I went to see my dentist because of pain I thought was associated with dental work. I was told that everything looked good. However, shortly after leaving the office I received a call from my dentist who said that after looking more closely at my xray he believes I may have ES. I have no idea what I’m looking at. I wondered if anything might stand out to any of you? I am waiting for my appointment with an ENT.
Thanks for your thoughts.
1 Like
Well, your dentist had in mind some small bones called Temporal Styloid Processes growing down from your skull, that usually are short and thin. Sometimes those bones grow thick and/or long, or ligaments that are attached to them start getting calcified,
I marked these bones that in your case are obviously longer and thicker than ‘normal’ ones. Also, it seems that some ligaments are partially calcified too (highlighted together with elongated bones).
But the question would be, do you have any symptoms, and if yes, what sort of symptoms? Frequent headaches, ear pain, neck pain, sensation that something is stuck in throat, swallowing difficulties, weak/hoarse voice, chronic fatigue, stiffness in neck, stiffness in jaw, trigeminal neuralgias, pain when chewing, any odd sensation as if there was a swollen lump inside?
These structures can be simply lurking in the neck without any symptoms, and it’s speculated that as few as 4% or as many as 30% of population might have them. Eagle’s syndrome is considered when they become symptomatic, which is again speculated that only about 4% of those few are symptomatic.
3 Likes
Thank you very much for that information. I did some reading about the typical symptoms and I have to say I am fortunate not suffer with those things. I am wondering however, if there is a possibility that it could be related to something I have suffered from for decades? I get what I refer to as an attack that can happen several times in a month or may not occur for possibly three months and then starts again. It is an excruciating pain that starts in my back and then the pain builds until it is felt in my chest between the bottom of my ribcage. The pain is so bad that It can bring me to tears and there is no position that helps. I end up rolling on the floor. The pain will sometimes radiate up to my jaw and I have a metal taste in my mouth Strangely over the years I found Ibuprofen (once it kicks in) will eventually stop my pain. I feel absolutely wiped out from it but when its over I am pain free.
I have been to doctors, specialists and even the emergency room, I have had several endoscopy procedures but no answers. I am usually told that it must be related to acid reflux. I have explained that it doesn’t matter what I eat or drink. I have been woken from my sleep at times with these attacks. I’ve had them after only drinking water and driving down the road. There is absolutely no rhyme or reason and the doctors have never been able to help me. I also go to the chiropractor regularly. The volunteer who approved my membership mentioned that the vagus nerve can be irritated by ES and I am now wondering if that could be what is happening to me. Especially because it comes and goes.
It would be amazing to finally have an answer and perhaps some relief from such a painful and confusing condition. If anyone else out there has ever experienced something like this please reach out.
I appreciate all this information. Thank you so much.
Hi @michad,
@vdm gave you great information & good insight into your panoramic x-ray. How great that your dentist knew enough to let you know he saw that your styloids are elongated. It is my opinion that the crazy pain you get is coming from your vagus nerve & absolutely could be caused by your elongated styloids. We have found that though there are more common symptoms for ES, there are also those that are less common & sometimes only unique to a single individual. For a long time, I was the only person on this forum that I knew of who had the feeling that the roof of my mouth & upper gums had been scalded as if by boiling water. That sensation would come on suddenly & last for an hour or two then disappear. It was crazy, but it went away after my styloids came out. After a few years, I recall someone else mentioning a similar sensation.
The fact that your symptoms are being blamed on GERD/acid reflux would definitely point to the vagus nerve as many of our members are diagnosed w/ acid reflux & treated (unsuccessfully) for it prior to ES diagnosis. The vagus nerve is a key player in gastrointestinal tract function so giving it relief from impingement by the styloids, allows the vagus to recover & the symptoms it’s causing to stop or diminish. Unfortunately, short of having your styloids removed, there’s no way to tell for certain if they’re the culprits. I think there is a good chance you would get at least some relief though.
1 Like
Thank you so much for your input. I need to make more time to read others posts to see what type of testing I should make sure to get. I am also interested in reading about the surgery, the risks, and the recovery. I am glad that you finally got relief from your symptoms as well. I have never heard of Eagles Syndrome so this is very eye opening.
1 Like
There is voluminous information on this forum about what to expect from surgery & recovery, &, of course, any of us who’ve had surgery are willing to answer questions. As far as finding info about testing, that may be harder to come by. A neurologist could be a good resource for you, but it would have to be someone who is knowledgeable about ES & knows how it can affect the cranial nerves, otherwise you’ll likely be dismissed as hypochondriacal or stressed.
I see that you have an appointment with an ENT. Your ent may also be a head neck surgeon/otolaryngologist. The best advice I can tell you is to skip all doctors other than a head/neck surgeon that has a lot of experience in Eagles Syndrome surgeries. They will be able to rule in or out anything to do with ES. It will save your a lot of time and heartache. Beside if you have it and I think you do, I hope your would want someone very experienced to do this surgery as they are moving through a lot of nerves and vessels. There is a list on the website of experienced head neck surgeons. Best of luck to you!
1 Like
@michad with elongated styloid processes, any high velocity chiropractor manipulations on the neck (aka cracking the neck) is absolutely contraindicated, as it may tear or otherwise damage blood vessels in the neck should the styloids come in contact and “scratch” them.
What you experience with back pain, besides what’s been mentioned by @Isaiah_40_31 , in my non-medical-specialist-opinion might also be either accessory nerve irritation, or partial temporary interruption of blood flow to the brain (similar to TIA but without blood clot involved, simply decreased flow) if one of the blood vessels get compressed and the redundancy mechanisms don’t work as they are supposed to work.
These things may happen because of those elongated bones.
3 Likes
I truly appreciate all of your input. I’m at the very beginning of this journey so I am sure that I will have many other questions and concerns as things move forward.
Thank you all so much.
1 Like
The main thing is to get to an ENT with hands-on experience with ES. This may be easier said than done; there’s not one on every block. You may have read accounts on this forum from people (including my wife) who went to ENT after ENT that saw absolutely nothing there, even though they were looking right at it. Finding this kind of experience and knowledge is, in fact, one of the major challenges of dealing with ES.
2 Likes
I did some searching on the forum and found a Dr. Snyderman who some recommended. I was actually able to get an appointment with him tomorrow. I hope that this is a step in the right direction. Thanks for all the help.
1 Like
I did just revisit a post about Dr. Snyderman, & it looks like he does intraoral surgery. When you see him, if there’s discussion about surgery, please ask if he’s also willing to do external surgery as we have learned that the external approach provides better access to the styloids & stylohyoid ligaments so they can be removed to the greatest extent possible (at skull base & down to hyoid bone if needed). It also allows better visibility of nerves & other soft tissues to help keep them safe though many doctors now monitor nerves electronically during surgery.
Please let us know how your appointment goes. I hope you feel heard & supported @ michad.
I had my appointment with Dr.Snyderman today. He looked over my xray did an exam and asked me several questions. He isn’t convinced that my physical pain can be attributed to ES. I do not suffer from any of the typical symptoms you see with ES. As all of you know you can have elongated styloids but have no ill effects. He does feel like it is a nerve issue and suggested that I see a neurologist.He referred my to a doctor who deals with neurological spine disorders I tried to make the appointment but they said I needed to have imaging done first. I guess I have to see if my PCP will write me a script to get these images.
Dr. Snyderman felt that other things needed to be ruled out before he would consider ES to be the cause of my pain. Some of you have expressed that there is no way to know if ES is the issue unless you have the surgery and your symptoms are relieved. At this point surgery is not warranted. If I ever find out what is wrong with me I will be sure to post in hopes of helping someone else find answers.
Again thank you for all your input and support.
1 Like
In general, doctors who are familiar w/ ES don’t necessarily agree on what types of symptoms are caused by elongated styloids/calcified stylohyoid ligaments. The thing we do know is that there are 6 of our cranial nerves that can be impacted by the styloids when they get unruly, & those cause pain & misery once they’re irritated or tangled up w/ the styloids. Your styloids are visibly elongated thus it would be easy to conclude that at least a few of those 6 nerves are being impacted, however, you are wise to pursue Dr. Snyderman’s referral & see what the neurologist says. I hope (s)he is someone who is familiar w/ ES & can give you good guidance. If your symptoms aren’t debilitating, there’s no reason to rush into surgery so taking your time to figure things out is a good idea. We’ll be here for you should you need to venture back in this direction. 
2 Likes
I have dealt with my pain attacks for decades so I figure I can see a few more doctors. I haven’t ruled out ES.
2 Likes
It’s good that doctors don’t offer false hope that surgery will definitely help, although conversely it would be more helpful for some with typical ES symptoms if doctors did offer them surgery…but as you’re not sure yours are ES & not typical it does make sense to rule out other things too. Keep in touch & let us know how you get on!
1 Like
I had no idea there were 6 of the cranial nerves affected, do you know which 6 besides the Vagus (10th)?
Research articles list Trigeminal Nerve (CN5), Facial Nerve (CN7), Glossopharyngeal Nerve (CN9), Vagus Nerve (CN10), Spinal Accessory Nerve (CN11), Hypoglossal Nerve (CN12) & also possibly the Vestibulocochlear Nerve (CN8) as all being potentially affected by the styloid processes.
4 Likes
@NCardinal - There is a YouTube series called “Two Minute Neuroscience” that has a separate 2 minute talk about each cranial nerve. Very simplified & easy to understand. I highly recommend watching them.
2 Likes