Hello, thanks a lot for the warm welcome via email. So I want to also share my story (I’ll try to keep it short and structured :-))
Symptoms:
Since 3 years I am facing heavy dizziness on daily base, my whole life feels like in clouds. Brain fog, vertigo and many more symptoms developed over the time. TMJ and Neck problems also increased. But still, the 24/7 dizziness is by far the worst. Since day one I describe the feeling like not enough blood getting into my brain, like not really being present.
Diagnoses:
I saw a lot of doctors without getting a result and by accident I stumbled over the eagle syndrome as part of my own research. My doctor didn’t took my assumption serious, so I paid the CT on my own, and here we go. Both sides about 4cm, but especially the left styloid was very near to the TP of C1 (2-3mm). And as the Vein compression matched my symptoms to 100% I was very happy to get those bad boys removed to get back to life.
Surgery:
So 1st of March this year I was finally scheduled in Bonn, Germany to get my left styloid removed, everything went smooth, also I was told the IJV is now free. Unfortunately the symptoms did not improve till now, so I decided to go for another CT including contrasts to show the vessels.
The left IJV is still compressed to 2,5mm. This time the report says it’s compressed by TP of C1 and muscle structures (don’t know how they can tell that from a CTV, I thought it only shows bony structures).
Questions/Notes:
- I am searching for people having the same problem, surgery did not help to uncompress the IJV
- Does anyone know which muscle might be the problem here (is it the SCM?), I am not sure how to work on it, and if it makes sense at all. Or is maybe C1 moved to the front, caused by bad posture?
- Besides that I also have slighter compression on the right side, which seems to be the thicker vessel in comparison to the left side. What do you think, would a surgery make sense here?
- I added also a picture in category “Others” showing some blood vessels behind C1. Those are not present on the other side. Do you think by body tries to workaround the compression here?
My problem is that the surgeon I went to is in fatherhood for the next 2 months, and nobody else is willing to give me any feedback. I know we are also no doctors here, but having some conversations/discussions always helps
Thanks for running this forum, it’s awesome to discuss with people being in the same boat.
Pictures:
I am somehow not able to add media attachments, will add them when I figured it out how