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Eagle's syndrome (Page 1)

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I am only posting again here because I would feel guilty not to share this with all of you. After over 2 years of constant, and I mean every single day, pain, my internist referred me to a neurologist she had met at a conference. I didnt want to go because I am sick of doctors who dont help at all. But she talked me into going so I did, and this is what he found, I have an extremely rare condition called Eagles Syndrome, it involves a pointy little bone which comes off the skull called the Styloid Process. Mine is way too long, and it is basically sticking into my jaw and throat area. The best part is, there is a surgery for it. I went all this time thinking it was TMJ, seeing a Tmj specialist who didnt help at all because in the words of my neurologist "there is nothing wrong with your jaw". It hurts there so it was assumed that the jaw was the problem.
I havent seen the surgeon yet but I will have surgery as soon as possible. I just wanted to tell all of you who are in excruciating pain and throwing money away to get checked for this condition, it really does masquerade as TMJ disorder. You can Google it to read more about it. This is just my personal experience.
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First Helper Gman21
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Users who thank metalcrystal for this post: gracetoday 

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replied April 7th, 2008
Extremely eHealthy
hey --this is good news. I wonder how many of us have this with out even knowing it.

the jaw is so complex even doctors are still learning about it
let us know what is going on with you,when the surgery is etc. ill be praying for you
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replied April 7th, 2008
Experienced User
thanks so much.
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replied April 8th, 2008
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That is great news! And very interesting. I've never heard of this condition before. I hope you will keep us updated. We've been thru a lot and I want this to be fixed for you so much. I'll be praying for you.

God bless...
Carol
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replied April 8th, 2008
Experienced User
According to the doc is is EXTREMELY rare to have pain from it, even tho a small percentage of people do have an elongated styloid process. This neurologist is suposed to be quite amazing. One thing I didnt like was the Neurontin he had me try, I was so spaced out! I really dont need another drug in the mix!
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replied February 5th, 2009
Eagles syndrome
Hey Crystal, it's nice to see I am not the only one suffering from this either! I have been to numerous TMJ specialists and even ENT's and one time someone mentioned Eagles Syndrome, but everyone refused to check me for it! How rediculous! Turns out I have an elongated and enlarged process that literally went right near my jaw and has even moved some back teeth out of place. It is a VERY aggravating syndrome and it causes so many symptoms. I give you MAJOR props for putting up with it as long as I have! Good luck with your surgery and please I am anxiously waiting to see what a drastic difference it made for you! All the best!

Gman
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replied February 6th, 2009
Experienced User
i too was diagnosed with this as well as earnest syndrome when i went to get prolotherapy shots which i thought would fix this. It didn't take and i'm still in pain 24/7. The only thing that works are muscle relaxants i feel my life is ruined from this crap. I may try the prolotherapy again but i doubt it will work and just make me lose more money.
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replied May 21st, 2012
Did you have the stylus removed before you tried the prolotherapy I'm thinking of the prolotherapy was wondering how your feeling
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replied February 19th, 2009
Eagles syndrome
Hi
I too have eagles syndrome and I rarely have a day where I don't have a headache and/or sinus pain. My doctor says he can operate and remove the bone but I may end up in further pain and there is the risk of facial muscles being damaged. I dont want to have to live with this but am scared to have the operation. Has anyone out there had a successful operation? I have had this for 5 years now and feel i must do something about it.
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replied February 19th, 2009
me too
after 5 years of all sorts of symptoms, i also have been diagnosed with eagles syndrome. the ct scan shows this crazy tusk coming down...right side...twice the length of the left side styloid process...i am having surgery march 3rd. my life has changed because of this saber tooth in my neck and i want it gone!! i will let you all know how it goes...
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replied February 21st, 2009
and me
My doctor found and removed my elongated styloid process 10 days ago, when he performed surgery to remove a mass from my throat. The mass was this bone! Previously, I had had neck CT scans and xrays, and the radiologists missed it. I hope when this is healed the pain will go away.
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replied April 4th, 2009
wow,the first conversation above, it was like I wrote it,I had major sinus surgery in 2006, right after the surgery, I started having problems, after going to my ENT several times over a period of 6 months, and getting severe case of bonine positional vertigo, I was finally told by my Dr. that quote" this isnt a ENT problem, You have a TMJ order which will also cause Myofacial pain dissorder. so 12 doctors since, Two TMJ experts, every know dentist, orthodonist, paradondist,endondist and nuerologist, three CT Scans two MRI,s I finally found someone in Houston that knows about Eagle Syndrome, I hurt more now than ever, this condition is ruining by life, may work my relationship. My most resent MRI of my TMJ showed normal, surgery for Eagle Syndrome is last hope,I am 50 years old and very active, just hurting. I will let the chat know what my outcome is
wr
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replied October 10th, 2011
Houston Doctor?
Can you please share what doctor you found in Houston that knows about Eagle Syndrome (and is able and willing to treat)?
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replied April 13th, 2009
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youtube video - Eagle's
There is nice video on google, showing
the calcified ligament. http://www.youtube.com/watch?v=czO8PFCdkWk

based on my pictures, I was wondering if I had significant ligament growth:



The image might appear small, if you would please right click, then then pic "View Image", you would see a much larger picture with ligament clearly visible. I cannot believe how radiologist has missed it.I have also highlighted the condyle area and the socket, which compared to another side is increased in size.
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replied April 27th, 2009
My own hell
Hello I am 29 years old and goin through a lot of the same fiascos as everyone else above! I have been in severe pain for a month now and have been to 5 doctors, a balance and dizziness clinic, had multiple rounds of labwork, x rays, and ultrasounds of my neck with no answers. I took it upon myself to investigate my symptoms, specifically the severe pain in my neck behind and around my hyoid bone and the feeling of a ball behind my trachea pushing everything forward. Aslo, the syncope and ear pain has lead me directly to Eagle's Syndrome! Specifically the Vascular version. I brought this posibility to my Dr. today and he agreed. Aslo he says I have Carotidynia. I really had to take matters into my own hands due to my frustration of Dr.s trying to only medicate my symptoms and not diagnose me. Wow hang in there everyone because this is terrible! I cannot believe some of the stories of people that have had these issues for years. That is just negligence on your dr.s behalf as far as I am concerned!
I will be awaiting CT scan results and no I will not trust the Radiologists findings if found normal, I will get a second reading thanks to the misses from above stories.
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replied May 16th, 2009
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re: second reading
I am not sure if just a simple 2nd interpretation of your CT might be helpful especially for things such as Eagle's. At least from my experience, it seems that unless you specifically talk to radiologist and ask him if he is familiar with Eagle's and the identification of calcified tissues on the MRI - it's a loss cause.
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replied May 16th, 2009
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It almost like you have to point them where to look, otherwise from my experience again, all they check for is to see if the joint is dislocated and probably (hope so) for any unusual masses.
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replied May 16th, 2009
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the way i did it
There is a a program that kinda works kinda not called 3DView to view MRI and CT images.

For those who have basic anatomy understanding and are out to really see what's inside your head it would be the best way. Even if the doctor is very good (or should I say has money to buy huge display) and sit with you and go through the CT/MRI images with you explaining what he sees, allowing you to ask questions, it still only allows so much time for you to interpret (perhaps even understand what is being shown). So always ask for a CD copy of your results and make a copy for yourself before giving it to the doc. Then, if you are curious, you can go as far as reconstructing the image and seeing your skull rotating 360 degrees.
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replied May 19th, 2009
Eagles Syndrome
I am a 47 year old male who has known for 5 years that I have Eagles Syndrome. I had the surgery last Friday and altho I am very sore the pain I have had for 5 years is gone. My ENT doctor did the operation and it was not as big a deal as I had thought it would be. I will be able to return to work next week and I would urge anyone who suffers with this to have the operation.
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replied August 24th, 2011
I appreciate your posting about your experience. It is a rare surgery, especially for a male to have it. I have become almost disabled and thinking it was coming from an old cervical problem was getting nowhere until I began having trouble swallowing and ended up at my ENT. He knew what it was immediately but is sending me to his specialist. I am seeing this specialist this week. He knows this syndrome well.
I hoped for feedback about your experience. I am allergic to all pain meds.
I wanted to ask you about the surgery through the external approach from the neck. I am allergic to all pain medications and have had 2 surgeries cutting into the throat tissues and 3 neck fusions.Comparing them: neck fusions were fine and I could do recovery with no meds to help... The cutting inside the throat was the most horrific thing (even when I was able to take meds back then) and I don't know how to handle the recovery when I'll have no help. It takes weeks.
How much pain medication was expected to be used in the surgery you had? Was it bearable? .....I'm pretty tough but am a human and I'm worn out...If it is similar to a neck fusion I will be able to do it....
I want my life back! :>)
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replied June 1st, 2012
Pompeya Reynoso
Where did you get the surgery and what doctor?
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replied May 20th, 2009
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Greenville
Dear Greenville,

Would you please share what where your symptoms?
How did they start? Did you have any trauma, etc?

I am also wondering if you had any complications or questions as for some reason you came to this site.

What kind of operation was performed, where did they make the cut and where you in the hospital?
Would you mind sharing what state you are from.

Greetings and wishing quick healing,
Ed
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replied May 20th, 2009
Eagles Syndrome
Ed, I had pain behind my ear along with mild vertigo and the feeling of something stuck in my throat. I had to spend one night in the hosptial and I was given the choice of a incision on my neck or through the back of my throat. My doctor was glad I chose the neck and the cut seems to be about 3 inches long and starts at the bottom of my jaw and goes half way to under my chin. Its still swollen so I am not sure what kind of scar I will have but after seeing the video of the surgery through the mouth I felt like this would be faster to heal and less painful. I came to this site to share my experience since in my 5 years living with this information was mostly negative and I wanted to offer hope and my experience with others. I am from South Carolina and I had no problem finding a doctor to do the surgery but he had little experience with this operation.
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replied May 20th, 2009
Ed, I forgot to add that I had trama to my head (a fight when I was 14) and my ENT believes that is what caused me to have Eagles.
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