Very strange symptoms ! Pease help!

HI all ; does anyone here feels a facial pressure all over the face when leaning forward along with face pain,jaw pain,tmj pain,hyoid bone pain ,pain near the thyroid,bone pain under the chin ,aching or sensitive teeth,stiff neck,gum pain more like bone pain ,pain in the angle of the jaw just below the ear ,eye pain,occipital area pain and tingling,glands under the neck aching and sore sometimes ,painful and burning tonsil area , roof of the mouth also hurts sometimes,constant feeling that something is stabbing the right side of my throat and neck, etc. etc . I had a lot of blood tests , Mri scan of the brain and neck all fine apart from a small herniated disc in the neck ,seen 2 ENT Doctors how did the camera thing trough my nose and throat , once again throat and ears are fine according to them .seen neurologists went to a neurosurgeon and no diagnostic of anything whatsoever and now they think this all thing is related to anxiety !!!! Insane!!!! I have been suffering with all this pains for over a 1,5 years and getting worse. sorry for the long post but I am feeling lost and don't know what else to do.

Face pressure thing…yes for sure. I do not think that is ES. I think that is an outflow restriction in the thoracic area (on me at least) or a neck muscle restricting bloodflow.

I don't relate to any of the pain you describe, because I was pretty much without pain. The teeth though, yes. We even redid a root canal, thinking it was infected.

Tingling yes, glands aching, yes, sometimes pain down the side of the neck which I thought was carotid related at the time.

I had surgery, one side, and the face/neck pressure was helped for a while after surgery. It slowly came back. I am thinking that it was helped because of the POSITION that the head is placed in for surgery, which gives a nice 2-3 hour neck/thoracic/shoulder stretch on that side. I can help the pressure with certain neck/shoulder/chest massage work, so that's why I really think it's from that. That pressure is extremely annoying, though, and very distracting and hard to deal with. I have cervical spine little issues, as well.

The jaw tingling is gone after surgery, so is the aching stuff and the tooth pain is less, but not gone. The biggest benefit of my surgery was that my dizzy/unsteadiness that came on and off all the time is gone. It's noticeably gone, and hasn't shown up even a little bit since surgery. That's all I know for now! :)

Thanks for the reply !!!

Where do you live?

I live in England !!

AmyBlue said:

Where do you live?

You most likely have Eagles.

Since you live in UK, I am afraid we have heard of only one physician in UK so far. I hope you connect with other members and I hope other members will let us know if they find new physicians to add to our list. I am posting the information for Rogan Corbridge in Reading, UK I don't have a clue how far that is from you, but hopefully a place for you to start.

The only test for Eagles is the CT scan with contrast or 3D ct scan. MRI's and Xrays do not work, but some of our members have found it at an oral surgeon's office when they take those panoramic xrays.

I had all of your symptoms. If you gently pass your finger down near the affected tonsi area you may find the "bony elongated styloid". It doesn't alway land there even if you have the syndrome, but if it is there it is pretty obvious that you have it . Be careful, it is painful to touch and you should not put pressure on it. Although it very rarely breaks on its own, if you push on it you could cause a lot of issues.( my doctor's advice). I found it when I put my finger down on the side of my throat near the base of my tongue, but I will tell you, it was at the farthest point down that I could reach without gagging and throwing up. Mine was large and lumpy feeling. The portion that was removed measured 2.8 cm. My doctor called it a 'Pencil'.

Dear Tiagitos,
Welcome to the best website for this Horid Syndrome! Yes I too have had similar problems every time I put my head down it becomes so bloating and everything starts throbbing!
The funny thing is I did have an infection in a root canal back molar. That had been done 7 years ago.
It had been there some time! Didn’t know it was infected until the pressure had built up from the infection! Took two different courses of Antibiotics to clear that infection up! My heart goes out to you as this is a Journey. The end of pain is the goal! Hang in there with the rest of us! Hugs!

First just know your symptoms are not crazy in your head stuff. It is your body which talks to other members within the body and they are all being affected. If you have ES than yes this would explain your symptoms. A 3DCT scan is the only way to look into the area and have them measured as best they can. Your body is out of balance and trying to get back into balance.

Linda - hoping you find this reply as I'm interested in talking with you. I live in Anchorage, Alaska as well. I sent you a message about a week ago but perhaps you've not been on the livingwitheagles website lately. Hoping this might reach you by email notice. Would love to hear from you and share knowledge of anchorage area resources.

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Oh dear you sound like me. pre and post surgery burning pain symptomatic side. ENT said TMJ. Well not so much. Take a look at the cranial nerves that can be involved with Eagle. Trigeminal will be of interest. I had very elongated styloid with carotid wrapped around it; kind of rare. Going to look into MVD and an operation of trigeminal nerve. Get a good ENT. Popsicles and Slushies hurt but may calm things down a little.

Can I ask why you going to look into MVD ? do you you have any compression of the trigeminal nerves in your brain steam ?