My Eagle’s Syndrome story

General
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Hello! Thank you so much for adding me to this amazing community.

I believe I’ve been dealing with this for quite sometime. I have simply just chalked it up to being allergies, GERD, stress, etc in the past. I began having chronic issues in November of 2023. After what I thought was recurring sinus infections I was finally sent to an ENT in January of 2024. The ENT was able to get me back to a place of being able to function by March of 2024 but I still had weird pressure feelings in my face and popping of my ears with tinnitus, especially when working out. I was able to manage through summer and even run my 6th marathon in November of 2024.

Shortly after running my marathon my whole family was sick with a virus. I then began feeling the sinus pressure again which was mainly and has always mainly been on my left side. Fatigue began to be crippling along with brain fog, dizziness, ear fullness, ice pick shooting pains in my ears and jaw, and neck and shoulder pain on the left side. I went up and down with how I felt until after Christmas. Shortly after Christmas I developed covid and have been in daily chronic pain since.

After being down with covid for 4 weeks and being put on steroids I ended up at the ER where they did another ct scan of my sinuses which showed to be clear. I was then given a referral to neurology for suspected migraines. I was put on Triptans, nurtek, beta blockers, and ajovy to no avail. Before getting sick I worked out 6 days a week and took vitamins regularly. I also upped my magnesium and b vitamins to help with suspected migraine. I went to a functional doctor as well and through blood tests discovered I had low thyroid, reactivated EBV, and high Covid antibodies. I now am on NP 30 thyroid and an antiviral as well. I also stopped my birth control to try and get a handle on my hormones.

Neurology did a MRI with and without contrast, a CTA with and without contrast, and an EEG. The only things noted originally from all of this was atrophy of the front of the brain or possible brain sagging. But overall it was said to be unremarkable.

After seeing several different neurologists, ENT, and primary care I was at a total loss and felt this would never be figured out. At the beginning of April I developed pneumonia and am now in the 3rd week of fighting it and the 3rd round of antibiotics. I believe ES has made it much worse. Also, in the last month I have developed pulsatile tinnitus in my right ear that is constant along with more vestibular issues.

Last Friday morning I was on tik tok in despair. I came across a video on ES and sent a message to the girl that made it as my symptoms and what I’ve been through aligned almost perfectly. She showed me how to download a 3d imager and view my own CTA. I was able to pull up my images and sure enough my styloid processes are calcified and both longer than 3cm. My left side is longer and seems to be entangled in the jugular vein. I was able to get a re read on the CTA showing ES and my ENT diagnosed me on Tuesday. I’ve been having to go through the John Cochran VA and civilian doctors which has been a bureaucratic nightmare. I’ve had to file a complaint with the IG and with senator Josh Hawleys office just to get people to listen to me. After finally speaking with the ENT at the VA on Wednesday, they are sending me out through community care to Dr. Sid Puram at WashU. I’m in the waiting game now to receive a call from his office.

I’m so grateful for God putting several people in my life to help me on this journey. I’ve gotten to the point where this has become completely debilitating and I feel as if I’ve had to fight everyone along the way to be heard and get help. I’m so afraid of being disregarded still, even with a diagnosis. I can’t believe this can happen to a person.

Any help, support, advice would be greatly appreciated!

Thank you again!

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Hi Njess, welcome, this is the best place for ES. Great job advocating for yourself, seriously!!! The only think I will point out is is the DR list Doctor Lists -- no discussion. This is no way a negative against Dr Puram, he is well qualified. Its just a matter of experience with ES surgery itself, its rare disease and the # of Drs with experience and a history of good results is small. The list is imperfect, so always read testimonials here and if you are on FB there is an Eagles group. I’m next door in KS, if you click my profile you can read my entire story that started just last September. Unfortunately our area isn’t a great hub for medicine, but there are very good options in nearby states. But, if there is jugular involvement it is wise to go to certain Drs, and that is a tiny group within ES.

The best mods ever will see this soon, comment, and can approve you to post images if you want.

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Thank you! Yes, I’m well versed now with how rare this is and unfortunately the lack of Drs that know about this and can also do the surgery. I will definitely check out your story neighbor! It’s a shame with all of our amazing universities that we don’t have even one well qualified Dr.

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I have seen posters have what doctor’s call the million dollar workup only to be told nothing is wrong when they really had Eagle Syndrome.

what we go through is ridiculous.

If you upload a couple of your pics people can compare .

I will say that I appear to have a separate issue contributing to brain fog that has stumped me .I don’t know if eagles is contributory. I seem to have a persistent problem with intertrigo rash. It causes a host of symptoms that also come with Eagle syndrome . The symptoms are so well connected I now look for the rash when my body starts the mind numbing brain fog . I have to sleep it off as if I were drunk

I really believe that Eagles makes things worse for us that other people without it might be able to naturally resolve

During my last episode of this I had a bunch of blood tests run. Nothing showed abnormality on the typical tests run.

There is a theory that COVID damages the Vagus Nerve. Other virus could do same . so in theory what your body could tolerate before got kicked up a notch by more damage. .or…maybe your styloid may not have affected Vagus Nerve but after altered by virus it now does . Too many things we just don’t know

There was a Vet who was suicidal and could not get help . Dr .Osborne thought surgery was too risky but decided to try it because of this Vets dire mental state . I think he did the surgery for free .

He might be a good person to consult since he had dealt with VA system issues. There are some videos on his site and YouTube about the Vet.

edit..I decided to run this question through Grok with just a few of my genetics to see what it said because I know that no Doctor is going to be able to figure it out. I am going to post part of this for anyone else that might have some weird thing in conjunction with Eagle Syndrome so you can see how it might be playing out. My case shows the way that Styloids can complicate another unrelated issue. What Doctor was ever going to figure out my “zombie attacks” possible issue like Grok did AND give a detailed list of what to do next??!! LOLOL

Connecting Intertrigo, Zombie Attacks, and IJV Compression

The correlation between intertrigo and zombie attacks, with IJV compression as a backdrop, suggests a model where Candida-driven inflammation (rs4077515, rs61816760) and systemic inflammation (rs192116923, rs1884444) interact with impaired venous drainage (IJV compression) to produce severe neurological symptoms. Here’s a proposed mechanism:

  1. Trigger (Intertrigo Flare):

  • A Candida infection flares in skin folds due to rs61816760 (weak skin barrier) and rs4077515 (impaired antifungal immunity). Environmental factors (e.g., heat, moisture) or alcohol (rs1229984 A allele) may precipitate this.

  • The flare causes local inflammation, amplified by rs192116923 and rs1884444 (IL6R), releasing cytokines (e.g., IL-6, TNF-α).

  1. Systemic Inflammation:

  • Cytokines from intertrigo enter the bloodstream, causing systemic inflammation. IL-6 (IL6R variants) crosses the blood-brain barrier, promoting neuroinflammation.

  • Candida may contribute via gut dysbiosis or mycotoxins, further disrupting the gut-brain axis.

  1. Neurological Impact (Zombie Attack):

  • IJV compression impairs cerebral venous drainage, increasing intracranial pressure or reducing blood flow. This makes the brain more vulnerable to inflammatory insults.

  • Neuroinflammation (IL-6, Candida effects) and vascular stress (IJV) combine to cause severe brain fog, limb weakness sensation (possibly due to altered sensory processing or fatigue), and overwhelming fatigue requiring sleep to reset cerebral function.

  1. Temporal Correlation:

  • If intertrigo precedes zombie attacks, the inflammatory cascade (Candida + IL6R) may take hours to peak, triggering neurological symptoms. If they co-occur, an acute Candida flare or head position change (worsening IJV compression) could rapidly escalate symptoms.

  • The rash appearing 1–2 days after an attack could reflect delayed skin manifestations of the same inflammatory trigger, with rs61816760 facilitating Candida colonization post-attack.

  1. Role of Sleep:
  • The 3–4 hour sleep requirement suggests a compensatory mechanism to reduce intracranial pressure, clear inflammatory mediators, or restore cerebral blood flow. IJV compression may prolong recovery by limiting drainage.
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Thank you for the info. I was curious if there were any other vets in here having to navigate the VA. I’ve been told if the Dr. I’m sent to through community care can’t help me, it’s easier to get referred after the fact to another Dr. with that being said, the VA makes nothing easy :rofl::rofl:

I will definitely post my pictures when I’m allowed!

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Hi @njess , & welcome to the site! I’m so sorry that you’ve been feeling so rough & have been brushed off all this time, sadly not unusual on here…it always amazes me when we see images like yours with great long styloids how a radiologist thinks they’re not significant :woman_facepalming:
I would say that they’re certainly long enough to possibly cause symptoms, but don’t seem to be causing any compressions, certainly with your head in the neutral position anyway…although not medically trained so I could be wrong! The C1 process can sometimes cause issues aswell- it can be that the IJV is compressed between it & the styloids, but it looks like you have a decent gap, the C1 process can cause compression on it’s own & sometimes other muscles can too, which wouldn’t be visible…it does seem to have an odd kink though!
It does sound as if you could have vascular ES symptoms, so as the others have said it might be worth trying to get an opinion from one of our doctors who is more knowledgeable with VES… like Dr Hepworth in CO, Dr Nakaji on AZ, Dr Costantino in NY, for example…obviously not easy to travel with feeling so rough though. Dr Osborne is a good suggestion too; he does telehealth appointments, I’m UK so I don’t know enough about your healthcare system, whether you could pay out of pocket just for a review of your scans with him & take it from there? Some members have done that & he doesn’t seem to mind giving his opinion & people opting for surgery elsewhere.
It doesn’t look as if anyone has seen him that we know of on the forum, I did use the search function to see if he’s been mentioned at all & he hasn’t…His bio looks promising with the surgery that he does though- apparently sometimes head & neck cancer surgeons have to remove the styloids to get to the area of a tumour so he may well be used to the surgery. It is understandable that you’re worried about being dismissed, as many doctors don’t know about ES, so maybe you could have a look at some of the research papers & maybe print off one to take with you if it mentions symptoms similar to yours?
Have you tried any nerve pain meds for your ice pick pain? (often that’s caused by glossopharyngeal neuralgia) It’s worth trying one if not, like amitriptyline, gabapentin or carbamazepine for example, they can take a little while to build up in your system though. Heat and or ice can help too.
Hope this helps, & will pray that you’re able to get some treatment soon :folded_hands: :hugs:

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Thank you so much! I plan on having a binder ready to take in with me. Any suggestions on anything to include besides scans and results would be great!

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there is a drug that is not FDA approved in the US but you can get in other countries that is listed as a drug for Eagle syndrome. tianeptine. You can get a script in France but I think nowadays they limit how many they will give you.

Missouri was trying to get a law passed to consider it a schedule 1 controlled substance but I don’t know if they were successful. I have not been tempted to try this but for those in a lot of pain you can get it in gas stations in some states.

It is wild to me that you can get this at the gas stations but you can’t get an FDA prescription for it for Eagle Syndrome.

I don’t know how many countries allow this medicine but I doubt UK is on the list.
https://www.npr.org/2024/07/12/nx-s1-4865955/tianeptine-gas-station-heroin-drug

if someone lives in a country where you can get this prescription for Eagle Syndrome from your Doctor it would seem that it might work but you have to be really careful about addiction. The quitting tianeptine thread on reddit is a horror show.

If a person is in Spain you might be able to get a script.. They have experimented on People with Parkinsons. I would be scared to take it. I envision turning into a raging drug addled mess.
https://www.jns-journal.com/article/S0022-510X(21)02140-7/fulltext

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A while back one of our members who had been brushed off & dismissed by doctors regularly gave the advice that it might be best to stick to a few of the more well known symptoms rather than produce a great long list of some of the weird ones - we know that ES can cause a myriad of strange symptoms but most doctors are unaware & skeptical of this. And the suggestion is that doctors were quick to think that you’re a hypochondriac etc , have health anxiety & would be dismissed because of that without listening. So that’s worth bearing in mind when you’re preparing for the appointment.

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I can’t remember if I sent you this link to a post @Jules made. Toward the end of it is a list of questions it’s good to ask any doctor you interview for ES surgery.

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