Thank you for letting me join the group! I am a grandmother approaching 60 years of age, with so far only my own suspicion of Eagle syndrome. One radiologist has also suggested that my symptoms could be consistent with this and recommended further imaging.
I trained as a radiographer when I was young, but I only worked in the profession for about a year after graduating. I was unable to access a public physician for my symptoms in my home country, so I sought private imaging: a brain MRI/MRA/MRV without contrast, mainly to rule out more serious causes of persistent headaches and pulsatile tinnitus that started about six months ago. The tinnitus is synchronous with my heartbeat, is present in both ears when lying down, and I sometimes also feel pulsations in the occipital area. The pulsatile tinnitus stops with the Valsalva maneuver and also if I push my lower jaw forward as far as I can.
The imaging was reported as normal, except for a mildly narrowed left internal jugular vein (IJV). I have a long history of chronic migraine that no longer responds to preventive medications, and more recently my headaches have partly become positional, with lying on my back being the worst position. I also have mild bilateral thoracic outlet–type symptoms.
A private ENT resident I consulted told me that I simply need to learn to live with the pulsatile tinnitus. Later, a public primary care physician referred me to specialist care, where a head and neck arterial-phase CTA was performed and found to be normal. According to the neurologist, the veins are simply of a type that reacts to breathing and body position.
I sent my CTA images to Nils Heim in Germany for a second opinion, but I have not yet received a response. I am therefore posting selected image slices here under my first post for review by the kind and supportive lay members of this group (fully aware that this is not a medical evaluation), as I am beginning to wonder whether I might be completely mistaken and on the wrong track.
The first three images are axial CTA slices in which the contrast agent fills the IJVs only weakly, while the arteries are clearly opacified. The right IJV (long arrow in the first image) appears to me slightly flattened between the styloid process and the skull base compared to the left side. I have marked the styloid processes with short arrows. In another attached image, the IJV is positioned between a bend of the ICA and the C1 vertebra (my ICAs were noted to be quite tortuous on imaging). In the third image, the left IJV appears to be compressed slightly again, lower down, between a muscle and a bend of the ICA.
These two 3D reconstruction images show the close proximity of the right external carotid artery (ECA) and the styloid process. There is no compression, at least in the CTA imaging position, but mechanical irritation might occur with head rotation (upper neck pain decreases when I try to avoid turning my head a lot). The left ICA and styloid are located quite close to each other too.
@helleborus - Very nice images! I agree w/ everything you’ve said about what you’ve seen. Your training as a radiographer has stuck with you in spite of so many years “out of practice”.
Your ICAs do look tortuous. I think we’ve had a few members w/ tortuous ICAs which caused them to be involved in IJV compression, but there are other vascular tissues that can also cause compression. You noted possible muscular compression of your left IJV further away from the skull base. The SCM, posterior digastric & sometimes some of the smaller neck muscles have also been implicated.
The fact that you have bilateral pulsatile tinnitus & increasing symptoms caused by particular head positions does sound like you may have more significant IJV compression than your imaging shows. With your ECAs so close to your styloids, it’s likely they’re being irritated w/ particular head positions as well & thus contributing to your symptoms.
Your styloids are longer than normal, & the right one is particularly thick. Have you considered having a dynamic CTA/CTV scan to look at your IJVs & carotids with your head in other positions than neutral? That type of scan would possibly be more helpful in identifying compressions & what is causing them.
Isaiah, thank you so much for your kind reply and for taking the time to review my images. It does feel reassuring when someone else sees the same things that I do.
In addition to the reporting radiologist, my CTA images were also reviewed in a radiology meeting at my local central hospital (which was my former workplace back in 1997). All of the radiologists felt that there was nothing outside normal variation visible in the images. The only finding they agreed on was elongated ICAs, which were considered a normal anatomical variant. The neurologist also emphasized this during a phone call, telling me that the scans had now been reviewed by several pairs of eyes and that nothing concerning was seen. This was despite the fact that I had already shared some of the same selected images with them, specifically asking that those areas be looked at more closely.
Unfortunately, obtaining additional imaging in my home country can be difficult, even in the private sector. We have a national electronic health record system where imaging reports are shared between public and private healthcare providers, and once MRI and CTA studies have been interpreted as normal, further scans are not easily pursued. Dynamic CT imaging (which indeed as you suggested would be good to have) is only performed by special request and is not part of routine practice here, although I am open to traveling abroad if that becomes necessary.
At this point I’m still unsure about the best next steps, and both identifying the right place and traveling farther feel a bit challenging — but I’m continuing to look into options.
Here are a few more 3D images and an MIP reconstruction showing what appears to me to be an unusual venous finding on the right side, although this was not mentioned in the radiology report. These vessels may represent collateral veins, and it raises the possibility of a venous component of thoracic outlet syndrome in addition to the more classical neurogenic TOS, even though my arm and shoulder symptoms are relatively mild and something I have largely set aside.
I do agree with @Isaiah_40_31 yourself with what you see in the images…
If you don’t get a good answer from DR Heim, you could ask for an evaluation by Kjetil Larsen at MSK Neurology: Home - MSK Neurology
He’s spotted things on imaging that many doctors miss… But it does sound like it’s going to be hard getting anywhere in your country, which is frustrating for you… There are some medications which can help with IJV symptoms & some supplements which a few members have tried (as well as sleeping propped up which I’m sure you know already), so here’s a link to the info: ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Unfortunately, doctors seem to miss, or discount as being insignificant, things we see that do seem significant. The odd vascularization on your right side does look concerning. It’s too bad it wasn’t addressed when you were in for your consult & that you had to find it yourself after the fact. Can you get another appointment for a secondary review? From what you’ve said that sounds like it may be quite difficult to accomplish.
I hope Dr. Heim is more helpful. If you do consult with him, point out what you’ve highlighted in the three images above & ask his opinion about that if he doesn’t bring it up on his own. As @Jules mentioned, sending your imaging to Kjetil Larsen could also give you some answers.
Thank you, Jules, for your comment and helpful suggestions — I really appreciate them. And thank you very much again as well, Isaiah.
Today has been another headache day (and also a very cold one, –18 °C), which has given me a bit too much time to think and feel discouraged about the current state of healthcare in my home country. I may still be able to tolerate one more attempt at seeing a private physician here regarding the TOS aspect, as doctors familiar with TOS should be easier to find in Finland than those familiar with Eagle syndrome or IJV compression.
At my neurology appointment I did not mention my TOS-related symptoms, as there were other issues to address, and I probably already took more time than was scheduled. However, after noticing this venous cluster in the 3D reconstructions in RadiAnt, I did send images of it to the reporting radiologist and asked for an assessment. When the neurologist later called me, he only referred to normal venous behavior, and the formation was not considered concerning — even though it looks quite striking to me and not something I would personally regard as normal. For that reason, I may still try to present these images to a physician familiar with TOS.
I have previously read material on the MSK Neurology website that Jules suggested — there is a lot of good information there, and I will definitely keep it in mind. I have also sent Dr. Heim (Medizinberatung Heim) some 3D and MIP images of this venous formation in addition to the full CTA DICOM files. I very much hope he might recommend some further investigations. I’m not sure how much weight his opinion would carry here in my home country, but perhaps it could help me access imaging in Poland or Germany. It is also possible that Dr. Heim could point me toward a knowledgeable physician or imaging center in Germany.
Somehow it feels like I can’t simply let this go, but I’m trying to take things one step at a time. I just need to gather a bit more strength and clarity before continuing to look for further answers and the right kind of help.
-18º C is cold, @helleborus! I also live in an area that typically has very cold winters, but there’s a warm current flowing in the Pacific Ocean off the West Coast of the US that is causing torrential rain in the coastal states & much warmer weather than normal further inland (we’re in the midwest).
I’m sorry that you’ve had such a headache today. I hope it is reduced tomorrow. I think we’ve mentioned trying to sleep with your head elevated at night. You may need to experiment with how much elevation helps the most. Icing your neck may help, too, though that probably doesn’t sound pleasant with the temperatures being so cold outside.
I also hope Dr. Heim will be more thorough in looking at your imaging & can comment on the venous cluster more than just saying it’s normal.
Hopefully you’ll find a good TOS doctor in your area to help you. That would be a step in a positive direction for you. Please let us know if you do & what you learn from Dr. Heim.
I would hate to be that cold @helleborus ! We have snow here & it’s not been above freezing here, -5 overnight, that’s bad enough, a nice hot chocolate has kept me going! I always found the ES symptoms & neck pain were worse with the cold, I think getting shivery & tensed up made it all flare…
It sounds like it’s going to be a battle for you to get treatment, so gathering your strength sounds like a good plan, no rush, get yourself in the right place mentally. We’ve had lots of members in similar situations, and many who’ve fought for help and been able to get surgery, so it is possible. Sending you a hug
