Thank you so much for your message. I’m taking into account the possible compression lower down in the neck. But like you, everything worsened following a dental problem, and no medication or treatment (radiofrequency in the operating room, Botox) has worked.
The pain has worsened on both sides, affecting my entire face down to my arm, my eye (retro-orbital), my jaw, and my pain is throbbing, agonizing, and on the side of the tooth, it feels like a burning sensation. I also experience frequent vasovagal syncope and profuse sweating whenever I move, which worsens year after year.
Indeed, dry needling is what helps me the most, even if the effects don’t last long! I’ve noted your recommendation about craniosacral therapy; I’ll try to find a physiotherapist who specializes in that. Thank you very much.
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Thank you, yes indeed, I don’t know if there’s compression and where exactly it is, but my styloid processes do seem to extend very low, and following my thyroid cancer surgery and the extensive curettage across the entire right side of my neck, it wouldn’t surprise me if that could be a factor. My SCM muscles are always extremely tight, with numerous trigger points radiating to different areas, and even a specialized physiotherapist with years of experience using ultrasound can’t seem to release them. The muscle knots reform instantly. I’ve noted all your recommendations and sent all my CT/MRI scans to Dr. Aghayev. I hope his opinion will shed some light on the situation!
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Oh, thank you so much for your help, and I’m so sorry about your two sons. I hope their recovery is coming to an end and that they’re doing much better since the surgery. I’ve only heard good things about Dr. Aghayev, and personally, he’s the one who reassures me the most when I see the state of the healthcare system in France. We’ve been left in limbo for so long; for 10 years, people have thought I was exaggerating my pain and told me there’s nothing wrong. I can no longer work, and I’m on a heavy medication regimen that provides very little relief (codeine, Lyrica, Effexor, and Valium if needed). It’s complicated… and I have physical therapy every week. Each appointment with a French doctor is more disappointing than the last.
I’ll get back to you if I have any questions, and I’m also noting the name of the doctor at the Pitié-Salpêtrière Hospital. I’m waiting for their response regarding maxillofacial surgery. Thanks again!
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Hello, thank you for your somewhat inappropriate message. I would ask you to reread my story and symptoms before commenting on such matters. I do indeed have excruciating pain on both sides, whether behind my eye, in my face, jaw, teeth, or even down my arm. I got a thyroid cancer + reccurrential nerve paralysis + hypo parathyroidy but I think you don’t know what this can generate …
I don’t think you can definitively say whether or not I have nerve/ jugulaire or carotid compressions. And I know how to use DICOM files. Also, I obviously know that nerves are not visible on a CT scan but on an MRI. Please don’t generalize from your case; we are all different.
And to say that the practices and procedures are experimental would be to denigrate highly competent surgeons who specialize in a rare syndrome. I don’t understand how your message is constructive in this discussion, other than explaining things that everyone here already knows.
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I just asked a question and didn’t offend anyone. It’s sad that you had cancer. But I don’t want to discredit anyone, and I’m not judging the surgeons’ work. I’m just telling you that in the C1 area you don’t have significant compression of the internal jugular veins — look at the user SCJeff. As for the nerves, it’s quite complicated, because you won’t be able to see them in full even on an MRI. I’m good at reading CT and MRI scans, and I know human anatomy well.
And there are no radiologists or professional doctors on this forum. On this forum, there are only self‑taught enthusiasts.
Of course, many people on this forum have a fairly good understanding of how to read CT scans, but still, amateurs don’t know some things, and they sometimes interpret CT scans incorrectly.
Most radiologists and surgeons are very good at reading and understanding CT and MRI scans. They perfectly see the compression of the IJV, but do not pay attention to it, since many surgeons do not believe in veins (therefore, these surgical operations are a novelty, and experimental operations). This does not mean that they do not see vein compression in CT scans. They just don’t believe it (there are medical statistics on veins, but they don’t take into account all the nuances, including hydrodynamics and innervation of the vagus nerve. Therefore, this is still a controversial issue among doctors)
The lateral CT scans show that the vein isn’t thin; it’s just a part of the vessel in that image, which is why it seems to be severely compressed. You need to look at the axial slices of the scans along the entire length. And you need to check the veins lower in the neck, the brachiocephalic vein. I call this an experimental surgical operation because many other highly qualified surgeons don’t believe in it.
I’m not saying that these surgical procedures don’t help anyone, but there are people who don’t experience a positive effect, so I want to figure it out. It’s clear that we’re all different and our problems are different. But I want to understand how severe the symptoms are due to the veins, or whether the nerves are actually the main cause of the symptoms. That’s why I’m saying that I don’t see any severe compression of the internal jugular veins in the C1 area.
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I also have a good understanding of the laws of hydrodynamics. And your compression of the IJV in the C1 region cannot significantly affect blood flow (I’ll repeat once again: I’m only talking about the C1 region. And we’re only talking about the CT scans you uploaded. perhaps the compression IJV is in another place.). But these are just veins. But the nerves are a different matter…
And that’s my opinion. There are doctors’ opinions. Of course, we need to understand the problem. I also wish you success so that you can resolve your issue.
Let me repeat once again that you need to look into your problem and listen to the opinions of doctors and surgeons. I’m not saying that nothing needs to be done.
you need to solve figure out and solve the problem
It wasn’t a question, it was a statement, and it was punctuated in such a way as to invalidate everything said before. It’s a strange way to communicate with someone you don’t know and whose history and symptoms you haven’t even read. Especially since, as you yourself so aptly put it, this syndrome must be a correlation between symptoms and imaging.
And repeating so many times that you’re not a doctor, yet saying “other doctors also have their opinions”… leaves me perplexed.
This is a forum based on kindness and mutual support, and your message, aside from discrediting the entire previous discussion, offered no help.
I probably know nothing about your knowledge or your life, just as you know nothing about me. Yet you claimed to know. With that said, I prefer to focus on the positive and the people who are trying to help me here!
If you took the time to read everything, I wrote several times, on the advice of Wendy and Jules for example, that I would obviously seek several medical opinions.
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There is no negativity on my part. I don’t understand you. I just wanted to help you and only said that there is no significant compression of IJV in the C1 area(But that doesn’t mean there isn’t compression of the veins elsewhere.). I didn’t say anything about nerves or neck pain. Moreover, you and the doctors are the ones making the decisions. Not the forum users. I hope you’ll figure it out and solve your problem.
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@junonbss I consulted with Dr. Aghayev after my bilateral styloidectomies, when some of my symptoms improved but others remained. He thinks outside the box and offered a path forward. If you run into walls like I did, he was a light toward finding a resolution, which I desperately needed. I pray you find the help you need soon. 
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Yes, it looks fine in the next image down, so I don’t think it’s an issue…
Your hyoid does certainly look as if it could be making contact with the carotid artery, and around the carotid bifurcation area, which can cause pain in that area, pain the length of the carotid artery, and I think I’ve read BP spikes and heart arrythmias- the vagus nerve could also be irritated which causes similar symptoms, and moving your neck could understandably make these worse… If you have axial view images further down to the hyoid sometimes this can show clearer if there is contact, although I’m not great at reading those images!
Hopefully having your styloids removed would help with the nerve pain symptoms you have, if not the vascular issues. Dr Aghayev is knowledgeable about TOS as well, so will look at compressions further down than the styloids. My only worry is that he’s been hesitant to do surgery on others where scar tissue might be causing compression, and if it’s perhaps scar tissue from your cancer surgery then he might be concerned…
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I think there’s a pretty experienced cohort of doctors now doing IJV decompression, and a significant amount of research has been published… Many doctors still don’t believe in ES and dismiss that, even though there’s plenty of research about that too. I agree that not everyone does well after this surgery and it’s not always clear why, and definitely agree that it would be good if it could be worked out why…
We have seen on here that the level of compression on the IJVs doesn’t always correspond to the severity of symptoms, we’ve had some with quite minor compression who feel really ill, and others with sever compression who only have minor symptoms. Obviously if someone has developed collateral veins that can reduce some symptoms, but often these cause pain instead.
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Thanks for speaking up @junonbss
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Yeah my dental procedure sent me thru the roof but I was already having neck issues for years from hyper mobile EDS. The pain was so bad, I just wanted to be in a coma for 2 weeks and the ER visits were useless. I was in agony. There is nothing worse than jaw and teeth pain. Sounds like some symptoms of dysautonomia (POTS?) and your vagus nerve is involved.
In my experience , oral maxillary docs have been little help and Ive been to a few Pain centers around the US. The suggestion Emerald made is a good one. Seek out a doctor who knows about Eagles or you will be run around to inexperienced doctors chasing your tail. Your certainly got plenty of imaging for a thorough review.
Oh, check out the Upledger Institute for cranial sacral practitioners. https://www.upledger.com