Hey all - my name is Eddie, and I’m about 5 months in to my head / neck structure issue investigation. I posted several months ago and finally did get around to getting a CTA/CTV done. I also had a DMX and MRIs done recently. I have confirmed CCI, but my chiro’s initial suspicion was ES after his xryas, and I do have a lot of vascular ES compression symptoms.
I am absolutely hopeless at interpreting these imaging in the free software you all have mentioned. I am wondering if there’s a kind soul who could run my raw data (DICOM files) through software and give me a sense of what could be going on. I see @TML has been willing to do this for others… so I’d be really thankful as well! Eddie Medical Records - Google Drive (set to “view only” for anyone with the link. I’ve got nothing to hide lol)
My story: symptoms started suddenly four years ago with no obvious explanation. Here’s what i have currently:
head pressure at the back of head / base of skull: Extreme - for four years, i have constantly been rubbing and massaging the back of my head. it feels like somebody tied a knot back there and fluid cannot get in / out.
dizziness / lightheadedness - often feeling like im falling over
head / neck pain
body wide numbness and tingling - face, arms, legs, etc - my whole body has been tingling non stop for four years
fatigue / weakness
TMJ symptoms (jaw pressure / popping / pain)
light / sound sensitivity
vision disturbances (eye floaters / fuzzy vision)
Gut issues - slow motility, IBS
nerve pain - occasional down the arms
Cold - my body is always cold, especially the hands
Odd tastes in mouth
Anxiety - Ive never been an anxious person, but it comes randomly and intensely. My Cortisol is high regularly.
Unfortunately @TML hasn’t been on the site since his surgery… I did try to open your images but wasn’t able to, is there any chance you could post some of the images on here directly? The CTA/ CTV of head and neck would be the most helpful ones? I’m not very good with tech myself…
Your symptoms certainly sound like they could be from vascular ES; dizziness, feeling like you’re falling over visual disturbances can happen with Internal jugular vein compression, and sometimes pain at the back of the head can be caused by other veins swelling to take over from compressed IJVs- collateral veins. If you haven’t had your eyes checked, it would be a good idea to get that done, as sometimes with the IJV compression the optic nerve can get compressed too- this would show if you have a scan to check the back of the eyes.
The vagus nerve is often compressed if the IJVs are, and this can cause gut issues, heart rate spikes/ palpitations/ BP spikes, and anxiety. The heart rate issues can also be caused if there’s carotid compression… Head, neck & jaw pain and nerve pain in the arms are common with ES & can be caused by irritation of the trigeminal or facial nerves, and arm weakness from the spinal accessory nerve…
Cold hands has been mentioned by others, although not a common symptom. Some members, especially with VES have other vascular compression syndromes, Thoracic Outlet Syndrome for example can cause nerve pain and weakness in the arms, and coldness…
I’m sorry I can’t help with your imaging though…
Hey Jules - thank you for the response! Due to my head pressure, I am having a very difficult time looking at screens for long . I’ll try to get the software to work and see about some images.
I did change the settings to the google drive so anyone should be able to access the files if you want to give it another shot. Appreciate your help regardless! Thank you!
I’ve just tried to view your images, too, & my computer won’t open the files. I even bypassed the warning that the files couldn’t be scanned for viruses. Kind of frustrating! @eewilliams93 - do you have any techy friends or family members who could help you? Seeing some of your CT images (w/ contrast) would be very helpful.
I was able to read your CT report which made me a bit annoyed since nothing was found, but that’s been the experience of a number of our members who’ve had significant vascular compression. Even though it notes your styloids are normal length, we know that even normal length styloids can cause vascular compression if they are extra thick, curved or angled, twisted, pointed or oddly shaped. Often calcified stylohyoid ligaments which are not attached to the styloids are also missed on imaging or the radiologist fails to mention them. Those can also create the same symptoms as elongated styloids.
I completely agree w/ all that @Jules told you regarding your symptoms & the possible causes plus other potential problems that can cause symptoms we don’t normally see w/ ES.
So your styloid process length is 2.5 cm, which is at the upper limit of normal.
The left IJV has compression caused by the transverse process of C1. I wouldn’t take it seriously, because most people have such compressions and they don’t cause serious symptoms. The venous system works in such a way that if there is an obstruction through one vein, venous outflow occurs through other veins.
I would try to avoid sleeping on your right side as a test, since I see that your right external jugular vein (EJV) has good flow. So if there is some stagnation in venous outflow, it may be relieved.
The collateral veins are not visible, which could mean that you have good venous outflow.
There is a narrowing of the right vertebral artery, which is also stated in the report, so it would be a good idea to do an ultrasound of the blood vessels of the neck, i.e. transcranial color doppler (TCD).
In my opinion, a detailed neurological evaluation should be done along with a good set of laboratory tests.
It’s possible that CCI is causing you problems, so try to limit movements and loads on the neck.
Thanks for commenting & posting those images @tesla001 !
I do agree that the compression isn’t as severe as others we’ve seen on here, left side more so than the right, but we do often see members who don’t have severe compression can still be quite symptomatic… It could be worth you having a telehealth consultation with one of the doctors experienced with VES? Dr Cognetti does review scans & does telehealth appointments, Dr Osborne while he doesn’t do C1 shaves is very knowledgeable & does online appointments… Not sure about some of the other doctors, @Isaiah_40_31 can remember more than me!
It is kind of hard to tell with the rotation and you need more than one axial to see the angle but they look like they angle in pretty heavy which could cause issues, and they look relatively thick at the base. But again hard to tell with it rotating.
I agree w/ what both @Jules & @MGORNEAU said. Your styloids do look quite thick even though they’re not super long. Even with shorter styloids their angle of growth & thickness can cause symptoms, nerve &/or vascular.
In your axial CT it does appear both IJVs are compressed to some degree & the left looks worse than the right. That could be the cause of your headaches & the narrowing of your right vertebral artery could also be contributing to your symptoms. .
@tesla001 - Thank you so much for posting the pictures & commenting. VERY helpful!!
@isaiah_40_31 I read one of your posts the other day mentioning arcuate foramen/Ponticulus Posticus. It resonated because I was recently found to have a complete bridge on the right side, which may correlate with some of my lingering occipital/head pressure and facial pain. Not to take away from the styloidectomy at all, that surgery was absolutely necessary and resolved multiple symptoms for me. I just shook my head and thought I should have posted my imaging on the forum, you would have seen it immediately!
Looking at @eewilliams93’s 3D reconstruction, it appears there could potentially be a partial bridge/ossification at C1 in the vertebral artery groove region, especially given the reported right vertebral artery narrowing on CT.
@eewilliams93 — IntelShare Ambra (https://access.ambrahealth.com/) is free for patients and makes it much easier to store and share imaging through secure links. I tried downloading your CTs directly, but the files were too large to work with easily afterward. If you’re able to upload them to Ambra, I’d be happy to take another look and post images for @Isaiah_40_31 to review if you send a link. If @isaiah_40_31 is comfortable sharing contact information with you directly, she would be better for reviewing the nuances, she has a lot more experience recognizing these findings on imaging, I only have experience with what is specific to my situation.
@MGORNEAU - I’m sorry you have Ponticulus Posticus on one side. I do know it can cause vertebral artery stenosis, but doesn’t always. It sounds like it may be a problem in your case though.
Great catch for @eewilliams93, & thank you so much for offering to collect relevant images for him. I’d be happy to look at them either here or via a PM if you/he would prefer not to post them on the main forum. Jules & other members (like you) also catch things I miss which is very helpful.
In the video, I don’t see evidence of Ponticulus Posticus, however, in the axial image @tesla001 posted above, the C1 anomaly is more visible, but I don’t see evidence of vertebral artery compression in the particular axial image that was posted. That doesn’t mean it doesn’t exist, it’s just not evident in that particular CT slice. I’ve circled the area in pink:
Hey guys thanks for the responses. first I want to thank you all - the willingness to help and the knowledge clearly held in this forum is really amazing. After years of very little help from the pros (or maybe the wrong pros I should say), this is really sweet. Ok so I’ll try to do a point by point response.
@tesla001 thank you so much for the review. I’ll try what you recommended with the sleeping and also pursuing that Doppler imagining.
I was able to finally get a view out of radiant and agree that my styloids seem quite thick at the base and possibly angled more sharply. Not sure what would have to be considered to determine if these 2 variables together could be causing symptoms. Tried to catch best pics of those.
the C1 comments are interesting. I’ve been diagnosed with CC1 from my dynamic imaging and significant overhang numbers. Basically told I should get a very expensive stem cell treatment called a PICL when I met with Dr Centeno in Colorado. However, I just have this feeling that something else/more/in combination could be going on.
I will absolutely upload my images to the sight that @MGORNEAU suggested. I’ll send that on.
Question: there are a lot of doctors mentioned on here. Is there a “favorite” who is skilled in considering all structural issues and making an optimally prioritized treatment plan? These diagnosis seem like they could stack up, so it would be great to meet with someone who gets all of it instead of maybe just specializing in one thing.
We have had some members who’ve have had PICL treatment , mixed results, so given the cost that’s something to consider, if you were thinking about it… it’s probably better to try a styloidectomy first?
@Jules has given you good information about PICL therapy. It’s rather “hit or miss” i.e. inconsistent as to whom is helped by it & for the cost, I’d make it a last ditch treatment if nothing else helps.
I agree w/ @MGORNEAU & can see in the 3 images you posted that your left IJV is more compressed than the right by the lack of blood flow through it in the images. The right IJV can be seen behind the styloid going up into the skull base, but the left one is nearly invisible in the same area due to the contrast not being able to pass through. This is most likely the cause of your headaches, dizziness, balance issues, fatigue, visual disturbances, light sensitivity, etc.
@Isaiah_40_31@MGORNEAU@Jules Ive uploaded the images to ambra health like suggested. I cant figure out the “share” feature, so ive just shared my account details below… nothing on this site is sensitive anyways; and the password is random
I uploaded the CTA, but i also provided my most recent head/neck MRI and a sinus CBCT
@Jules and @Isaiah_40_31 you read my mind with the PICL… its a big investment and one i want to be cautious with. In my consult with Centeno, we spent so much time on the CCI bit and no time looking into anything else from my imaging that I wanted to really get into the weeds of this and consult with people (like ya’ll!) that have been around block before picking a lane
@eewilliams93 I will share screen shots on how to share but you should take down the details of your account, I believe this can be seen publicly not just on the forum
@eewilliams93 here are screen shots. Click that box to the far right then share. Choose email, add email address of recipient, a note to the person if needed and share.
@eewilliams93 - you can send the username & password to @MGORNEAU by clicking on her screen name as it appears in this sentence. That will take you to a page where you can send a private message to her. You can also include me in your message if you want when you write your message to MCGORNEAU.
. I’ll try to get the software to work and see about some images.
