groin version due to stroke risks, etc you might ask him if there is another alternative.
I get he is wanting to make sure surgery is necessary but here is what happened to me with one of these and I tell you because of the med issues you might have in your family.
I was in the hospital checking my heart (turned out to be vasodepressor syncope). Before the diagnosis they sent me to OR to do a test that goes through the groin. It is suppose to be done while awake. they had to put me out to do it. Now, I suspect the issue was with the pain medication they were using. I also know there can be more risks once you have had one done.
So I asked Grok:
Having a prior procedure through the groin (e.g., via the femoral artery or vein) can increase the risk of complications for subsequent procedures, but the degree of risk depends on several factors. Here’s a concise overview:
Scar Tissue: Previous procedures may cause scar tissue at the access site, making it harder to access the vessel and potentially increasing the risk of complications like bleeding or vessel injury.
Vascular Damage: Prior interventions can weaken or narrow the vessel, raising the risk of complications such as pseudoaneurysms, hematomas, or thrombosis.
Infection Risk: Repeated access at the same site can slightly increase the risk of infection, especially if the site hasn’t fully healed.
Individual Factors: Risks are also influenced by patient-specific factors like age, obesity, diabetes, or vascular disease, which can complicate healing or vessel health.
However, modern techniques (e.g., ultrasound-guided access, smaller catheters) and experienced interventionalists can minimize these risks. The risk is generally manageable, and many patients undergo multiple groin-access procedures safely. Your doctor will assess the specific risks based on your medical history and the procedure type.
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Did you have a stroke with the procedure?
No, I was much younger. I am now having strokes and brain bleeds that you can see on MRI. It is not the kind of stroke YET where you have a physical problem so I had no idea. I think my styloids are contributing to the issue.
I dont want to do a groin procedure because of the risks.
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Of course, that is understandable! Would the one done through a vein in the arm safer for you?
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Yes but doesn’t show the pressure readings he wants.didnt even tell me how much blood flow was reduced. Just said severe
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@mogulmama & @JugularEagle - The test Dr. Nakaji is requiring through the groin is a venogram (angiogram is a more common term & can refer to a study of the arteries or veins via a catheter which enters vessels in the groin). Contrast similar to that used in CT scans is used & the catheter/blood flow are observed & pressure gradients are measured along the route via a fluoroscope. Angio/venograms are more precise because the blood flow pressure gradients measured can reveal where there are constrictions in the vascular system & how severe they are.
A CTA or CTV which require contrast to be given via IV in the arm or hand only reveal still images of the vessels & can show visible sites of compression but don’t give an accurate picture of the degree to which a vessel is compromised.
I suspect Dr. Hepworth isn’t requiring a venogram in your daughter’s case, @mogulmama, due to his experience w/ hEDS patients. He recognizes the risks for your daughter & feels he can tell enough via the US & the CT scan images he’s seen to know she needs IJV decompression surgery.
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thanks for the clarification. I am going to write my Primary Care Doctor and get a referral to Nakaji even though I dont want to do that test. I am at least going to see if he will take me as a patient. I am impressed with the surgery he just did.
He does have a twitter feed if anyone wants to view it
https://x.com/peternakajimd?lang=en
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