Hi all, I don’t like being the new guy but here we go
My styloid process is not far off entering the back of my mouth and when its touched too hard it bleeds in that area
So having had problems over more than three years now and have seen numerous doctors and dentists I have come to the conclusion that I have got ES.
My last visit to my Dr on Friday didn’t go too well as he had never heard of ES, so I asked him to Google it, which he did.
I also told him how to check the styloid process, he declined, but what he did do was write to ENT(again) with some urgency.
So I am excited.
Having had major surgery before and broken 18 bones after crashing motorcycles I am not worried.
My question is to you all is if any of you have had like a brain fog, or feeling like you aren’t getting oxygen, is like being slightly drunk, as well as fatigued.?
They told me it was fibro myalgia brain fog and nerve pain.
I have swallowing issues, jaw and face pain, my voice is going,I have headaches, eyepain, neck pain, shoulder pain and of course pain around my tonsil.
I can cope with all of this but its the brain type fog which is the hardest thing to deal with.
If its not related to ES than I have another problem.
Thanks anyway for having me
Hello
My name is Denise Daviau. I have written about my experience with ES extensively on the Facebook Eagles Syndrome Group. You might find it interesting as I’ve had the same symptoms as you. Mine started in 2012. I was finally diagnosed In Dec of 2018. First surgery was 4/2019 second surgery in 2/2020. I am cured. What a relief. There are symptoms you wouldn’t think related to Eagles yet after the surgeries everything is gone. The very most important thing is getting an ENT with a lot of specific Eagles experience. There is a list on this website by area. I am in Massachusetts and had Dr. Donald Annino. Also the choice of intraoral or external surgery. I would never do internal. Much longer recovery and much higher chance of infection or bleeding. Plus it’s being done blind. Much safer external and the scar is hidden in the natural teases in the neck. Good luck to you.
Hi Optimistic
Just a quick response from me. Similar symptoms as me, but especially brain fog, which I’m pleased to say went completely after two successful Extra oral surgeries. Hope you find this encouraging!
Wishing you all the best!
Pumpkin
Welcome! Have you gotten a CTA/CTV of your head and neck? It would be interesting to know if your styloids are compressing your jugular veins, which can raise head pressure-intercranial hypertension and cause those head symptoms. Good luck to you! Keep chasing your diagnosis!
Hi optimistic!
I agree w/ Swoo - your brain fog & headache symptoms sound like you could have vascular ES i.e. compression of either the internal carotid artery or jugular vein especially when your head is in particular positions. If you get a CT scan w/ contrast, having your head in the most “provocative” position (i.e. the position that brings on the headache/brain fog) during the scan will give the best results. With the injuries you’ve sustained from those motorcycle accidents, I’m not surprised you have ES as it has been speculated that it can be caused as a result of head/neck injuries. I believe mine started as a result of a whiplash injury I sustained many years ago.
Hi DD thanks for the reply but I left Facebook last year
I have a question, did any pain killers work for you? If so which ones?. I will of course check out your story over the course of the week
Well I went into Facebook and copied some of my story into a note. I’m hoping I can then copy it here for you. As far as pain meds go, I don’t take them except what the give during surgery I never take them. Here’s my Facebook story. Minus the pictures. It won’t let me copy them here. Good luck to you
I still can’t really wrap my head around just how many issues I’ve had that were all related to Eagles Syndrome… since my surgery on Tuesday morning:
No more ear pain
No more choking in the night
No more feeling of something stuck in my throat
No more chest pain
No more pain that was thought to be costochondritis
No more occipital neuralgia
No more blurry vision
No more pins and needles or pain in my left arm
No more headache
No more pain in left shoulder
No more whooshing sound from the compression of the jugular and carotid.
The list goes on and on.
One more thing… since I woke up from surgery I have not had to take anything for pain! Not even a Tylenol!
There have been several people that have asked if Dr. Annino cuts off the styloid at the skull base. I am attaching my operative report to show just what he did for me. I hope this resolves some questions for those thinking of going to Dr. Annino. He’s a fantastic doctor!
I complained of ear pain for 8 years to my pcp and several other doctors… ENT’s, Neurosurgeons, never heard of Eagles. Then the doctors did a special scan as they were looking for a tumor for another issue I have. Part of my sinuses and Eustachian tube lit up so they sent me to Dr. Alec Vaezi head Otolaryngologist at UMass Memorial Hospital He did biopsies in my head. Then I was telling him of my 8 year earache and he put his finger into my mouth and pressed where my tonsils were and OMG it recreated the terrible pain. He told me he was sure I had Eagles then sent me for a CT with contrast specifically looking for Eagles and measurements. The diagnosis was confirmed. Almost 6 cm on the right and 7 cm on the left. He had only done one or two of these surgeries so I went to Dr. Annino. The most important thing is to find aN ENT that is very experienced In Eagles surgery. I chose external surgery as it is safer ( better visual field, less chance of infection and better control of bleeding) the 2” or 3” scar fades to nearly nothing within months. Safety first.
WOW WOW WOW… what a difference! Already, my arm numbness and pain, my ear pain, the terrible wooshing heart noise in my ear,the choking feeling, the brain fog, even the chest pain… GONE!
Only surgery pain now and just knowing that will go away is phenomenal. 
Fantastic story, I have another question
It is to do breathing
I am confused with what I feel like is lack of oxygen
I have had a CT of my lungs and they are fine
I have 98% oxygen and still they say my lungs are fine
But my brain feels short of oxygen, is maybe the brain fog which I interpret as lack of oxygen and I’m pretty active and healthy otherwise, seems I sometimes need to put effort into breathing as I have trouble automatically breathing
And is getting worse
Did u have anything like this?
Is like I have smoked a spliff or had beers
They gave me amitripylene and it feels like a pill kind of drowsy
It’s horrible, I can handle the pain but this must be the worst symptom
I did have that feeling, maybe not to the extent you are experiencing. Mostly at night when I would go to sleep I would wake feeling like I couldn’t breath. Eagles Syndrome has so many varied symptoms. I think because of all the nerves involved it can feel like different things to different people. I would bet that you are having this feeling due to Eagles. Just really make sure you’re surgeon, if you decide to have surgery, iv very experienced in Eagles. Some horror stories exist from people who just took any ent. I strongly recommend external surgery. Wish there was a way to show you pictures on this site.
Denise, Seenie here from ModSupport.
While we don’t mind people mentioning other support groups, we are very protective of our members’ privacy and we don’t want anybody to risk the privacy of their medical information as a result of what they read here. I’d like to add a couple of caveats to your post:
-
You mentioned your surname, which puts you at some privacy risk in the googly world we live in today. I’ve removed it for you. Our communities are all open to read (otherwise nobody would ever find them), so we strongly discourage using real names.
-
Facebook, even its “private” groups, leaks like a proverbial sieve. And here’s the bottom line: that Facebook wants your data. Facebook wants all the consumer, medical, and personal information that it can get its electronic hands on. We strongly discourage our members from putting themselves at that kind of risk with medical information, and so we strongly discourage strong recommendations to those groups. I can’t stress this strongly enough.
That said, we don’t mind someone mentioning that they are on a FB group. But we actively discourage strong recommendations, for the protection of our members’ privacy. For that reason, I’ve taken the liberty of toning down your recommendation a bit. I hope you understand.
On the positive side, things to keep in mind:
- Unlike Facebook, this community encourages people to be anonymous with their screen name and even with their location.
- Our conversations are threaded, and the vast amount of real-life information from real vetted patients here can be searched. Our search engine works really well.
- Other members of the group cannot identify you and expose your identity.
You mentioned pictures somewhere. Uploading here is quick and easy.
Click on the “upload” icon:
and a pop up guides you through the rest:
Other than those details, thanks for your really helpful participation! It’s members like you, and the excellent moderators here, that make this community safe, strong and supportive.
All the best to you
Seenie from ModSupport.
Hi all, I don’t like being the new guy but here we go
My styloid process is not far off entering the back of my mouth and when its touched too hard it bleeds in that area
So having had problems over more than three years now and have seen numerous doctors and dentists I have come to the conclusion that I have got ES.
My last visit to my Dr on Friday didn’t go too well as he had never heard of ES, so I asked him to Google it, which he did.
I also told him how to check the styloid process, he declined, but what he did do was write to ENT(again) with some urgency.
So I am excited.
Having had major surgery before and broken 18 bones after crashing motorcycles I am not worried.
My question is to you all is if any of you have had like a brain fog, or feeling like you aren’t getting oxygen, is like being slightly drunk, as well as fatigued.?
They told me it was fibro myalgia brain fog and nerve pain.
I have swallowing issues, jaw and face pain, my voice is going,I have headaches, eyepain, neck pain, shoulder pain and of course pain around my tonsil.
I can cope with all of this but its the brain type fog which is the hardest thing to deal with.
If its not related to ES than I have another problem.
Thanks anyway for having me
[/quote]
My goodness the last photo is unbelievable
How many years was it growing? Did they have any idea?
It started in 2012 with an earache that no one could figure out. I had had some neck surgeries in 2008 and a revision in 2012 they blamed it on that. When you get the ct scan it must be with contrast so they can see the jugular and carotid. You can turn it into a 3D on a computer.
By the way my scar is not noticeable at all now
Hi optimistic!
The vagus nerve helps control breathing, blood pressure & heart rate among myriad other bodily functions. It is commonly irritated by ES & getting the styloid pressure off of it so it can heal should make a huge difference toward recovery from your symptoms.
I had breathing issues especially when exercising when I had ES. My blood pressure would drop, my heart would race, & I’d feel like I couldn’t get enough oxygen & might pass out. It was pretty scary. I can’t recall if I noticed the O2 deficit at other times, but I can tell you that, just as DeniseD experienced, these problems stopped soon after surgery.
I exercise hard & sometimes long (20 mile hike today, for example). I wasn’t able to do that prior to my ES surgeries because of the symptoms I mentioned above. I was 58 when I had my ES surgeries, & I’m 5+ years post op, so perhaps that tells you what a difference it has made in my life as a now “older” adult.
I am sorry for the pain you’re suffering. Having your styloid poking into your throat as it is must be excruciating. I hope you’re able to get in to see the best possible doctor in your area ASAP!
Hi DeniseD -
Thank you for posting your pics & post op report. Very interesting info. You had one nasty styloid/calcified stylohyoid ligament. No wonder you had all those symptoms. It’s fantastic to hear how much difference surgery made for you & especially how quickly your symptoms disappeared.
I do want to caution you that post op recovery can be a bit of a rollercoaster ride as far as pain goes. We have noted repeatedly that symptoms can disappear soon post op then come & go over a number of months as the body heals more completely. I hope your pain is gone for good, but if any of it should come back, don’t panic. Just know this is part of the healing process. We are here for you throughout your recovery journey. Please ask questions when you have them, & lean on us for encouragement if you need it.
Wow, Denise, that is amazing! Ugh…I shiver just looking at your MRI and what they took out!
I’m not an Eagle patient, but if I had the choice, I’d go for the “external” approach too: that scar of yours is going to disappear beautifully into the crease of your neck. (Me, I’ve got joint replacement scars, and they don’t disappear … but the relief and the improved function is worth it! Besides, I’ve come to think of them as battle scars!)
All the best in your recovery.
Seenie
And if this had been done intraoral they would have never gotten it all out
Seenie… that image is a CT with contrast that I put in a program to change it to 3 D. Not an MRI. 
Thank you for all of the encouragement and its great to read so much positivity, I was looking at so many different angles that the styloid process grows at and thats why symptoms vary so much from person to person.
If the skull was designed by man I would say they stuck this styloid process bone in as an afterthought as it looks so out of place, we were thinking of evolution and what we were before? I definitely have a tusk now.
Maybe my ancestors were elephants or rhino’s?
Anyone know which seems to be the most popular pain killer for post op patients?