Hi & welcome to the forum! I’m sorry that you’ve been misdiagnosed & not believed by doctors for so long, sadly we see that quite often here…
You’ve done a good job diagnosing yourself & annotating your images! I agree to that from what you can see on the x-ray that your styloids look a bit longer than average, potentially quite wide at the skull base end & certainly angled, which can cause issues even if the styloids aren’t that long. In the first image, I agree that it looks like there’s IJV compression, but it looks as if the C1 vertebral process is causing the compression- we’ve seen that more often on here now. Sometimes removing the styloids can create more space & help the IJV to open up, sometimes it’s not enough & the C1 process needs shaving too…
I think looking at these images & given your symptoms it’s certainly worth pursuing an ES diagnosis, if you can persuade your doctor. We’ve had several members who have TOS as well as ES; some have had the TOS surgery first and that’s helped, others the ES surgery. Are you able to get the TOS surgery, or is it hard to get the doctors to agree to it?
We have a list of doctors familiar with ES, there are a few in Germany, so maybe you could get a referral to one? Here’s a link:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
I hope that you can get some help!
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