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Can I see your CT scans, Google drive ? And who did you consult about this? Which surgeon?
What are your symptoms?
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Were you able to download the dicom?
Yes. I downloaded the files from the blocked website via VPN. You don’t have well‑developed collateral veins — vertebral veins. The left IJV is compressed by 95%, the right IJV is compressed by 60–65%. I haven’t checked the jugular foramina in the skull yet; there’s hypoplasia of the transverse venous sinus on the left (this is either due to compression or the jugular foramen). I quickly looked at your images; I’ll take another look later.
Do you have more ringing/tinnusit in your ears/head on the left side, or not?
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I do think that symptoms can worsen over time; your body can compensate for a while & then it’s not enough, or the collateral veins stop relieving enough of the blood flow, it might be worth getting a second opinion?
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Some people are asymptomatic, just as some people can have elongated styloids and be asymptomatic…just luck I guess at times?!
The C1 and C2 can become misaligned for reasons other than instability:
"Misalignment of the atlas and axis can arise from several factors. Physical injuries that jolt or jerk the head are common culprits, but even the repetitive stress of daily activities can lead to gradual misalignment. Sometimes, the birth process itself introduces the first misalignment, which can remain asymptomatic until later in life. Other factors include sports injuries, falls, and even prolonged screen time, which contributes to what is commonly known as “text neck.” "
A Guide on C1 and C2 Vertebrae Misalignment Symptoms
So this answers your question about your job & potentially the fusion too contributing…
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@Bay I read back through some of your posts and understand you’ve undergone unilateral styloidecotmy but still experience vascular compression symptoms. And if I understand correctly, your pressure tests show ‘normal’ because of your flow through collateral veins. Did this venogram disqualify you from surgery and if so from what surgeon? I am consulting various surgeons for my antlanto-styloidal jugular compression but already assuming my venogram may not show much pressure gradient because I don’t have much flow in my right jugular because I’m coping with collaterals. But the claim that surgery would not benefit seems unlikely to me. The compression causes many painful symptoms and once corrected the restored flow through jugular would allow collateral veins to disappear and systemic symptoms to reside.
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The Doctor Who told me surgery would not benefit me for my compression was Dr. Nakaji in Scottsdale, Arizona.
The Doctor Who performed, the venogram was in Boise, Idaho. He doesn’t know much about Eagles syndrome, but what the venogram showed was that the compression isn’t dangerous. And the narrowing that happens when I’m looking up or to the right is also not dangerous for me. My body had created a lot of lateral veins, all of which were quite large. And this is fully compensating for my compression.
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Are you sure the left side is worse than the right? Several doctors have told me the opposite; in fact, my tinnitus is worse on the right side than on the left
Okay, I’d really appreciate it if you could tell me as much as you can see.
After surgery, I don’t want to leave anything behind that could continue to cause symptoms.
Thank you
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I’m currently waiting to hear from a neurosurgery team about whether or not I’ll have surgery
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Thank you. And how do I know if there’s something misaligned that’s causing bilateral compression as a secondary effect? Or maybe it’s just the correction that has closed off the space
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Thank you for the info. And what is your opinion do you think - does the jugular compression and diverted flow through collateral veins cause you symptoms, pain, limitations, etc and are you still seeking a surgeon for decompression? The caveat with pressure testing is that people with sufficient collateral veins or super compliant tissues from Ehlers-Danlos Syndrome for example, will not register as abnormal pressure gradient, they may only show 2mm HG difference at the level of stenosis, so this needs to be considered on a case by case basis. My impression of Dr. Nakaji is that he filters for severe vascular compression only by requiring a CTV, pressure testing, in person consults, etc. I’ve read of a few other forum members being turned down who found success with other doctors willing to help them.
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Currently I am not seeker further for decompression. I’m 2 weeks post op from my second styloidectomy. I am going to wait a few months and see what clears up from this. So far it’s looking hopeful that this will be the answer to my headaches and ringing in my ears. The one symptom I’m not sure it will fix is the warm pressure that builds at the back of my head when eating something that requires a lot chewing like beef or a salad. I’m not quite to a place of healing yet where I can eat those kinds of food comfortably.
With that said if this symptom continues but isn’t dangerous to me I don’t think I’ll look into decompression I can live it. If my headaches go back to being debilitating then I would revisit decompression.
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You have a stone in the left salivary gland.
Do you lead a sedentary lifestyle or do you exercise intensively?It looks like you’re exercising your neck muscles (you have an enlarged sternocleidomastoid and other neck muscles) When you sleep on your side, which side makes you feel sick more or faster?
You have a narrowed jugular opening in your skull on the left, but it’s not critical. Also on the left side, below C1, there is a compression of the left IJV between the SCM and the bifurcation of the carotid artery (it also looks like a lymph node, but this is visible only on MRI).so there are two compression points on the left side.
You also have TOS on the right, mechanical irritation of the right IJV, but there is no significant compression there. Thrombosis is possible over time. Do you have numbness in your hands? Cyanosis of the hands ? From which side?
There is a curvature of the cervical spine
Perhaps your vertebral veins are not developed due to the trained and enlarged neck muscles.
The compression of the vein is stronger on the left than on the right. But there is also about 65% compression on the right, and an enlarged venous bulb-bubble on the right (since the right side is now your main route of venous outflow)
You can try to remove the styloid process, but you need to remove it at the root, completely, otherwise there will be no decompression. I can tell you for sure that not a single facial surgeon (including those mentioned here on the forum) will guarantee that he will be able to remove the styloid process at the root. You have a very deep root of the styloid process and C1 is high.
I would start on the left side and with a high probability the left side would be enough (if you don’t have pain on the right) (also remove the lymph node), but it’s up to you and your doctors to make the decision (I’m not a doctor). And most likely you’ll need to shave C1 as well. (only the styloid process is not enough)
When you lie on your back (sleep on your back), do you feel unwell (does your intracranial pressure increase, do you experience increased fog in your head, shortness of breath, or worsening nasal congestion? )? Do you have nasal congestion?
Of course, no one can give you a 100% guarantee. But starting on the left side gives you a good chance that you won’t need surgery on the right side. And vice versa. If you start the surgery on the right side, there’s a good chance you’ll also need to perform surgery on the left side.
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I knew I had a stone in my salivary gland; it started causing me problems just yesterday, and now I have a lump in my neck—I have to see an ENT specialist.
Before all this, I led a pretty intense lifestyle—I’ve been doing a well-structured strength training routine six days a week for years.
The pain while sleeping varies from day to day; I usually sleep on my back.
I know there’s a spot where the vein is also compressed between the scalene muscle and the sternocleidomastoid muscle. There’s also a point where an artery compresses the vein—I’m not sure which side it’s on (Dr. Kamran Aghayev told me this).
I didn’t know about TOS; it’s true that sometimes over the past few months the area just above my collarbone has been hurting—I don’t know if that’s related.
I don’t have numbness or cyanosis in my hands due to these causes, but I do have nerve issues in my elbows that cause the area from my little finger to my elbow on both hands to go numb (tingling) in certain positions.
What do you mean by “Perhaps your vertebral veins aren’t developed due to trained and enlarged neck muscles”?
I know about the enlarged venous bulb on the right—I suppose that’s why they told me that was the side that was worse.
I have pain throughout my neck on both sides—in fact, I have issues with blocked ears, especially on the right side—so I’m not sure if treating just the left side will be enough. Dr. Kamran Aghayev recommended a double styloidectomy and a double C1 shave, in addition to separating the artery that’s compressing the vein.
Yes, when I lie on my back, the problem gets worse—I notice more congestion, more deep discomfort in the area, and even in my eyes. Yes, I also have nasal congestion (a lot at first, less now); in fact, the first doctor I saw was an allergist. I also notice dryness and swelling in my eyes.
But if I have pain on both sides, shouldn’t both sides be operated on? Do you know what might be causing the cracking sounds in my neck, in addition to all the other symptoms? It’s as if it doesn’t move properly, and I also have pain in my trapezius muscles, scalp, and back. Could this be resolved after surgery with physical therapy? I have tried to fix it now, but I feel like I’m stuck in a cycle; I think I need to address the vein compression first.
It’s what I said at the beginning, this condition is so little known and complex that I’m afraid I might be missing something, and that I’ll continue to have problems after the surgery, so any help is welcome.
Thank you very much for your time, Filya
As @Filya has said, he’s not a doctor, and that you need to be guided by your doctor; if you’re getting pain both sides then you may well need the styloidectomy both sides to deal with this, whether or not you have compression. The styloids can cause compression of the spinal accessory nerve which can cause pain in your arms, trapezius muscles, and weakness, so ES might be the cause. The back pain could be from poor posture because of the ES pain- quite a few members have had to ‘retrain’ their muscles after surgery and had PT to help with this to correct bad habits…some muscles could’ve shortened, others lengthened over years, so it can take a while. Dr Aghayev also treats TOS so I would’ve though he would have picked up on this if it was an issue for you.
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Okay, I’m not going to strictly follow someone’s surgery advice from a forum, but it always helps to see different points of view, and maybe it can help me notice things I haven’t seen and bring them up with the neurosurgeon. I just want to make sure I know what to do to get back to normal, and sometimes (especially with conditions that aren’t as well-known as this one) doctors overlook certain things because they lack experience. That’s what I said at the beginning—it’s such a little-known and complex condition that I’m afraid I might overlook something and that I’ll continue to have problems after the surgery
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@nemo - We each get a different set of symptoms with ES & though we can somewhat predict phases of recovery, there’s truly no way to know which symptoms will completely go away & which may continue to be problematic until the styloids are gone. We know from years of reading about our members’ surgical outcomes, that in bilateral cases, most often, both styloids need to be resected, & with bilateral IJV compression, having both IJVs decompressed will provide the best overall symptoms recovery.
Knowing which cranial nerves can be irritated by elongated styloids, & which symptoms they can cause, also helps to predict what symptoms have a good chance of going away or at least reducing after surgery. Nerves that have been irritated for a long time can sometimes take a long time to heal - 12-18 months & beyond. I had nerve injury that took 10 years for the pain to stop, but it finally did.
PT is certainly an option after surgery & some time healing. We’ve had a number of members who’ve gone to PT post op for help with recovery.
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