Who has had an ultrasound of their internal jugular veins and what flow volume and diameter showed stenosis that was pathalogical? Thanks
Hopefully someone will have specific info for you, I just had a CT with contrast which showed bilateral jugular compression. It was significant enough to need surgery.
Thanks Jules. Sorry to hear that. I am just awaiting a CTV. What surgery are you going to be having?
I have had a few IJV Doppler US images. How can I help?
Here is a bit more information to start.
Velocity of greater than 50 are considered abnormal. Diameter readings are usually compared from the jugular foramen, C1, and a few points below to the omohyoid muscle looking for stenosis. There is little evidence describing normal active data.
Keep in mind that this testing is very limited for a few reasons:
- it can vary greatly depending on the sonographer’s technique and pressure applied to the probe
- more importantly the readings are taken in supine which does not correlate to the functional position of being upright. Gravity influences the IJV greatly.
While it does have value it is not usually the primary form of imaging but a backup. CTV, MRA/MRV, and venogram are more reliable sources of IJV information but again are all done in supine.
Hope this is helpful!
Oh and one other thing, unless specifically asked for or ordered the US is done with the head in a neutral position. This often misses the potential impact of the styloid on the IJV. In my case all of my readings in neutral were normal but with my head tipped chin down and rotated the velocity increased to >150. Imaging in this position is challenging as the sound head is larger than can fit into the space to view the IJV…
Oh, I had mine removed in 2015 & 2016, made a massive difference to how I felt!
Thank you so much for reaching out.
I’m having a ctv next. These are my ultrasound results in neutral/supine
Foreanum 3mm - 200ml/min
Mid 1mm - 130ml/min (high velocity noted here)
C1 - 3mm - 130ml/min
Foreanum 3mm - 250ml/min
Mid 1.5mm - 40ml/min
C1 1mm - 40ml/min
Ml is millilitres which is exactly the same as cm. it’s just what they use in the UK
I just wanted to find out more before my neuro follow up tomorrow.
I’ve always felt there was an issue with flow due to the spaciness, swhooshing, pulsing vision, tinnitus and lots more symptoms
Really appreciate you reaching out. Thank you
That’s great to know. I’ve never had a ct scan so I’m not sure what my styloids look like. I know on my mri it looks like c1 is the culprit
Looks like you have some evidence pointing in that direction, good luck with the neuro appt! C1 can be a tricky player, very complicated anatomy attaches and passes there.
I have IJV/vagus nerve encroachment at bilateral C1 processes as well, styloidectomy on the right last August and looking to have styloidectomy on the left this September. Residual IJV scaring on the first side from the elongated styloid led to a balloon venoplasty of the IJV 6 weeks ago and that was helpful with many of the symptoms you mentioned.
I was fortunate enough to have found a neurovascular interventional radiologist with access to 3D CT with digital subtraction that took images in all head/neck positions (I was awake to do this) as well as venogram for pressure measurements throughout all arteries and veins in my neck and brain. It was a fascinating 3 hours! He will partner with my surgeon for the next styloidectomy.
Sending you every good!
I think it is my c1 compressing but maybe wrong.
Can I ask what your worse symptoms are? Mine is a feeling of a plug at the base of my head stopping flow, circulation to my brain. My brain feels numb from Lack of flow and I’m so spacey visually. Ears always blocked and popping, tinnitus. And when I stand it feels like this a flow trying to push through a pin hole and then I get so dizzy and head and feel the whooshing.
I just hope they are all connected to this issue. After 2.5 years trying to find the cause I hope I’m getting there.
Seems like you have an amazing neuro and you are in good hands?
Sorry I have just read your message properly. I had my two young children talking to me at the same time
So the balloon helped you with some symptoms? That’s amazing.
I feel any relief at this point would be a miracle
If you need a 2nd opinion, if your Neuro isn’t familiar with ES, Mr Axon at Addenbrooks is very good, he did my surgeries as I had bilateral jugular compression from ES.
Hope you get on okay, let us know how it goes
Thanks Jules. I’m actually awaiting the Ctv at Cambridge now under dr Axon. My worry is what if the jugulars are being compressed by c1 alone. Then who would help me in the uk
Your symptoms definitely have a vascular ring to them. I am so sorry for your 2.5 year medical wilderness. It takes a relentless effort to stay the course, sounds like you are well on your way! If the C1 is the primary culprit you will likely need a neurosurgeon who is willing to dive into the deep with you.
I have had a very complicated medical history including skull base CSF leak which then unmasked ES, which in turn unmasked the cerebral vascular insufficiency. My symptoms also included severe dysautonomia/ANS sx’s, severe light/sound sensitivities, altered thermal regulation, temporary urinary incontinence, vision changes/severe eye pain, ataxia…the list goes on.
I give thanks every day for having landed in my ENT’s learning curve, he is the only one out of 40+ specialist not to give up on me! I am also very grateful to say when the CSF leak is sealed, post op ES and balloon venoplasty my symptoms are greatly reduced and some are resolved. I’m still working with IIH and a fragile skullbase but there is a light to chase
Keep chasing yours
Thanks for all the help. I really appreciate it
It is a relentless journey! Not for the faint hearted that’s for sure.
Hopefully the ctv will provide some more evidence, as to what is going on.
Sounds like you have been on a hellish journey. I’m glad you see so much improvement. And yes keep chasing that light.
When I don’t sleep on my bed wedge my nose will leak Clear fluid atleast once a day. This has greatly reduced since sleeping on an incline.
I also have bad light sensitivity and day time and bright stores make me feel so spaced out and dizzy. I have bouts of bad eye pain and pulsing head pain, on the slightest move.
I have visual snow, blurred vision, ghosting at times and visual vertigo where objects appear to be breathing. Patterns play tricks on my brain.
Have you looked into a skull base CSF leak? Sounds suspiciously like one. In. My experience you must address the vascular insufficiency first. With great luck the leak will heal on it’s own, if not it will need to be address. You can direct message me if you would like.
Sorry, I missed your post about Mr Axon. There have been at least one UK member who saw Mr Axon & found there was an issue with the C1 process, Mr Axon works with another consultant, & they were managing the care between them. Sorry, I can’t remember their name though.