My long journey to diagnoses of Jugular Vein Compression by Styloid & C1

WOW, KoolDude!

That’s a lot of imaging & I applaud you :clap: :clap: :clap: for your resourcefulness in learning how to read them. You’ve inspired me. I’m pretty good w/ 3D images but am a bit lost on all the other scan images (thanks for the arrows & subtitles on some images, BTW). You are in good company here as we have several current members from Ontario & other provinces who are in the same situation as you are regarding finding a doctor to do surgery. You can use the magnifying glass icon to search for posts by @Tomas10 & @bmcdiddie in particular.

Your journey has been long & I’m very sorry for the level of debilitation you’ve suffered. Again, being proactive has brought you this far. Your symptoms i.e. visual & hearing changes plus significant brain fog are a common theme among our IJV compressed ES members here. Many don’t have the advanced symptoms you do but still have similar complaints. As I type this, one of our executive directors who is Canadian is going to bat w/ the medical community on behalf of our Canadian members who have ES. Since her efforts are just beginning, it will likely take some time to see the results. In the meantime, if you were to come to the US for surgery, Dr. Hepworth in Denver, CO, is our most knowledgeable vascular ES surgeon. Sadly, he isn’t taking new patients until next year so a call to him now would be fruitless. Dr. Cognetti and Dr. Newman, both in Philadelphia, PA, & Dr. Hackman in Charlotte, NC, are all very experienced as well so you could try contacting any of them to find out if they feel they can help you.

Shaving C-1 is another story, however. There are very few surgeons in the US who do that as it can create some cranio-cervical instability. Often just getting the styloid removed & taking that pressure off the IJV allows the IJV to open enough to allow increased blood drainage from the brain. That in turn allows for healing of symptoms over time. It is not a quick fix & can take months & up to a year or more to realize the full results of a styloidectomy.

I do agree, in your case, that it’s not the length of your styloids but how thick they are that is causing your troubles. Unfortunately, even some of the best surgeons on our list base their decision about doing surgery on styloid length alone w/o considering the other features of a problematic styloid. This is not to discourage you but to give you a heads up if you do contact doctors here & are turned away. The answer is NEVER SURRENDER & NEVER GIVE UP!

https://forum.livingwitheagle.org/t/doctor-lists-no-discussion/10245/5

:hugs:

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