Hello from Kiel, Germany. I suspect that I have Eagle Syndrome. I have several symptoms and have been diagnosed with Thoracic Outlet Syndrome. This alone cost me 12 years during which doctors always treated me psychologically, and I was in psychiatry with pain in my hand, arm, and much more. Doctors say I should apply cream to my hand. Now, however, I have the diagnosis.
Regarding the suspicion of Eagle Syndrome: In the past, I had dizziness and always problems with my ears. Among other things, tinnitus and several hearing losses; also, my eardrum sounds like paper when I move my ear. I often have pain in my ear and jaw, especially when I have to talk more. I have hoarseness every day. I could list even more.
I don’t have a CT yet, also because I don’t dare to talk to my doctor about it, who hardly takes me seriously despite the TOS diagnosis. I have an MRA and believe I see the Eagle and a compression of the jugular vein. I am curious about your opinions. Thank you.
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!
Thank you so much. It’s really good to hear that I’m not just crazy! I have a TOS doctor, and we are working conservatively for now. However, TOS doesn’t fully explain many of my symptoms. I have compression of the IJV on both sides, if I’m reading the images correctly. That could explain some symptoms. Is there an explanation of how TOS and ES are connected? Is something like EDS related to this? You mentioned that some people benefited from TOS surgery. I would tend to address the Eagle first because both veins are compressed, and I think that could cause problems, possibly increased pressure in the head. My symptoms suggest that. I will make an appointment with an ES doctor. Thank you, thank you!
@Framussen - Dr. Heim is one of the doctors on our list for Germany, & he is very experienced with ES so would be a good doctor for you to see. He stopped doing ES surgery when he opened a private practice a year or more ago, but he’s apparently planning to start doing them again this year.
ES/TOS together are sometimes seen w/ EDS but not always. If you have other symptoms of EDS, it would be worthwhile looking into it.
We don’t know if or how they’re connected, but do see quite a few members with TOS as well as ES, & other vascular compression syndromes too like Nutcracker & May Thurner! There have been links with EDS, the thinking with that is that because ligaments are lax, the body lays down extra calcium in the neck to try & stabilise it…I’m sure all these syndromes are far more common than doctors realise, & because of more testing available & Google so people can do their own research, more are getting diagnosed!
Thank you very much for the information. It is very difficult to find doctors and make progress. I would like it to go faster.
I have evaluated my images myself and have already seen that the nutcracker phenomenon is visible in the MRI. However, I do not have any symptoms. I also have a pectus excavatum that was operated on when I was a child. Considering these factors, I have been thinking about EDS since the TOS diagnosis. A childhood fear is coming true. Dr. Heim has become self-employed and now offers consultations for a fee. It costs 330 euros for a consultation. He is not performing surgeries at the moment, as far as I know. I contacted Dr. Martini, who said I probably also need a neurosurgeon because of the first cervical vertebra. But this can only be definitively determined with a CT scan. So, thank you again. Your initial confirmation has moved things forward.
Let us know how you get on, I hope that you don’t have to wait too long for a CT, & I’m sorry that you have other issues going on as well, good that you don’t have symptoms of Nutcracker…
Welcome, Framussen. That all sounds very interesting! Isaiah & Jules - their comments are very shrewd and knowledgeable, so hope their thoughts can help you get to the bottom of exactly what is causing what. All I know is what you already know, about a CT-with-contrast scan being needed for starters! Good Luck & look forward to hearing how you get on
Hey, I’m sorry to hear of your struggles. I’m a bit foggy headed right now so can’t go into too much depth with help right now, but there are two highly interesting studies that I think of when I read your story and symptoms. One recently done by John Hopkins and it came out about 3 weeks ago, the other was done by a very impressive MSK specialist called Kjetil Larsen in 2020. He has a website called MSK neurology and I highly recommend looking at his articles section on TOS and jugular/eagles stuff - lots of reading, but highly worth it.
