Hoping you guys can help shine some light on what I’m experiencing. Since October I’ve been experiencing dizziness, pressure headaches, sound sensitivity, and pulsating tinnitus daily. The headaches get worse when laying flat, and when I perform chin tucks. Dizziness gets worse when turning the head and sometimes when swallowing. Head also feels heavy. I wake up everyday feeling hungover no matter how much sleep I get. I also experience bouts of vertigo.
I received a CT angiogram back in October for my head and neck. Radiologist reported no concerns. I finally decided to get my hands on the imaging as there is certainly something going on - and it isn’t anxiety. It irritates me when doctors say it is. I think they use the fact that I’m a PhD clinical psychology student against me.
What do you guys think about the images? I’m obviously not a doctor nor radiologist, but would like to hear the community’s thoughts. I took a crack at measuring my styloids. They seem to be around 3.2cm each - so not extraordinarily massive. However, it looks like the space between my styloids and C1 might be a bit tight and may be interfering with my internal jugular veins?
I came across this journal article on a case study where it looks like the individual in the case study (who is experiencing venous outflow difficulties) has similar styloid-C1 spacing as me? - https://journals.sagepub.com/doi/10.1177/1358863X20902842
What are your guys’ thoughts? I’m in Canada, which I think stacks the odds against me.
Hi @TML - Welcome to our forum! Good job sleuthing out the likely cause of your symptoms when your medical system failed you! You definitely have IJV compression in this image:
I assume you sent one image of your right side & one of the left & humbly apologize that I can’t tell if this is your left or right side as both images are facing left. In the other image, you may have IJV compression, & if so, it may be caused more by C1 than your styloid. I also noticed on the side I annotated your styloid has a significant curve to it which can also increase its contact w/ nerves & vascular tissues thus causing worse symptoms on that side.
Unfortunately, the medical system in CA isn’t well educated re: ES & there are very few doctors who deal with it. Because of that wait times are very long (1-2 years in some cases) to get the surgery needed. A number of our CA members have come to the US for surgery. Many have seen Dr. Cognetti in Philadelphia as he & his associate Dr. Heller do the surgery necessary to shorten the styloid & decompress the IJV. Dr. C does the styloidectomy & Dr. Heller the IJV decompression which can sometime require a bit of the transverse process of C1 to be shaved off. If you can afford to travel & pay for surgery in the US, you will get help sooner than if you wait for care in CA.
Thanks for welcoming me into the community @Isaiah_40_31. I really appreciate your thoughts on my imaging. First time I’ve gained some insightful feedback about my difficulties and it’s so nice to hear. I’m sick of people thinking I’m crazy, or tricking myself into thinking I’m crazy.
Thanks for the information regarding Dr. Cognetti. I think it’s worth reaching out to him and his team. That being said, I don’t have an official diagnosis. Do you need an ES diagnosis to schedule with them, or do they take the time to hear you out and look at your imaging and go from there? Thanks again!
Hi @TML and welcome to the community
Your symptoms sound terrible and I can relate
Did you do do a dynamic ct where they have you turn or bend the neck? Or was it just lying down position?
I agree with @Isaiah_40_31 that it does look compressed in left side view , and it also looks to have a similar large diameter in the areas below the comp area
I am interested to see more of the right side view as the axil mip view shows what looks to me a very small ijv on the right.
To be clear I am just a patient and not a doc,
I do believe that the imaging can more revealing in a slice by slice view
For me I would also get these painful head aches at the base of my scull on the opposite side of my compression sight
I was told by my doc that this pain was associated with collateral blood flow to compensate for the poor flow from the other side.
Do you have and base of scull type headaches?
I kind of forget my first scans off hand but the first ct was not dynamic, and the mri blood flow study both were not to telling,
And only when I did the catheter based study that it was revealed as to major compression
I would also contact the office and see about initial consult and what there needs are to be seen
I also feel that most of the md that were dismissive initially( for me ) were also in the dark so to speak regarding eagles, and maybe a simple question to start for them is1)how many eagles patients do they see a year
And 2) how many diagnoses have they given regarding eagles
Best of luck in your journey
You have already found one of the most valuable resources here as have I
@TML In the axial image you can see the IJV starting to pancake out. As @mekanX noted, if you look at your images slice by slice you will be able to see how it is open and then starts to flatten.
Also, @mekanX, I wanted to note that I had the type of skull base headache you described on the left side from collateral drainage. It was alleviated when the left side was decompressed.
@TML - I don’t believe you need an official diagnosis to get a consult with Dr. Cognetti. I think the imaging you have & will send to his office is sufficient for him to diagnose you & offer you surgery.
@Chrickychricky thanks for your thoughts! I did some more digging into the imaging. It’s hard to see because of the lack of contrast in my left IJV, but it appears to be pretty round and normal just about the c1 transverse process (see image) but then pancakes between transverse process and left styloid (shown in original pictures posted). I also have what appears to be venous compensation in the veins in the back of my neck on the left side (shown in original pictures and this picture). I also went further down and it looks like my carotid arteries and my IJV are getting crammed by my hyoid bone on the left?
Thanks for this @mekanX ! I replied down below to @Chrickychricky which I think speaks to some of what you’re saying. And yes I get major headaches at base of skull, especially on the left. Which makes sense because I think I have venous compensation happening in my veins in the back of my neck on the left. I also get full head pressure headaches and I feel the urge to pop my ears constantly when it happens. Mostly happens when laying flat, or when looking down for too long. Also, I’ll be sure to ask the doctor the questions you recommend I ask. Thank you!
@TML - I think it’s been mentioned that w/ your symptoms you should rest & sleep w/ significant head elevation to help reduce the magnitude of your headaches & head pressure. Getting a wedge pillow can really help with this.
Hyoid Bone Syndrome is also something we see with some frequency on our forum however, it’s not usually associated w/ vascular compression. I’m sorry I’m lousy at making sense of the images you just posted. If you don’t have a disc with your images on it, you should be able to request one from the radiology clinic that did your scans. Then you can create 3D images using free software. Some of us are more helpful when we have 3D images to look at.
@TML - Just to let you know, it can take a couple of weeks to hear back from Dr. Cognetti’s office so don’t get discouraged. I would encourage you to follow up this week w/ a phone call just to make sure they got your form & are processing it.
Sorry to hear you’ve not been doing so well. I just had to comment because our scans look quite similar! I’m still kind trying to figure out what exactly is wrong, but I know I have IJV compression.
I hope you find a good doctor or at least are able to manage your symptoms in the mean time. I have also compared how I feel sometimes to feeling hungover. It’s unfortunate too that laying down makes it worse/doesn’t provide relief. Anyways, I just thought it was kind of interesting that our scans looked fairly similar. Take care!
I’m was kind of thinking/hoping that weird area at the end was something else? Here are some other images. It looks like it might not be entirely attached to the styloid? I honestly wasn’t sure what it was. Thank you for your thoughts!
Wow @Kit_Cat they look very similar!!! The crazy part is that for both of us, our left IJVs lack contrast. And I think I also see that your posterior cervical veins are enlarged and compensating for your compressed IJVs!
Try this - go into the axial view and keep going down until you get to the very tips of your styloids. I think maybe the tips of styloids are brushing up against your carotid arteries, which I think is the brighter bit by the tips of your styloids. Here’s mine:
Here are some photos of some scans! The first two are slices that are 1.25mm and the last one is 5mm. I think mine look okay? They don’t look as snuggled up next to the carotids as yours? I had not known where to look for the styloids from the axial view though, so thanks for showing me that! I do experience pulsating tinnitus, but it is primarily when I have an especially severe headache. It is fairly constant for you?
They might touch more snuggled depending on head position because when you tilt/turn your head the styloid tips also move with your head tilt.
My pulsating tinnitus sometimes with head movement, especially if i bend down to pick something up. But definitely occurs more frequently during my pressure headaches.
I’ve uploaded a picture from a study showing the “typical” spacing you should see between styloids and C1 vertebrae. It’s no wonder we are experiencing our symptoms. The median styloid-C1 distance in the healthy sample was 9mm. My distances are 3.5mm and 4.5mm so quite tight. Yours look similarly spaced. And the space gets even smaller when looking down.
