I am reaching out because I am feeling completely stuck after trying everything. I am currently being evaluated for suspected Eagle Syndrome (specifically the vascular/jugular variant).
I recently had a brief video consultation with Dr. Kamran Aghayev. He requested that I get a specific scan done: a CT Angiogram (CTA) focusing on the internal jugular vein (IVJ / Vena jugularis interna) with a proper venous phase.
My problem: I have already called and emailed countless radiology practices and clinics across Germany, and every single one of them turned me down. They all state they do not perform this specific venous imaging protocol for Eagle Syndrome.
Dr. Aghayev suggested that I could fly out to see him in Istanbul to get the scan done. However, this would cost me well over €1,000 and a massive amount of physical energy. What makes it so frustrating is that during our call, he couldn’t even give me an estimate of how likely it is that I actually have this condition. Taking on this huge burden feels like a total shot in the dark.
Because navigating the standard medical system here is so difficult for custom scans, I am fully willing to pay out-of-pocket as a self-paying patient.
My questions for you:
Has anyone successfully managed to get this specific IVJ CT Angiogram / CT Venography done in Germany? If so, at which clinic or practice?
@Sunshine - We have a number of other members who live in your country so I hope one of them can let you know if there is a place you can get a CTV (CT scan w/ venous phase imaging) which is another name for what Dr. Aghayev wants. I am shocked if there is no radiology clinic that does this as it’s not an unusual procedure. Hopefully you’ll get answers back withgood information to help you.
Thank you for your reply. I hope someone gets back to me, and maybe one of the clinics or practices will still get back to me after all. =) Thank you for your support!
I’ve had a look at the past discussions, and can’t see any mention, have you tried any of the clinics that the doctors on our list work from, whether they might be able to recommend a radiology dept? @TheDude had IV compression, he had initial surgery in Germany but then had to travel to the US for a revision surgery, so he may have had imaging done there? You can send him a private message if he doesn’t see this…
"Thanks @Jules, I actually messaged The Dude about it. No reply yet So, I can actually get a CT scan with IVJ angiography in a neutral position done this Tuesday as a self-paying patient at a private clinic. That took quite a lot of energy .. Do you know that feeling of being afraid that they won’t find anything..? Because otherwise, I have no idea anymore where my condition is coming from, which is getting more and more intense.. It was a strange experience with Prof. Dr. Kamran Aghayev he called via video call, blinked at my CT images for about 30 seconds, and immediately said.. if it’s not vein compression, the other things can’t cause the symptoms.. It was just a strange feeling … that’s still lingering with me
I’m sorry that your appointment w/ Dr. Aghayev wasn’t more satisfying, @Sunshine! It’s unusual that he wouldn’t have scrolled through your CT images & discussed them with you.
I think you should take the appointment on Tues. because even in a neutral head position, IJV compression is usually obvious. It’s just that it can become more extreme in other head positions. I do understand the fear that the imaging might not confirm what we/you think your diagnosis most likely is, but there’s no way to know unless you go through with the imaging. I will say a prayer today that the imaging will be very helpful in diagnosing the cause of your symptoms.
I definitely understand that worry when you’re getting symptoms that the testing won’t show what the issue is
I’m not sure if I’m remembering right, but I think it might have been mentioned that he does a quick initial consultation, and then a longer one later? Maybe some of the members who’ve had consultations with him can comment…
I’m sorry that you’ve had to pay to get the testing done, but praying it shows the issue, let us know how you get on
@Sunshine I will be praying that the imaging you will be having done on Tuesday is revealing. Don’t get despondent if the radiologist note nothing, it does not mean there is nothing. Is Dr. Aghayev going to review the imaging on Tuesday with you? If able maybe upload some images so @Jules and @Isaiah_40_31 can give you their thoughts before hand, so you can have questions ready if they are not addressed without prompting.
Thank you so, so much, this means a lot to me. You know, for the past few days, I’ve been feeling much better. I think that since my last osteopathy session on Friday, my craniosacral system is finally back in position. Sometimes I also feel like I might have had undetected BPPV (benign paroxysmal positional vertigo) for weeks, which might be gone now.
I just really hope they find something, even if my symptoms might not be there on Tuesday and my atlas is in a good position. This permanent tension and overthinking for more than 8 years is so exhausting.
I will definitely try to take screenshots for you and keep you updated as soon as I get feedback from either Dr. Martini or Dr. Aghayev.
I’m so glad you’re feeling better, @Sunshine! What a difference a reprieve from symptoms can make!! I hope they stay gone for quite a while. It’s unfortunate that ES symptoms come & go like they do, but sometimes they do stay away for quite a while.
I wanted to share a quick update with you all. I’ve finally found someone who was able to evaluate my CT scans, and the wonderful Wendy Scheib took the time to look through some screenshots of my imaging.
Her analysis has been a huge relief—it’s so good to finally have an idea of what’s going on. It turns out I do have IJV compression, worse on the right than on the left, which seems to be caused by the transverse processes of my C1 vertebra along with calcified stylohyoid ligaments.
I wanted to share these images with you all, as I know how helpful it is to see these examples. A massive thank you to Wendy for her support and for helping me understand these findings—her insights have given me a lot of hope when I was really starting to lose it.
I’m currently in a pain clinic in Germany, dealing with some other issues like lower back osteoarthritis, but I’m hoping to navigate the treatment there while keeping these new findings in mind.
Thank you all for being such a supportive community!
She is a star helping you out! You certainly have alot of calcifications going on there with your styloid, ligaments and the hyoid! And the thyroid cartilage to…
So, I can actually get a CT scan with IVJ angiography in a neutral position done this Tuesday as a self-paying patient at a private clinic. That took quite a lot of energy 
.. Do you know that feeling of being afraid that they won’t find anything..? Because otherwise, I have no idea anymore where my condition is coming from, which is getting more and more intense.. It was a strange experience with Prof. Dr. Kamran Aghayev he called via video call, blinked at my CT images for about 30 seconds, and immediately said.. if it’s not vein compression, the other things can’t cause the symptoms.. It was just a strange feeling … that’s still lingering with me 
