The right does look as though the C1 process is compressing it more than the styloid…also same with your left side although it looks as if there’s a couple of sections of calcified ligament which could be causing symptoms- they could well be irritating nerves and causing pain.
Yes, indeed, in my layman’s opinion it seems like the C1 is the main trouble maker. However, I do have symptoms unique to Eagle’s like occasional throat pain, tooth pain, etc. So I am guessing both are causing symptoms. My neurosurgeon also told me, I have beginning stages of arthritis and bone spurs in other parts in my spine, maybe this is correlated to the enlarged C1?
The mystery I am still trying to figure out though, why did the worsening of my health coincide with the growth of the styloids, i.e. in 2013 they were not visible on OPG, in 2018 they were! My condition worsened temporarily for a few months in 2014 (I still had some less severe symptoms even pre-2014) and then permanently worsened in 2017 (the wood chopping thing I mentioned). Also why did this permenant, nearly 24/7 numbness / pressure in my face start after the 2017 accident?
My guess is that the C1 compression might have been something I’ve had for decades and then in 2017, the styloids somehow moved and caused either even more IJV compression and / or compression of nerves (which led to the facial symptoms).
I think this because, interestingly, the styloids are not calcified in two spots (higher up in the face). I wonder why that is? Did they get fractured there possibly? And then change position and cause all kinds of trouble? Or did they just change position, due to not being fully calcified and static?
@borko2100 - I believe the situation w/ your styloids is this - your styloids themselves have not elongated but a large section of your stylohyoid ligament has calcified on each side. The fact that those calcified ligaments are not attached to your styloids allows them to be more mobile, & that could be why your symptoms have worsened over time i.e. as their calcification became more significant, their mobility brought them into greater contact with nerves & vascular tissues in your neck.
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I agree with @Isaiah_40_31 , there’s quite a gap so it would be more likely that it’s calcified ligaments rather than a fractured styloid. The wood chopping incident could perhaps have shifted things, it’s such a tight space so even a small shift can cause more symptoms. I had nerve pain symptoms of ES which came on gradually over several years, but the vascular symptoms came on fairly quickly; I’d been doing alot of cycling and then had a prolapsed disc C5-C6, so it was enough I believe to start the styloids compressing the IJVs. Ageing is a know factor in developing ES symptoms, so perhaps the arthritis is contributing to a shift in the styloids & starting the ES symptoms?
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Just popping in for a quick update. Seems like finding a surgeon / doctor who is familiar with Eagle’s is going to be quite difficult, these have been my experiences so far:
- GP: never heard of it
- neurologist: knows about it, but only from his studies, no practical experience
- ENT 1: knows something about it, but has no clue about venous compression
- ENT 2: same story like ENT1, furthermore was unable to interpret / read my CT angio
- neurosurgeon 1: never heard of it
- neurosurgeon 2: knows about it, thinks it’s called Eagle’s because the 2 styloids look like an eagle (funny), acknowledges that there is narrowing / compression of the veins, but dimisses it as “you were born this way, it’s not a big deal, etc.”
I’m going to a few more appointmens soon and I think eventually I will either go to Dr. Ladner that @Isaiah_40_31 mentioned earlier or to a specialized center for rare diseases that is in a city close by.
PS: the second neurosurgeon noticed reverse lordosis in my cervical area, as you can see on the CT one of the veins is compressed by the C1, I wonder if the lordosis worsened over the years and contributed / caused the vein to be affected. The neurosurgeon suggested going to a physiotherapist. I am open to the idea, but I think the chance of physical exercises, etc. shifting the bones enough to relieve the compression is very slim.
Anyway thanks again for the all the help and suggestions to everyone.
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I don’t know if this has been mentioned before, sorry if so, but there is a research paper authored by some Belgian doctors, here’s a link:
A rare vascular complication of Eagle syndrome highlight by CTA with neck flexion - PubMed (nih.gov)
I think they’re radiologists, but might be worth looking into, they might know a surgeon?
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I’m including an image of your cervical spine which doesn’t look like it has a reversed curve to me, but it does look very straight so its lost its natural curve. In the image it looks like you’re attempting to touch your chest w/ your chin i.e. your neck is in flexion. Were you asked to put your neck in flexion during your CT scan? If so, that could also make your cervical spine appear more straight than it actually is.
I agree with you that PT most likely won’t shift the bones enough to relieve your IJV compression, but it could help muscles relax which might reduce some of your symptoms. If you choose to go to PT, it’s very important that you see someone who is experienced with lordotic curve restoration but also who is aware of the role your styloids are playing in causing your symptoms so the exercises you’re given are gently & not extreme. If you start PT & it causes your symptoms to worsen then it would be better to wait till after you have your styloids removed to consider doing PT.
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Sorry for the late reply @Isaiah_40_31. Yes you are right i was asked to tuck my neck in for the CT, but not for the MRI.
Here you can see the shape of the spinal column clearly:
To me it looks like the second picture on the chart below. But not as severe as the neurosurgeon thinks. But maybe I am wrong I am not sure.
You can also see a hernia I have, the neurosugeon thinks it is from trauma 10+ years ago, so i dont know if it is relevant to my complaints. And also some mild arthrosis.
Yes, I agree doing those exercises can be dangerous. I’ve had many worsenings (temporary and permanent) over the years, some of which quite severe and I’ve noticed a pattern where they were preceded by physical activity.
Finally, I carefully looked back at my symptom history over the years, and I noticed a pattern where if I sleep for long durations on a consistent basis (> 1-2 weeks) I seem to get worse. On the contrary, the rare temporary improvements I’ve had were during periods where I was sleeping less than usual consistenly (< 8hr). I think a possible explanation is that the compression of the veins might be worse in a suppine position and better upright. Also, certain pills that make you sleep deeply mess me up very bad (Mitrazepine), I’ve tried it maybe 10x and every time without exception the day after is extremely bad symptom-wise. I don’t know if is due to sleeping longer or because the sleep is very deep or likely unrelated.
The numbering of vertebrae is off by one. T1 is in fact only C7.
Also, the the bottom picture is kind of weird. The first two illustrations show the skull being very flexed forward, visually with quite low angle between the skull base and the C2 (it would be pathological CXA I think).
In my opinion the angle of your neck curve is very good, with the exception that there are serious issues of the disc ruining the smoothness and continuity of the curve.
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Thanks for the analysis, yes I agree the curve doesn’t look bad on the MRI. Seems like every doctor / surgeon has a different opinion on these things. The other neurosurgeon I went to didn’t mention anything about lordosis / neck curve.
Yes the disc doesn’t look great, I am not sure if it is causing symptoms though? And if it does which of my symptoms (I have so many), I don’t believe it is the root of everything.
If there is a CSF leak somewhere in the spine then that’s another story. Considering there is some degeneration of the spine and furthermore the compressed / narrowed IJV’s I think it’s quite likely, but my symptoms do not fit the typical CSF leak picture. I do have some symptoms that indicate a possible leak but not that many. Like I already mentioned, being suppine for long does not seem to really help, actually it has the opposite effect. However, despite that, I do get some fatigue relief from being flat for 20-30 minutes (usually when I am very fatigued in the afternoon). From what I’ve read, having both a leak and IJV compression creates a very strange symptom picture that makes no sense, maybe that is what is happening.
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Problematic discs is something both widely explored and still under-understood.
The mainstream doctors usually pay attention to two main things: nerve root, and spinal cord compression.
Then there are less “important” things like osteophytes irritating throat, compressing vertebral arteries etc.
And then even less explored things like what possible effects of damaged various joints in the neck are, how unevenness affects the rest of the spinal alignement and zillion of other things that usually aren’t assessed because there is no clear and common consensus on their effects (not that there aren’t any).
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I agree w/ @vdm that your cervical curve (lordosis) looks quite good. Do you know why you were told to tuck your chin for the MRI?
It was for the CT, no I have no idea, there probably was a reason why they asked that.
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You’d think I’d be able to tell a CT image from an MRI by now, but noooo. At least I can identify some of the physical features in them! 
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Hi everyone, another quick update.
I had an appointment with a vascular surgeon, we had a short discussion and agreed that, on the left side, since there is no significant compression, there would be enough space for a stent to open the vein up, here the picture of the left side again:
The surgeon did not explain why the vein is like that, I wonder too, maybe it is from previous trauma? Maybe the vein was inflammed for some reason and then got damaged due to it?
In any case, a stent seems like a much less invasive surgery than operating on the styloid and the C1 on the other side (right). However I did some reading on the forum and it seems like placing a stent in the vein is not as risk free as the surgeon thinks.
The surgeon said it is a safe procedure, he would use a flexible titanium stent that he said should stay in place. But from what I’ve read the stent can indeed shift? What other risks could there be? Is this a good option or is it better to treat the other side (right) with styloid removal and C1 surgery?
BTW, I just recently learned about collateral veins and how they can take over when the IJV’s are not draining properly, from what I understand, if your collaterals are bigger than normal this indicates a problem with the IJV’s.
Is this a collateral vein or is it another one? I am not sure.
I’m just passing you some thoughts re the vein being “squashed”. Obviously I’m not a doctor, but I suspect it might be due to your head position during the scan. It seems as if your head was in a “chin-tuck” position (unless that’s the natural jaw line in your case), and thus the compression might be just from the soft tissue temporarily pushing against the IJV.
I’d double-check that with the surgeon and suggest undergoing additional ultrasound scanning with the head in multiple positions.
From people’s experiences, stents in IJV may cause new set of problems from pain in the shoulder (due to the indirect accessory nerve compression), pain in the face (indirect facial nerve compression), permanent sense of tightness, pain when moving the head (the whole area is impacted during the movement), fibrosis and clogging up, sometimes into the intracranial space, sometimes - stent migration, and also they may get squished and damaged because the area is like a pair of pliers between the styloid process and the C1 transverse vertebra. So I’d be very cautions about the stent.
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Thanks for the reply, you confirmed what I already read on the forum, seems like the stent is less risky to place than the styloid surgery, however it is more risky afterwards.
BTW, I was thinking about an alternative, i.e. a bypass, it seems to me it is more risky to perform, but it is less likely to lead to complications afterwards, is that a
better option?
I.e. like this:
Yeah, to my eyes it looks like a collateral.
Hm… Is there any surgeon around regularly doing IJV bypasses? I’d definitely have a chat with him/her.
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