That makes sense!
Have you ever been investigated for May-Thurner syndrome, or other vascular issues of the lower extremities? Just looking at the color contrast between your legs and arms, it looks like there is lack of blood in your legs? I wonder if laying down opens up the pelvis and alleviates blood congestion in the veins of the upper body? I don’t know much about May-Thurner syndrome or similar lower body vascular issues so this a total shot in the dark
These photos were meant to highlight the upper extremity congestion and discoloration, which is the issue my doctors have also noted. My legs are normal in color, and nothing suggests May–Thurner in my case. Both my PCP and Stanford neurosurgeon have documented vascular congestion, consistent with styloid/C1 involvement. I just wanted to share the visible changes for members who might wonder if these things can be seen externally, because they can.”
Oh gotcha!
@MGORNEAU - We’ve had a few other members who had limb discoloration similar to yours but it’s been a few years ago. It was being caused by the vascular tissues the styloids were compressing & resolved pretty well once the styloids were resected as well as the associated numbness some of them also had. I think having a styloidectomy & IJV decompression on one or both sides will help reduce or eliminate the odd vascular symptoms & neck “engorgement” you’re experiencing.
That’s really helpful to hear and reassuring to know others had similar vascular symptoms that improved after surgery. It gives me hope that once the compression is properly addressed, the discoloration and jugular congestion will improve as well. I also have numbness on the right side of my face and down my neck, so it really stands out to hear that others had this and saw improvement after styloidectomy and IJV decompression. I appreciate you sharing that perspective, it’s good to know I’m not alone in these symptoms.
Aside from all the vascular symptoms which have been discussed, it sounds like you have plenty of other ES symptoms which will hopefully resolve with surgery- weakness & shoulder pain can be spinal accessory nerve irritation, BP changes & light headedness could be vascular but can also be vagus nerve related, nerve pain, numbness & tongue tingling could be the facial nerve, trigeminal nerve & hypoglossal nerve which are all commonly affected. Pain in the back of the head can sometimes be collateral veins compressing the occipital nerve too…
Thank you, Jules, that really helps connect the dots. I definitely experience the nerve-related symptoms you mentioned; those came first, and over time the vascular issues started gradually and are now quite debilitating. It’s validating to hear how they can overlap in ES. It gives me hope that after addressing the styloids I can start living again and not just existing. After six years of heavily advocating within the medical community, I want this fixed yesterday, having to wait is really hard to compartmentalize. I suspect I am not alone in feeling this way.
You are among friends here who have gone through & are going through very similar struggles that you are @MGORNEAU. We’re really glad you’re here & we can support & encourage you. 
That means a lot. It’s been a long, painful, and exhausting road, and knowing there are others here who understand makes a real difference. I’m grateful for the support and encouragement, and I hope what I’ve shared can also shed some light on what others may be experiencing. I consistently feel like I won’t make it another day, yet somehow I do. From reading other posts I know I’m not alone in this.
I had a similar experience with ES; it was the nerve pain which came first & it was because of that pain I was diagnosed , but the vascular symptoms came later. Mine got worse to the point where I was feeling quite rough & had some strange, scary symptoms, so I was really glad to have the surgery. I can sympathise with your frustration at waiting (our waiting times are pretty long in the UK!), but although we might feel rough, as @Ifrit said in another post, ES is very rarely life threatening, so it’s a matter of finding things which help you cope with the wait. But we definitely understand
Thank you for sharing your experience, I’m so glad you found resolution! I am really looking forward to that too.
Likely, since you have not seen doctor yet and/or the scan is from outside hospital system, you get no reportable information attached to the scan. But, the doctor would not schedule appointment if they saw nothing on your scans that they could fix.
Dr. Nakaji sent me to another physician in another state for “diagnostics” and mentioned my insurance as being difficult to work with. I am assuming you have insurance that he likes, since he is ready to do surgery. It is too bad that insurance dictates care for some of us. Let us know how it goes if you do have surgery.
@jobby99- a couple things.
I’m Canadian so I was going to be paying out of pocket for surgery with Cognetti.
Fortunately, I am now getting the surgery at home in Canada free of charge.
Hi there
Who is doing your surgery in Canada ?
Toronto?
I too am in Canada 
@Bmmac I’m from Nova Scotia. Getting left styloidectomy and left greater horn resection in November in Halifax.
This is good news. I am assuming your c2 transverse process is not involved.
Are you thinking both sides?
C2 transverse process is very rarely involved in IJV compression - I’m guessing you mean C1 tranverse process (which very commonly compresses the IJV)?
It’s hard to say how much C1 is contributing to my compression, but I suspect that once the styloid(s) are out my IJV(s) will be able to breath. I’ll only get my right side done if my left side doesn’t result in me being symptom free
Yes C1. Process…I was not aware anyone in Canada was treating the C1 except maybe Radovanovic in Toronto.
So glad you were able to get someone in Canada closer to you.
November is surgery date?
@Bmmac just to clarify, I am not getting a C1 shave! Just a left styloidectomy and left greater horn resection
And yes, November surgery!