After one Eagles surgeon recently told me that I do *not have IJV compression and said I was not a candidate for surgery, I’ve been trying to get get a clearer idea of what is going on for the sake of my own understanding.
To be fair, a different Eagles specialist told me that I do have a compressed left jugular + need surgery. Based on my symptoms/how I generally feel, I believe whats happening in the left side of my neck/ head region is causing major issues as well. However, I would like to have more confidence about wether or not I am a good candidate for surgery. I should say, I’m not giving as much weight to the opinion of the Dr who said my symptoms aren’t being caused by ES, but having that message relayed to me without any additional context has been very disorienting.
I know there are some knowledgable members here, so though it might be worth sharing the report here. Grateful in advance for any feedback!
p.s. I’m still trying to figure out how to share my CT images as well.
Based on your report, your IJV compression appears it could be significant enough to be causing the symptoms you have.
Some doctors won’t advise surgery if the blood flow velocities in a US aren’t high enough or veinous pressures aren’t significantly increased at various points. However, we have learned here that patients can have terrible symptoms from IJV compression even in the absence of convincing pressure or flow velocities. It seems that imaging results + symptoms can sometimes be more reliable predictors of a patient’s need for surgery.
What problem are you having in trying to upload your imaging here? Maybe I/we can help give you some guidance.
So looking at the report it sounds like there’s IJV compression at C1 both sides, worse on the left? It says the right is normal but does note diminished flow! It’s understandable you’re confused! I hope that you do get clarity from another doctor, it is hard to make a decision about whether surgery is the right course for you, & makes it tougher when doctors disagree
Thankyou Jules. My left side definitely feels messed up, whereas my right side feels pretty normal so my symptoms actually line up well with this report. Yes, these surgeons seem to have very different opinions. I feel like surgery is the only way to make significant progress in my case, so I hope a surgeon that is right for me will be able to help.
That’s very validating, thankyou. I totally agree and it seems very important to not only take a variety of diagnostics into consideration but also look at how symptoms are manifesting for a patient before deciding whether surgery is the appropriate path. I guess I don’t necessarily need to share my other imaging/ I just wasn’t actually sure which screenshots of the test to share but I did figure out how to get the CT into a shareable Google drive folder at least. I’m hoping my next appointment with the nurse practitioner will also help clarify things.
In terms of compression, I find it interesting that there is a bit on the right side since I’ve been saying my right side feels totally normal for years( because of it being such contrast to the left side). If I had compression and no symptoms, I certainly would not be considering surgery! But since I feel ill in the left side of my head and face, the fact the compression is worse on that side has me strongly hoping there will be a surgical solution for this. Anyway, thanks again for the reassurance that my reports reflect what I’m feeling- I just got thrown off for a few days in terms of clarity.
I’ve been trying to get get a clearer idea of what is going on for the sake of my own understanding.