I titled it “dealing with jugular compression” because for me it’s “one” more thing to add to this sandwich. As of yesterday (Jun 23/22) I looked at what was clear-as-day jugular compression between my left styloid and C1 transverse process. I suspected it but my 2022 imaging is much clearer than my 2019 files. I will get it confirmed by a radiologist. My own health system mentioned nothing in their report. (Disclaimer: I’m in Canada).
Yes I’m thankful to have discovered it but annoyed that my own health care system isn’t catching these things after I told them all my symptoms. I have a minor health background and understand some anatomy therefore advocating for myself is “okay” but it can be daunting when talking to medical professionals, however you have to be your own advocate with this rare disease. As best you can, you have to look out for yourself.
I suspected jugular compression and now I have to read up on it.
Below is imaging I got using MIELE-LXIV and putting them together in Photoshop:
@Siren As fellow Canadian dealing with similar issue, I have to say I sympathize with you as I went through the same thing. The upside is you now have the evidence and the proof and helping other folks advocate for themselves. I can see the left jugular vein completely crushed between the styloid & C1 as you indicated. Further evidence is that collateral formation which shows in the form of dilated posterior condylar vein draining into Vertebral Venous Plexus (Cyan arrows), typical of impaired jugular vein drainage. At least your right side appears to be draining well so you might not be getting the severe symptoms that would have come if you had both IJVs compressed or dominant one compressed. My right side is hypoplastic so it is hardly draining and it is also compressed by C1. My dominant left jugular vein is compressed by the Styloid and C1, similar to yours so I get all the wonderful symptoms that come with it. half of the battle is done for you now. Wishing you all the best with the rest.
@Siren On closer scrutiny, could be my eyes or could be totally wrong since I have not looked all the CT sequences, there appears to be tiny dissection of the left vertebral artery (VA) (green arrow). This shows up as tiny separate part of the left VA since that area is only for VA, I interpreted it as small dissection (need to be verified). Do you feel vertigo/dizziness sometimes (I know this can sometimes be caused by other diseases but tiny dissection can also cause it). There is also what appears to be slight narrowing of the Jugular vein (not sure the significance of it) at the bottom (blue arrow). I am assuming this is CTV and it is taken in venous phase . Anyways, since you are good at reading CT images, you might want to see if there is dissection of the left VA. If there is, that is also significant, it might not also be symptomatic but can cause problems later. Anyways, I could be totally wrong as I sometimes over read CT scans. I thought I would mention it just in case but remains to be proven.
Green arrow pointing to what appears to be a tiny dissection of the left VA and blue arrow pointing to what appears to be slight narrowing of the left IJV (not sure the significance of this one since the compression of the styloid level is severe)
Not sure if you’ve seen this paper, but it deals with ICA compression between transverse process of C1 and styloid, as opposed to classic ES where it is just the styloid causing the issue, and it proposes a surgery to shave off some of the transverse process of C1 to reduce the compression. Of course yours is the IJV rather than the ICA, but all the same theory applies:
@KoolDude Thanks for your input. Quite honestly I would need a CT venogram/angiogram to really have a good look at the blood vessel system in my neck and head. Good luck convincing my ENT and PCP of that. This was an infused CT. I had a carotid ultrasound that said everything was normal but always get a copy of a report. If I didn’t, I wouldn’t have known of the “tortuosity of distal internal carotid arteries”. I did mention “dizziness, occasional fainting, pulsatile tinnitus, etc” to my NP, she ordered MRI of head/neck and referral to neurologist. Via the imaging intake booking system, the MRI got bumped down to only an infused neck CT, hence these new images, and that’s it. Summarizing, report said “Everything’s fine and stable”.
I see the “pinching” at the clavicle but it’s not concerning. see imagine below. What you see is the slice that doesn’t show the whole vein.
@CJsBattle Thank you, I really would need proper imaging to see what’s going on. Hopefully with this CT the radiologist might see something. I’m getting him to review what he can. I’ll see what I get from him, and if not enough info, I could ask him if he sees any carotid issues. I was trying to keep my request list short to not overwhelm him, because I would have no problem doing that!
@Siren Thanks for the response, I see the coronal better and yes, you are right there is no meaningful compression there. Sometimes though, the IJV gets compressed around at the base where it joins brachiocephalic vein.
Now that you mentioned dizziness, do you also get vertigo? Have you ever looked into the vertebral arteries? hoping what I saw was artifact but resembles a tiny dissection on the left VA. I agree with you need to get CT angiogram if they can make it dynamic, it is even better.
@KoolDude hahahahhahahhahhaha, sorry I don’t mean to sound sarcastic. -sigh- This is my plight. It took me 3 yrs to get this new infused CT. I think that answers your question about the VA. But having said that, if the radiologist sees a “there there” on the left jugular, then I feel that I have enough to say to my ENT or NP, “Hey there’s an issue, can we check the blood vessels?”. Vertigo, yes it comes and goes. In early 2021 I went to vestibular physiotherapist and she thought it was left ear nerve damage and other things going on in my life (ie. high stress from being primary caregiver, etc). However at the time, we didn’t know about my styloids. She gave me eye exercises. Not sure if they helped as the vertigo slowly went away with and without the eye exercises. Currently though I feel like I’m more clumsy and walking around in a daze.
Thanks for the article- I’ve posted it in the Research Papers Section too.
I would say though that styloidectomy is generally considered an easier procedure to do than C1 shave as far as I’m aware- not many doctors seem to do this.
Clumsy & walking round in a daze pretty much describes how I felt most of the time with bilateral jugular compression!
@Jules I’m thinking that too, getting rid of the styloid should solve the problem.
RE: walking around in la la land - been feeling like that since maybe late 2020, early 2021. Really loopy! Unfortunately the symptoms are so vague. I really do feel like the flagged hypochondriac even though I know I’m not, but I keep pushing.
Actually one of the biggest symptoms I have is heat intolerance. It can be winter or summer, doesn’t matter. If I get slightly too hot, I start feeling whoozey and shakey. If it happens on a walk, I try best I can to just. Get. Home.
Anyone with jugular compression wake up in the morning with puffiness between the jaw and neck. That’s something new that’s been happening to me lately. Looking puffy in the morning and after a few days it sometimes goes away.
@Siren same with heat intolerance. Somehow even stopped sweating most on the time. I speculate it to be due to the vagus nerve compression along the veins
It is now confirmed by the radiologist (note: that I had to pay to get a second opinion), there is stenosis on my left side. Spaces between styloid & C1 reduces to 2.5mm whereas on the right it’s 6.7mm. Also both styloids measure approx. 3.9cm bilaterally. Onwards & upwards.
I’m curious now how squished a jugular has to be to consider surgical versus pharmaceutical intervention.
Flow depends on the viscosity of the fluid and “pipe” diameter, plus a few other factors. Blood thinners, my understanding, make the blood flow easier as it less gets stuck to the walls of the blood vessels due to their lack of perfectly smooth surface.
But it can be that much, there are limits on this method, I’d guess.
Disclaimer: not a hematologist here.
Thinners help, but it’s better to address the cause, if possible, IMO…
I agree, most likely my health system will suggest thinners before any possibility of surgery. I don’t believe in throwing drugs at the problem if it can be solved by removing it. It’s not like I kept my gall bladder when it had gall stones that don’t go away and treated me with pain meds and antibiotics for the rest of my life.
I’m curious if anyone knows if stylo-jugular venous compression syndrome is based on certain criteria such as bilateral compression of both jugular veins and/or % of compression. Even though I have clear stylo-jugular symptoms on my left side, I only have compression on one side based on my recent CT scan.
@Siren My understanding (I might be wrong) that all this internal jugular vein-compression near the skull base field is very underdeveloped without clear recommendations and mostly depends on individual doctor’s/surgeon’s experience and approach…
There are research papers but they are few, and the recommendation vary.
As I wrote somewhere else, the most respected UK surgeon told me that one highly compressed/hypoplastic jugular vein might not cause any issues if there is a good network of collateral veins around on that side…
I think here unfortunately we have more subjective interpretations than objective, extensive and widely-recognised knowledge/research…