I have read different terms being used that may or may not relate to my situation. I don’t have the ‘usual’ ES symptoms of facial or ear pain or a foreign body sensation in my throat but from my 3D scans I clearly seem to have a compression of the jugular and/or cartoid and vagus nerve thru what I think is the carotid sheath as they are all in there together. On that side of my head I usually get debilitating migraines and recently have developed a ‘new’ headache all over that starts in the back of my head and neck on both sides and goes into both eyes and then the inside of my head feels like it’s going to explode like one of those watermelons wrapped with too many rubber bands. I have a lot of symptoms that could be related back to vagus nerve issues (MCAS, ME/CFS, gut disorders, POTS, constant cell danger response etc.). The neurologists where I am won’t see me or I can’t get in (southern France where it’s far worse than the US and a big shock to me). I’ve seen 2 ENTs both who either poo-pooed my symptoms as not ES or said there was only a 50/50 chance surgery would help me. I am seeing one more ENT in France that’s ‘only’ 2 hours away from me (each way) for a consult and then I have to give up on France. I’ve found a few doctors in Europe who looked at my scans and said ‘yep, come on over for surgery’ but that seemed weird to me without even consulting with me beyond an email or two AND I will have a hell of a time with French admin to get an out of country surgery covered and I am so exhausted it’s hard to function esp. if I am not SURE it will help my particular set of symptoms. I tried to tell this one ENT about the subtype of ES called ‘vascular’ and he looked at me like I had 2 heads because HE didn’t know the research. I don’t know if any ENTs here will know about the subtypes but I wondered if anyone can explain the difference between ‘jugular’ ES and ‘vascular’ ES and if you can even have ES WITHOUT the facial and throat issues. I have been working on chronic illness for a long time and know my symptoms can look like about 10 syndromes so I don’t know if my anatomy means anything. The dr. that did the 3D renderings also did an ultrasound that on the left (where no flow was shown at all of the jugular and the right side was enlarged) said the jugular was flowing the wrong way, which changed after he adjusted the C1 but I really am not sure I trust his skill in this area. He and the vascular surgeon he consults with said the venous phase on the CT needed to be held longer to see if there was actually some sort of flow on that left side. So I’m pursuing that at the end of this month but couldn’t get my GP to understand what I was talking about or write it on the prescription so I have to go to the tech and beg for it and see how that goes. I don’t speak much French. I did find a FB group in France for ES that led me to the 2 doctors near me who were very discouraging but at least I didn’t have to drive 2 hours each way for a 15 minute consult. Any insights would be appreciated. It seems I have to educate the doctors about these subtypes or it could not be ES or a subtype at all since most people with long styloids don’t have symptoms.
Here’s a link to my scans. Sorry, I didn’t know how to add them to the post. Some have been shared here before since the dr. who did the 3D rendering made a video on youtube about me.
@jteleia Let me first start by saying that I sympathize with you and can see your suffering through my own journey. We are so similar in many aspects (not only symptoms) and I will soon describe by what I mean. You need to listen to the doctors in Europe who told you to come for surgery. You DEFINTELY have Vascular Eagle (VES), the Jugular variant type and one does not have to be radiologist to spot it. These are clearly visible in your images. Anyone who is familiar with VES can see you have Vascular ES. The fact you do not have Classical ES symptoms does not preclude you from Vascular ES. You need to address this sooner rather later.
VES comes in two types, the Jugular type and the Carotid Type. I am not a doctor but you seem to have the Jugular Type based on what I can see from the shared pictures. I can’t rule out the Carotid type given the close proximity of your right styloid process to it but the video you provided which has 360 Degree rotation does not show compression of the Carotid Artery (I need to examine the whole CT in order to make sure but even that might not be sufficient if the problem is dynamic). You also have elongated styloid process on both sides and they are both compressing your jugular vein. You have dominant right Jugular vein (mine is on the left) and what appears to be non-dominant (smaller one, mine is on the right) left jugular vein. Your right jugular vein is severely compressed by the Styloid process mainly and C1 to some extent. Your left jugular vein is not visible at all, that could be due to severe compression combined with it being very small one so there is no a good signal from the CTV. It could also be an artifact of the 3D rendering but If I was to guess, I would guess it is due to severe compression + its’ small size. What does this all mean. Well it means that the symptoms you have described could be largely due to this jugular compression. Possible Vagus nerve compression as you said as well since it runs in the same carotid sheath (hence GI issues & POTS).
We are so similar that we both have one dominant jugular vein that is mostly draining our brain and if it was compressed severely, the symptoms will be similar to severe bilateral compression for the folks that have equal sized jugular veins. We are also similar in that we both have similar symptoms. I thought I was coming down with neurodegenerative diseases such as Parkinson, Alzheimer, Supranuclear Palsy (due neck pain and muscle weaknesses) …etc. BTW, jugular vein stenosis is linked to Alzheimer in some studies. I even thought I had mitochondrial diseases such as MELAS which is known to affect vision, hearing, brain and muscles. I had to get Mitochondrial genetic testing to rule it out. I also ruled out a whole host of autoimmune diseases. I even thought toxic mold was responsible because I saw an article on the internet which basically relate every symptom on the book to toxic mold (suspicious for mold to cause all of that). One of my neurologist thought I had fibromyalgia which is an abused syndrome and go-to diagnoses (not based on imaging or any other medical testing) for doctors who do not seem to have clue on this condition. So I have gone through that route and that is why a lot of ES patients do not get proper diagnoses because it can mimic a whole host of diseases not to mention the knowledge gap of most neurologists, doctors and patients alike on this condition.
Sorry for the long post but I hope you do not pursue ambiguous self-diagnoses as this can lead you away from getting the proper treatment for what can objectively be seen on your images. Those doctors in Europe who wanted to operate on you saw it and do not need another further medical workup to address it. So I say go get Styloidectomy (time tested simple procedure - nothing to fear here so long as the surgeon has done it before). Start with the right jugular vein first since that is your dominant side and see what symptoms resolve. If the right jugular vein is decompressed and opened, I am sure many of your current symptoms will disappear. Dr Axon & Higgins in London are not that far from France and are very familiar with your condition. @Jules can assist you locate them.
@KoolDude has explained about classic & vascular ES so won’t go over that (& there’s info in the Newbies Guide Section about the different symptoms). Will just say that the classic symptoms of throat pain, lump in the throat, difficulty swallowing I never had either…I did have facial pain from the Trigeminal Nerve, it just depends on the angle of the styloids as to which nerves or blood vessels they irritate, I had bilateral jugular compression too. So you can just have the vascular symptoms with ES.
Re Dr Axon at Cambridge, he does do private work through Spire Health, also does do NHS work but he seems to have his hands tied with which ES cases he can take on, plus has to do more tests before surgery than he used to- several members have waited a long time for all the tests & then might not be able to have the surgery!
I hope that you can find someone soon to help & so sorry that the French doctors haven’t worked out, sending you a hug
I just wanted to add couple of things regarding other vessels that appear to be interacting with the Styloid processes. I avoided them since the rotational video appears to be pieces cut from the rest of the 3D image. Also 3D rendering can induce artifacts so I was not sure whether to report them or not since I will need the actual CT axial slices to confirm their interaction (3D rendering can make things look as though they are touching when you increase the density) but I decided to report them though they need to be confirmed with the actual CT axial slices. Again I am not doctor, this is purely my observations based on the limited number of images you shared. You might need dynamic CT to see the full effect of the Styloid and vascular interactions since neck movement can change the touching to compression/irritation.
I still maintain that your dominant right Internal Jugular Vein (IJV) is severely compressed by the Styloid and should be your priority to decompress it. Your left IJV is bit unknown since the signal appears to disappear after C1 & Styloid level (see below for more details on this one).
A faint signal of the Left Internal Jugular Vein (IJV) which appears very small in comparison to the right one. Notice how there is bit of signal at the top (shown by the circle) but after the C1 & Styloid level, it disappears (no signal or very faint one). The interpretation of this could be a total occlusion of the left IJV by the C1 & the Styloid or It could be an artifact of the 3D rendering or some other blockage in the vein like clotting (I really do not know without examining the whole CT, it is just guess). Bottom line signal is weak and invisible after C1 & Styloid and I do not know what to make of it. Further investigation is warranted but if it is small as it appears above the C1, then even opening it up won’t do much as the right IJV appears to be the main one draining your brain the most.
Right Styloid is touching what appears to be an artery branch from the External Carotid Artery. The artery appears to be Superior Thyroid Artery (blue arrow) I could be wrong but it does appear that way. I do not know the significance of this touching. it will need to be confirmed with actual axial slices to be sure.
Left Styloid is also slightly touching what appears to be External Carotid Artery (Red Arrow). Again I do not know the significance of it and it will need to be confirmed with actual axial slices to be sure.
Just to clarify, Vascular ES is a broad term that refers to both types of vascular styloid impingement i.e. that of either the internal carotid artery (ICA) or the internal jugular vein (IJV). Thus, when you talk about Jugular ES you’re just differentiating it from Carotid ES.
Since the doctors you’ve already seen are clueless about vascular ES, you might want to print off some of the research papers about vascular ES (jugular compression in particular) which you can find links to in our Research Papers tab under the GENERAL category on the Home page (click on the green butterfly icon in the upper left of this page to get to the Home page) to take to your next appointment. Two hours each way is a long drive to come away with nothing. I hope this final doctor is willing to listen & help you.
The other critical thing to discuss w/ a doctor who may do your surgery is whether or not (s)he will be cutting your styloid back to the skull base, & especially whether the surgeon will be ensuring that the IJV is open i.e. no longer compressed, after the styloid is removed. In some cases, the transverse process of the C-1 vertebra can continue to cause some compression after styloidectomy so either the IJV needs to be slightly shifted away from C-1 (preferred “fix”) or the tp of C-1 needs to be modified to make more room for the IJV. Even more occasionally, the IJV doesn’t open up even when decompressed so a stent needs to be placed later. This is most likely to happen when the vessel has been compressed for a long time. The good news is that in many cases, the IJV does re-open enough to allow adequate blood flow which results in decreasing or complete disappearance of symptoms.
Wow. Thank you so much. You can see so much more than I can. Can you tell me what you mean by needing to see the axial slices? The dr. who did the 3D rendering in the US kept my CT diacom files unfortunately but he should still have them. I want to have another one done bc the thoracic surgeon he consults on these cases said the reason the left side may not show any flow is that the venous phase was not ‘held’ long enough to see the flow so when I go for another CT scan (a dynamic or moving one I don’t even know if they are capable of that here) I am going to ask them to hold the venous phase longer and then try to use that program you all have suggested to turn the diacom files into 3D pics myself but I won’t be able to remove the jaw etc. that Dr. M did in the US. He postulated that the huge hole in my skull on the right side where the carotid sheath goes through might have been ‘eroded’ by the pressure on it over the years and since it’s on the same side I get the migraines, it does seem like there’s a problem there, but I also get them on the left sometimes and sometimes all over my head where I want it to explode. I don’t even know if it’s possible for the skull bone to ‘erode’ from pressure but an ENT in Spain who does the surgery said it was just an anatomical difference. I don’t know if you know about that but I thought I’d add it. Dr. M said the flow on the left side was going backwards according to the ultrasound, but again not sure if he was doing it right. After the atlas AO adjustment, he said it was flowing the right way again. So yes, lack of drainage of all the waste products in my head could be why my brain is getting more and more dysfunctional, and my eyes too.
Thank you. Yes, I have a list of questions to ask on that topic. I don’t want any bits hanging about. I will try to find some research papers but if they don’t read English I can try to translate them online.
Unfortunately, the UK would cost nearly 20% more due to my money all being USD so I haven’t pursued it. The one I feel most sure of would be the guy in Germany I have corresponded with based on other people mentioning him. But again, dealing with French admin makes me want to cry and I just don’t have the money to pay out of pocket.
A doctor I consulted in Barcelona, also 2 hours from me, said that anatomical differences are common AND he poo-pooed the idea that the right jugular was pinched b/c he said the size of it below the c1 was also enlarged. I can see his point but if the left isn’t draining, it’s gotta try to go somewhere but a pinched hose does have reduced flow after the pinch so what do you make of that comment?
@jteleia you are welcome. What I mean by axial is the raw CT images that are generated by rotating your body around its axis (90 degree) to the body. Simply put, it is the raw CT images, not the 3D rendered ones. 3D rendering can make organs touch each other (like vessel and bone) without them truly touching so it is less reliable than the actual raw CT slices. This is because the tissue size and the appearance of 3D images depends on the volume rendering intensity you choose (you can make them transparent by reducing the intensity or make them opaque by increasing it so this can introduce artifacts that may not exist in reality so any contact you observe should be confirmed with the raw CT slices).
You can use this tutorial to teach you how to remove body parts such as the jaw as you asked if you intend to use the free 3D slicer software (Making Your Own 3D Images from CT Scan- 3D Slicer Tutorial - #4 by SnappleofDiscord)
Well I am not a doctor and certainly did not examine your CT to speculate what can cause it and frankly should be leaving it to doctors since it is their area of expertise. If the doctor thinks it is pressure that created the skull hole, then I think you should have asked him whether a compression/narrowing of the the right Jugular vein just below the skull by the Styloid process/C1 could have contributed the pressure build around the skull entry. That would have been significant indicator of why the blood is pooling around the skull entry. I, however, know that pressure (force applied on an area) can erode any material and the rate it erodes depends on the makeup of the material being eroded and the size and the duration of the pressure applied (this is from science perspective, not medical one).
Well again if Dr M said the blood was going backwards, you should have asked him what that means. When you said left side, I take it you mean the left internal jugular vein and if that is the case, then, does it mean because it is occluded/obstructed/compressed so that the blood has no choice but to flow backward (retrograde bloodflow is usually a sign of the vessel being occluded). I would ask all these questions. I hope I answered all your questions here.
We have had other members w/ IJV compression who had an IJV that was enlarged above & below the area of compression so that’s not uncommon. In the few cases where a post op scan was discussed here, the IJV size did normalize to a good extent once the compression was relieved.
Thanks again for the additional link to the 3D tool. I get another CT scan today and will ask them to hold the venous phase part longer as Dr. M. was told by the vascular surgeon needed to be done. We’ll see if they understand what I mean.
When you say you needed the raw CT images, do you mean the diacom files of the other CT scan? I unfortunately was not given back my disk at Dr. M and I didn’t copy them somehow. I don’t think I have access to them. I will have a new set after today’s scan.
good to know! thx
Yes, I mean the actual dicom files. It is even better if you have more recent ones.
Well, CT scan done, but cannot get the 3D image to work right. I left a message on the forum with the tutorial. My husband has been at it for 2 days and is doing everything right but ultimately the problem is that one of the series/studies does NOT show up in the list or drop down entry (after we open the eye) even though it is in the initial list of the uploaded files. Of course, it’s the critical one. We can get a 3D image of the top half of my skull on another study/series but of that’s not what I want to see most. Can anyone advise or can I send you the files and see if you can do it? I have a lot riding on this information b/c the radiologist said my veins and arteries are fine even though 10 months ago a 3D rendering done by Dr. Middleton showed a very significant problem on both sides. I was quite distraught when the radiologist basically said, ‘you’re fine’ and hustled away from me so I couldn’t ask any questions like did he look at my prior scan or show him the 3D images I had from the last scan showing the problem.
Pic2.docx (546 KB)
@jteleia I really do not know what you guys did but the reason why it does not show up (at least according to this screenshot) is because you have not selected the study to render (TF H ANGIO TSA) in the “volume” field at the top right hand corner on the screen below (see the red circle). You then need to choose select a “preset” to get different preset rendering (see the red arrow) in the image below. Just follow the tutorial from 5 to 8 , starting with 5. Render the volumes of your images.(Making Your Own 3D Images from CT Scan- 3D Slicer Tutorial - #4 by SnappleofDiscord ). If you follow this, it should capture most of what you need to render the image in 3D.
If you want me to take a look at the imaging, I do not mind if you upload it in this anonymous sharing site (https://www.dicomlibrary.com/). The site has quick intro on how to upload & share dicom images. It also strips personal info before uploading so it is completely anonymous. Warning…it might take long to upload if you have slow connection and the number of studies are huge such as this one (TF H ANGIO TSA) which is 1122 slices. Any other way, you can share is ok too.
I think this pic didn’t show up for you. The problem seems to be that we don’t find the right series ( TF H ANGIO TSA ) in that drop down menu at all. It disappears between the first picture I sent and this one that I have tried to attach here. I will also try to send the zip file to that file uploader. Thank you!
can’t get past step one in the sharing site. I click on the zip file once I have clicked on the ‘select a diacom file or zip’ and nothing happens. Watched the video but can’t get past this step so it’s not useful.
I did get some 3D images with the other viewer someone told me about, RadiAnt. It is soooo much easier to use. I hope you’ll put it on your website. I appear to have the same issues as last year despite attempts to get the C1 out of the way. No visible flow on the left side at all and big jugular on the right. I couldn’t manipulate the progam as well as Dr. M b/c he uses a better one so I can’t say for sure that there is compression. I’ll upload some saved shots I have from it. I sure hope the ENT can tell something b/c the radiologist was like others’–‘you’re fine!’ I don’t think they know what to look for. Thanks again.