# Diagnosed with JVC/Eagle, then had normal angiogram! **URL:** \ **Category:** General\ **Tags:** stories, treatment, symptoms, internal-jugular-vei\ **Created:** [October 9, 2026, 3:21am UTC](https://forum.livingwitheagle.org/t/diagnosed-with-jvc-eagle-then-had-normal-angiogram/24602 "2026-10-09T03:21:20Z")\ **Posts on this page:** 5\ **Page:** 1
**Author:** ![loriann](https://avatars.discourse-cdn.com/v4/letter/l/ccd318/32.png) [@loriann](https://forum.livingwitheagle.org/u/loriann)\ **Post date:** [October 9, 2026, 3:21am UTC](https://forum.livingwitheagle.org/t/diagnosed-with-jvc-eagle-then-had-normal-angiogram/24602/1 "2026-10-09T03:21:20Z")
I was diagnosed with jugular vein compression/eagle syndrome after having debilitating symptoms for over 30 years. I just thought before this I had M.E./CFS mainly. Wondering if anybody had this experience or has any opinions on this- after getting that diagnosis I went for a cerebral angiogram with venous pressure measurements. I was then told that my measurements were normal and surgery wouldn’t help. This came as a massive shock and disappointment as I thought I finally found the answers to all my horrible symptoms and can treat it. I’m really confused because my CT with contrast showed I have this, even the Neuro ophthalmologist said there’s pressure on the optic nerve , but then the angiogram said I don’t! I’m wondering if because the angiogram was lying down instead of standing perhaps it doesn’t show the compression. I also have hEDS, so I’m more prone to this. I’m writing in the general group, but I am Canada. Willing to travel for another opinion, diagnosis and treatment. Love to hear your thoughts…thanks… ---
**Author:** ![Emerald](https://avatars.discourse-cdn.com/v4/letter/e/bbce88/32.png) [@Emerald](https://forum.livingwitheagle.org/u/Emerald)\ **Post date:** [October 9, 2026, 7:57am UTC](https://forum.livingwitheagle.org/t/diagnosed-with-jvc-eagle-then-had-normal-angiogram/24602/2 "2026-10-09T07:57:53Z")
Hi Loriann, Were your venous pressure measurements taken under sedation or anaesthetic ? If so this can falsify results due to venodilation, changes in blood pressure and lowering of intracranial pressure. Also when you were diagnosed with internal jugular vein compression did you have a dynamic CTV where your head was turned from side to side and flexed. Maybe you have a compression in one of these positions but not in the neutral position that you were placed in for the venous pressure measurements? The other possibility is that you have a collateral venous system that “compensates” when you are doing nothing but lying down i.e. for the venous manometry measurements. In this case the collaterals work like a “pressure relief valve” keeping venous pressure measurements normal despite a severe blockage or compression in the internal jugular vein(s). The only problem with this and which could explain you chronic fatigue syndrome symptoms is when you actually do some form of minimal physical activity your collaterals are suddenly not enough and decompensate and hence you develop you cerebral venous congestion symptoms. Also it is important that a doctor verifies your venous collaterals with a 3D rendering of your CT scan as sometimes this venous system is varicosed. It thus could work reasonably well as a “pressure release valve” when lying down rested, but nothing more. ---
**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\ **Post date:** [October 9, 2026, 2:31pm UTC](https://forum.livingwitheagle.org/t/diagnosed-with-jvc-eagle-then-had-normal-angiogram/24602/3 "2026-10-09T14:31:09Z")
That’s so frustrating! @Emerald has given you some excellent advice/ suggestions and is more knowledgeable than me, so can’t add alot. Did you have the testing done in Canada? Unfortunately there seems to be an awful lot of reluctance to treat ES there, and much ignorance, so I just wonder if your measurements were misinterpreted? Given that IJV compression shows on your CT and with a compressed optic nerve as well, there is something going on! If you are able to travel & fund the surgery it’s still worth sending your scans etc to one of the VES doctors I would think? The doctors we know of treating VES are Dr Lui in NJ, Dr Costantino in NY, Dr Cognetti in PA, Dr Hepworth in CO , Dr Nakaji in AZ or if you wanted to go further afield Dr Agheyev in Turkey or Mr Axon in the UK. ---
**Author:** ![loriann](https://avatars.discourse-cdn.com/v4/letter/l/ccd318/32.png) [@loriann](https://forum.livingwitheagle.org/u/loriann)\ **Post date:** [October 9, 2026, 6:51pm UTC](https://forum.livingwitheagle.org/t/diagnosed-with-jvc-eagle-then-had-normal-angiogram/24602/4 "2026-10-09T18:51:29Z")
Wow, thanks for your knowledgable feedback. I wasn’t under general aesthetic during the cerebral angiogram and lumbar puncture just some pain medication. I was lying flat and did not move my head for the test. I don’t think we have a dynamic CT / or 3D imaging in Canada. But I will have a follow up with the doctor that first diagnosed it from the CT with contrast to find out what else can be done. I really feel like this is my issue it’s been a daily struggle with pain and fatigue, headaches, dizziness, memory issues, brain fog… ask about dynamic imaging/3-D imaging. I’m willing to go to the US. Apparently my styloid is not elongated. However, the jugular is being compressed between C1 and the styloid having EDS is a factor. ---
**Author:** ![loriann](https://avatars.discourse-cdn.com/v4/letter/l/ccd318/32.png) [@loriann](https://forum.livingwitheagle.org/u/loriann)\ **Post date:** [October 9, 2026, 6:52pm UTC](https://forum.livingwitheagle.org/t/diagnosed-with-jvc-eagle-then-had-normal-angiogram/24602/5 "2026-10-09T18:52:03Z")
Thanks so much. I probably will need to go to one of those doctors.