@Filya I wish you well and pray you find the answers you are searching for. 
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@Filya - The photo you posted with the extensive collateral veins isn’t what we usually see in the imaging our members post. More minimal collaterals can’t take enough of the load off of the IJVs to help prevent symptoms. I’d guess that what’s seen in the image you posted is much more rare than the more minimal collateral development we usually see here.
Are you a doctor/surgeon?
I’m using a translator, so there may be some errors. No, I’m not a surgeon or a doctor. ))) I’m an engineer, and I’m familiar with the physical laws of hydrodynamics (blood is a liquid). I’ve noticed that most people with symptoms and problems related to IJV don’t have well-developed collateral vessels. Additionally, I understand hydrodynamics, so I’m sharing this information with you to highlight the connection to collateral vessels.
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Study your CT and MRI scans, as you may miss the compression of the internal jugular vein in another location (for example: between the arch of the aorta and the scapula of the sternum, as I mentioned above). Have surgery with surgeons who have experience, also consider resection of muscles and possibly C1, since repeated surgery in the same place is difficult for the surgeon due to fibrous tissue/scar tissue. And not every surgeon agrees to operate a second time and may refuse.
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Thank you for the good information you gave in your post, @Filya, & for the image you posted. I don’t think I’ve seen imaging of fibrous/scar tissue before, but I have definitely seen flattened sections of IJVs below the styloid/C1 junction without know what the cause was. I always try to point this out when I see it in images I annotate.
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I have problems with swallowing food, after surgery. I have to eat small pieces at the time. I do go for walks, which caused lots of exhaustion. I have one surgery pending (left side)
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@HannahM I hope that this resolves after your second surgery, have you got a date? 
@HannahM - Have all your previous surgeries been for ES? If so, are you seeing someone different for your third surgery? I also hope this last one is the fix for your swallowing trouble. I had problems choking on food & when I was drinking but those are mostly gone since my styloidectomies. I’ve also had 3 surgeries for ES.
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No, I first began with a gallstones (calcification). I had my main bilater stylo-dectomy / tonsilectomy on November 19, 2015 in Illinois - Northwestern University. Around ten days later, I went into bleed control / artherial. I was at the right place at the right time at the Hilton Hotel just behind the Northwestern Hospital. I have subsequent symptoms. I went to Rush Pres. St. Luke in Chicago, IL for more testing. Nothing.
Around March 31, 2019, I flew in to NY (5 hours) and I was unable to hear anything out of the plane and I told the flightattendant who was concerned but did not call an ambulance. I went onto taking an academic test at Touro that morning and I fainted after. I was taken to NYU Langone where the GREAT Dr. Mark De La Cure, did a (right) stylodectomy. This revealed, I did not have the bilateral stylo-dectomy in 2015 at Northwestern University in Illinois because I began to bleed.
This is what I have some doctors have told me as the cause.
Summary: How gut dysbiosis from SIBO, Enterobacter cloacae, and H. pylori can lead to vitamin K2 depletion, impaired calcium handling, and ligament and arterial calcification
In the context of SIBO (small intestinal bacterial overgrowth), overgrowth of species like Enterobacter cloacae (a Gram-negative Enterobacteriaceae member), and H. pylori infection, the key pathway involves disrupted vitamin K2 (menaquinone) metabolism. This does not typically cause high calcium levels in the blood (hypercalcemia); instead, it leads to misdirected calcium deposition in artery walls (vascular/arterial calcification), arterial stiffness, and increased cardiovascular risk. Here’s the evidence-based mechanism in simple steps:
-
Gut bacteria normally produce most of our vitamin K2
Beneficial gut microbes (especially in the colon) synthesize vitamin K2, which is far more bioavailable for vascular health than dietary K1 from plants. SIBO and dysbiosis shift the microbiome: overgrowth of Enterobacter cloacae and similar species can reduce overall K2 production or impair its absorption in the small intestine, while H. pylori and its eradication (especially with antibiotics) further promote dysbiosis that lowers functional K2 availability. -
K2 depletion → inactive matrix Gla protein (MGP)
Vitamin K2 is the essential cofactor that “activates” MGP (produced by vascular smooth muscle cells) through carboxylation (adding Gla residues). Without enough K2, MGP stays in its inactive form (dephosphorylated-uncarboxylated MGP, or dp-ucMGP). Active MGP acts like a “calcium magnet” that binds free calcium ions and prevents them from depositing in soft tissues like artery walls. -
Inactive MGP fails to regulate calcium → ectopic calcification
Calcium from diet or bone turnover is no longer properly directed to bones/teeth. Instead, it accumulates in the elastic fibers and walls of arteries (medial or intimal calcification). This stiffens arteries, reduces elasticity, promotes atherosclerosis, and raises risks of cardiovascular events. Serum calcium levels usually stay normal—the issue is where the calcium ends up, not how much is circulating. -
Direct link to SIBO (and your mentioned bacteria)
- A key 2017 clinical study found SIBO patients had significantly higher inactive dp-ucMGP levels (a direct biomarker of K2 deficiency) and greater arterial stiffness (measured by pulse-wave velocity) compared to non-SIBO controls. The stiffness directly correlated with inactive MGP.
- Enterobacter cloacae and related Enterobacteriaceae are common in SIBO and can disrupt the balanced microbiome needed for optimal K2 synthesis/absorption (some strains produce K2, but overgrowth overall favors net deficiency via malabsorption and inflammation).
- H. pylori contributes indirectly: infection and especially eradication therapy can trigger dysbiosis, reducing K2-producing bacteria and leading to functional vitamin K deficiency in animal models.
Resulting effects (“etc.”):
- Arterial stiffness and early subclinical atherosclerosis (even before visible calcifications on scans).
- Increased risk of coronary artery calcification, vascular disease, and related complications (e.g., higher cardiovascular mortality in some populations with K2 deficiency).
- In chronic gut issues like yours, this can compound other problems (e.g., inflammation from LPS/endotoxins released by Gram-negatives like E. cloacae).
Important caveats
This is a plausible, evidence-supported pathway (strongest data from human SIBO studies and vitamin K/MGP research), but it is associative—SIBO/dysbiosis does not always cause clinical calcification, and individual factors (diet, genetics, kidney function, inflammation) play roles. Vitamin K2 supplementation has shown promise in some trials for slowing calcification progression by restoring MGP activation, but results vary.
Treating the root (SIBO eradication, H. pylori management, microbiome restoration) plus targeted K2 support (under medical guidance) is often discussed as a potential strategy. Lactoferrin (from earlier) may help indirectly by modulating gut pathogens without worsening dysbiosis.
This is general scientific information based on peer-reviewed studies (e.g., Ponziani et al. 2017 on SIBO + K2/MGP). It is not medical advice or a diagnosis. Your neighbor’s newborn or any personal symptoms (gut issues, vascular concerns, EDS overlap) need evaluation by a doctor—ideally a gastroenterologist or functional medicine specialist familiar with SIBO, nutrient testing (e.g., dp-ucMGP levels), and cardiovascular risk. They can order appropriate tests and guide safe interventions. Feel free to share the additional info you find later!
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Are you planning to have another surgical operation? Or you can choose conservative treatment. I haven’t decided yet whether to visit Dr. Kamran Aghayev or opt for conservative treatment.
Can I ask here on the forum that you send me your CT and MRI scans before and after surgery (Dicom files, all files from the disk, please send a link to Google drive or similar). By private message.
It is also possible to consider and use conservative treatment. Work with an osteopath on a regular basis, work on your posture, get massages, and relax your neck muscles.
These operations are not that simple. When too much of the transverse process of the atlas is removed, some of the muscles of the head and nerves may be severed.
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@Filya I’m not sure that the muscles are severed with a C1 shave, that’s something that you should ask Dr Aghayev about, in the presentation he’s done which we have links to on here, he mentions how much of the C1 can be removed without causing any instability…
We have found that some conservative treatment like improving posture, restoring the natural lordotic curve etc can help symptoms to a point, but from our experience on here surgery is the only real ‘cure’… that said, it is a big decision so we do encourage members to think about it seriously, and to get more than one opinion.
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That’s interesting about the SIBO, we do see some members who have this & we’ve wondered if it was caused by irritation of the vagus nerve by ES… I can see that the calcium builds in the arteries, do you think it could lead to extra calcification of the styloids/ stylo-hyoid ligaments too?
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What a journey you’ve been on @HannahM! We lost track of Dr. De La Cure. After referring several members to him 4+ years ago, & hearing that they couldn’t get a hold of his office, & there was no contact for him on the internet, we guessed he may have moved, retired or ? so I took him off our Doctors List. Do you have any clue where he went?
Thank you for the information about SIBO. I’ve known a number of people who’ve been diagnosed & treated for it, but didn’t ever consider it could be connected to ES! Super interesting information.
Is your next surgery a revision styloidectomy or do you think neither styloid was properly resected during your first surgery?
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I am not a physician, however for what I have consuleted, once the calcification is settled, it is almost impossible to cure. Dr. Richard Urso (now dissabled), knew the mechanism and as early as 2020 recommended to focus on K2 dietary needs. This is the compiled information and 1000’s of documents. The current researcher Sabine Hazan https://progenabiome.com. I’ve read lots of her postings. I think she is currently working with Sec. Kennedy’s attorney Aaron Siri.
I later learned about the mastic gum, lactoferin, etc, act as fast and effective treatments of SIBO and e. clocae, e. pilori, along with a morning probiotic and before eating any meat. These means that there is correlation between ulcers and ES.
Upon speaking to physicians: I think they say lot more during consultations and they are being cautious. ES is not idiopathic, as these researchers and their papers are conclusive as to the actual cause of ES.
As to why it is incidentally associated or found when someone gets into a car accident? Well, that is tacit. People in caraccidents get checked by doctors.
Add that 50% of people with xanthelasmas could be an indicator. Those with Xanthelasmas (more women than men) have underlying lipid disorders (dyslipidemia) or inherited high cholesterol. However, a significant portion of patients have perfectly normal cholesterol levels. Other potential contributors include:
- Diabetes
- Thyroid issues
- Smoking and obesity
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Good afternoon! I want to tell you about my condition: over the past week, there has been a periodic progress of 40-50%. But this effect is unstable. Clarity in the head returns from time to time, ringing in the ears practically disappears, and it becomes easier to breathe. The nose stuffs much less — even after coffee, there is no complete blockage, as before. Strong intracranial pressure and constant “fog” in the head go away.
However, a new sensation appeared: a feeling of pressure and a “coma” in the area of the left temple and eye socket (everything is fine on the right). The symptoms worsen (return) after eating, as it provokes coughing. I also don’t sleep well yet, and in the morning there is a “fog” in my head and pain in the incision area (since I sleep on this side too).
I attribute this to the condition of the muscles and fibrosis in the incision area. When I cough, there are pains. And I often cough very hard, straining the muscles of my larynx and neck. I noticed that on days when I feel better, this area does not hurt and the sensitivity in it is higher (i.e. there are no cutting or stabbing sensations when touched).
I think the fact is that I had a high mental load at work, I was constantly suffocating and coughing a lot, including while eating. I’ve been out of work for a little over a month now. I eat at home and try to cough less and irritate this area. Apparently, because of this, the incision area was constantly inflamed, and the fibrosis increased. Now that I’m not working and I can eat at home, I have less cough. It looks like the scarring/fibrosis has started to decrease, resulting in decompression of the vein and nerves."
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This is one opinion. But there are other opinions. I believe that when the ligaments/muscles are tense and there is a high load that is located near critical arteries and nerves, they begin to ossify (calcification) in order to protect the arteries and nerves. Therefore, there is also ossification (calcification) of the ligament where the foramen arcuate atlantis, ponticulus posticus, or Kimerle anomaly is located.
Otherwise, ossification (calcification) occurs in all muscles. However, we only see ossification in muscles and ligaments that are close to important arteries and nerves, acting as a protective barrier. Additionally, an excess of calcium in the body can contribute to the development of calcification.
Ossification of the stylohyoid ligament occurs when the flexible band connecting your skull’s styloid process to the hyoid bone turns into bone. This process is largely driven by genetic predisposition, local trauma (like surgery), and chronic mechanical strain. When this hardened structure compresses surrounding nerves and blood vessels, it causes a condition known as Eagle’s syndrome. [1, 2, 3, 4, 5, 6, 7, 8]
The primary causes and underlying mechanisms include:
1. Embryological Remnants
The stylohyoid chain develops from “Reichert’s cartilage” of the second branchial arch during fetal life. Sometimes, unabsorbed embryonic cartilage persists in the ligament. This cartilage retains the potential to grow and mature into bone later in life. [1, 2, 3]
2. Trauma and Inflammation
- Surgical Trauma: Procedures like a tonsillectomy can irritate nearby soft tissues, triggering localized bone formation.
- Neck Injuries: Direct impact or repetitive stretching of the neck or throat can cause the periosteum (connective tissue) to undergo osseous metaplasia—where fibrous tissue transforms into bone to heal and adapt to stress. [1, 2, 3]
3. Chronic Mechanical Stress
Conditions that cause chronic stress on the jaw and throat, such as Temporomandibular Joint (TMJ) dysfunction, exert constant pulling forces on the stylohyoid ligament. Over time, this mechanical strain induces the ligament to ossify. [1]
4. Genetic Factors and Aging
- Genetics: Ossification can be inherited as a familial trait through autosomal dominant patterns.
- Aging: Elasticity naturally declines with age, which can lead to degenerative changes and subsequent calcification. [1, 2, 3, 4]
5. Metabolic and Endocrine Factors
Systemic issues that affect how your body regulates calcium and phosphorus (such as endocrine disorders in postmenopausal women or chronic renal disease) can promote abnormal calcification throughout the body. [1, 2, 3]
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@Filya - We have long noted that stress increases ES symptoms so you aren’t alone in that regard. We think, besides what you’ve suggested, it’s partially because stress increases the cortisol level in the body which incites the fight, flight or freeze instincts which in turn cause muscle tension & “nerve” alertness which in turn increase symptoms.
I’m glad that you’ve had some symptoms reduction since you stopped working though I’m sorry you had to quit your job. I hope your symptoms continue to stay at a reduced level.
Thank you for sharing opinions about why ossification occurs in our necks thus causing ES. We’ve had a number of discussions over the years here as to what the potential causes of ES are, & those you’ve mentioned were included. I’m glad you’re doing research & sharing what you learn as it’s been a while since the potential causes you listed have been mentioned.
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There are no doctors on this forum, only amateurs. )))
