New here – sharing my story and CTA images

[helleborus]

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.

[helleborus]

It seems my account is not yet allowed to embed images. I will add them once this becomes possible.

[helleborus]

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.

[helleborus]

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.

[Isaiah_40_31]

@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.

[helleborus]

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.

[helleborus]

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.

[Jules]

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

[Isaiah_40_31]

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.

[helleborus]

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.

[Isaiah_40_31]

-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.

[Jules]

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

[helleborus]

Thank you very much for the comments, I and J! I wanted to update my situation a bit after a long time.

Regarding TOS, I have received a bilateral nTOS diagnosis in my home country through private physicians. The subclavian vein is intermittently compressed, but no permanent obstruction was found on ultrasound. On the right side of my neck, the external jugular vein becomes clearly visible when I am lying down and when I raise my arm to a horizontal position.

As for Eagle syndrome, I never received the response Dr. Heim had promised, despite sending him several messages. He simply went silent without any explanation. I tried to obtain written, paid medical opinions on my imaging from various sources, but the only things I managed to get were a message from Professor Sherif Sultan’s assistant stating that he had identified bilateral Eagle syndrome and that a carotid CTA would be needed in order to proceed with him, as well as a video message from Dr. Kamran Aghayev saying that a CTV is needed because my current imaging is insufficient for interpretation. Unfortunately, this information does not help me at all in my home country.

I also received a kind reply from Professor Michael Elliott’s (Australia) assistant, Ruby, and in addition I was placed on their telehealth waiting list, which is approximately 3–4 months.

Last week I also consulted a private radiologist in my home country who is said to be familiar with Eagle syndrome (and who works at the largest university hospital in Finland) and paid for an expensive second opinion on my scans. This radiologist stated that everything I asked about appears normal on my CTA images and that nothing in the scans explains my symptoms. She also questioned Professor Sultan’s expertise, particularly because Professor Sultan requested an additional carotid CTA, which, according to this radiologist, is not even performed in Finland.

In addition, I have a referral from a private general practitioner to an ENT outpatient clinic in my home country, as my voice has started to become hoarse when I speak more. The specialist I asked the referral to be addressed to is a surgeon who, to my understanding, has performed a few styloidectomies. However, since even the second domestic radiologist opinion found nothing treatable, going there feels rather pointless—perhaps he will at least examine my throat and vocal cords.

At this point, I need to obtain the additional imaging requested somewhere abroad so that I can send it to Drs. Sultan and Aghayev. (This got quite long, sorry…)

[Isaiah_40_31]

@helleborus - Never apologize for a long post. We don’t mind reading! You had a complicated story to tell.

I’m very sorry that Dr. Heim disappeared on you w/o any communication. We’ve heard from several members who’ve had that type of experience with him. I’m glad that Prof Sultan, Dr. Aghayev, & Prof Elliott’s offices all got back to you. That’s more encouraging.

Is there anyone in your area who does surgery for TOS or will you need to travel to get that taken care of as well?

@helleborus

This radiologist stated that everything I asked about appears normal on my CTA images and that nothing in the scans explains my symptoms. She also questioned Professor Sultan’s expertise, particularly because Professor Sultan requested an additional carotid CTA, which, according to this radiologist, is not even performed in Finland.

I’m a bit confused by the ragiologist’s comment that CTAs showing the carotid artery aren’t done in Finland. That doesn’t make sense since a CTA of the neck specifically looks at the arteries in the neck w/ the common carotid & internal/external carotids being the primary arteries there.

Do you have access to your CT imaging? If so, would you be able to convert it to 3D or get help doing that using either radiantviewer.com (for PCs) or Bee Dicom Viewer App (for Macs)? Sometimes the radiology clinics include 3D images along w/ the CT slices so it would be good to check for that as well. You can upload some of your images here & we can give our non-medical opinions about what we see since we know a lot more about ES than many doctors do. If you do post images, please make sure your personal information is blacked out.

I expect Prof Sultan wants to see the carotids to rule out carotid compression caused by your styloids or hyoid bone, but it’s odd he can’t see them in the CTA you’ve already had. Dr. Aghayev must be more interested in seeing if there is any internal jugular vein (IJV) compression being caused by the styloids or C1, so he’s requested a CTV which specifically looks at the veins in the neck.

@helleborus

I have a referral from a private general practitioner to an ENT outpatient clinic in my home country, as my voice has started to become hoarse when I speak more.

This could indicate that your vagus nerve is being irritated by your styloid(s) as vocal hoarseness or loss is usually connected w/ vagus nerve irritation or damage. Elongated styloids often irritate or cause compression of the vagus nerve. If you have IJV compression, the vagus nerve can also be compressed as it lives in the carotid sheath w/ the IJV & ICA (internal carotid artery). When the IJV suffers compression, the vagus nerve often does, too.

I am glad you’ll be seeing the specialist who has done a few styloidectomies. Just remember that doctors who don’t have a lot of experience with ES can be more rigid in their willingness to diagnose it as they often look for particular symptoms or a certain styloid length to be present, & if absent, the diagnosis isn’t provided. We know here that a styloid doesn’t need to be elongated to cause BIG problems. There are a number of other physical features of a styloid that can make it problematic. Also, not everyone gets the symptoms that are considered most common w/ ES so picking a few of those to be the determining factor regarding an ES diagnosis is just wrong on a doctor’s part.

Please let us know what you learn from your upcoming consult, & if you have a telehealth w/ Prof Elliott, it would be good to hear what he tells you, too.

[helleborus]

Thank you so much for your reply, Isaiah!

I think that for now I will focus only on managing the TOS side by seeing an osteopath and continuing physiotherapy exercises at home.

I have already spent quite a lot of time reviewing my images using Radiant Viewer, and I’ve shared some of them in my earlier posts here — you’ve already had time to comment on them, which I really appreciate, thank you again for that!

It’s true that my styloids are not very long, but the greater horns of my hyoid bone are quite close to the carotid arteries. The most recent radiologist dismissed that as well and said she had never even heard of such a possibility. I suspect that this radiologist was mainly questioning exactly that why the CTA I already had would not be sufficient for Professor Sultan when it comes to evaluating the carotids. I tried to ask but unfortunately never received a follow-up response from Professor Sultan’s assistant when I asked what kind of carotid imaging would be sufficient for the professor’s purposes.

I’m not placing much hope in the Finnish surgeon either — I’m even considering postponing that appointment and trying to obtain additional imaging abroad first. I’ve already sent a few inquiries to private hospitals in Istanbul regarding the required imaging, so for now I’m focusing my efforts there. It’s crazy how difficult it is to get adequate radiological imaging in my home country.

[Jules]

I’m sorry that you’ve had no help in your country and are having to look at even getting imaging abroad , that’s crazy! I’m sorry too that you’ve had to spend money getting your scan reviewed again & not got anywhere with that! It is unfortunately common for doctors who don’t know much about ES/HBS to dismiss vascular symptoms- I was told by my local hospital that it wasn’t possible for the styloids to compress the jugular veins & I had clear bilateral compression!
Good if you can manage the TOS symptoms with PT & an osteopath…
Thinking of you

[Isaiah_40_31]

@helleborus - I’m sorry I’d forgotten that you previously posted some of your imaging. I got lazy & didn’t looked back earlier in this discussion to revisit what you’ve given us to look at.

I can imagine your frustration at getting an initial response from Prof Sultan’s assistant but no follow-up when you asked for clarification about the CTA scan. Were you given any input as to whether or not his office received your CTA as it almost seems as though he didn’t have it to look at based on his request for another one?

It’s unfortunate you can’t get the imaging you want more locally & have to consider traveling to Istanbul. On the upside, it’s a good excuse to take a little vacation.