Wow @DogLover I really admire your skills in both research and imaging (all self-thought I assume). You remind me of ME . I have the same background as you (not only in symptoms ) in that I am computer scientist with many years of software engineering and architecture. I also have degree in Physics so I am bit of science enthusiast. If I go on a tangent here a bit, many folks who are not into software engineering do not realize that we play a jack of all trades, master of none when it comes to many things. I think due to working with many different software industries, if you are developing software for genetics (GENOME software), for example, you will work with geneticists in order to develop it as they are the subject matter expert but learn a lot in the process same as other industries be it financial, scientific, medical…etc. So point being, you also master googling as you are better equipped with querying it more efficiently and finding items of interest as we understand how search engines parse queries. My 7 year old daughter suffered from a rare esophageal inflammatory disease called in short form EOE (Eosinophilic Esophagitis), after years of remaining undiagnosed, Google assisted me to diagnose her based on her symptoms and subsequent upper GI scope biopsy confirmed the disease. So while you are bit impaired due to ES/BVC, do not underestimate the competitive advantage of your computer skills.
Back to the topic at hand, I think the good news is we know with some degree of accuracy, based on the imaging and post LP symptom relief, that raised intercranial pressure is at least partially responsible for your symptoms and that both IJVS and Brachiocephalic Vein Compression (BVC) have role in this. What we do not know is how much from each of these compressions is contributing to the dilated veins. With the limited images you shared so far, I am leaning towards 40% from IJVS and 60% from BVC. There are 2 reasons why I am leaning towards BVC. One all the studies I have read thus far that contained severe to near-occlusion IJVS, produced similar number of dilated collaterals that you showed us in the images you shared but your IJVS do not seem severe or near-occlusion. Secondly, the image that you just shared with us shows pretty severe stenosis of BV compared to mine (I did compare them, see below). So now your whole facial & neck veins (front & back) are dilated and god knows how many nerves/nerve exists they are compressing producing all these weird symptoms.
I believe they should shave the atlas (I trust Dr Axon & Higgins to be expert in this) since it appears to be causing most of the compression based on the limited images you shared. As far as the sternum is concerned, I really do not know what the intervention would be as I have not done a lot of research in that area and as you noted only few studies exist. I can say with confidence though, that stenting, regardless of the type of vein, carries risk of clotting as there are a number of studies linking to it and one might need to be on blood thinners for long time once stented. In your BVC case, I would stay away from it as Higgins advised also noted in this study (Crushed stents in benign left
brachiocephalic vein stenoses) that without removing the extrinsic compression, it will be crushed. I wonder if they could nudge the Aorta Arch a bit somehow without shaving the sternum I guess that is not easy since they will have to open chest wall just like the open heart surgery. Looks to me the orientation of the Aorta Arch angle is compressing it against the sternum although your sternum also seems bit thicker (don’t know if it is due to magnification here).
Here is my chest CT (Red arrow pointing to BV and Cyan Arrow pointing to Aorta Arch). Second image Aorta is not visible.
I think you have a good plan. If the surgery in March does not significantly reduce your symptoms, then BVC intervention is warranted. I know Higgins said it is years away but it is few millimeters away from total occlusion based on the image (perhaps, something to investigate when you stand up and raise your arms how that can dynamically interact with the sternum/Aorta arch movement). It could be that standing up and raising arms might be compressing it more hence all the symptoms. One hypothesis is, if we assume that IJV collapses significantly in standing up and BVC compression gets worse, then this is the double whammy that you so elegantly put that your whole body would be shot
Sorry for the long notes ( By now, everyone here knows, here comes KoolDude with his long rambling).
I am praying that your surgery goes well and that you have plan B if this does not work well. All in all things are looking good.