eagle syndrome symptoms?

[esya]

An ENT confirmed Eagle Syndrome, bilateral.  This was after excluding dental issue, eyestrain or problems, TMJ, stroke, etc (fI have a serious family history and PAD, personally).  The muscle relaxant my md gave me to try for a week last spring worked the best for the pain, but put me to sleep so I discontinued it.  

I went to a neurologist in August bec of 5 months of pain.  It is located in front of ears, behind jaws, radiating up to eyes and down to throat--adams apple and the back of my neck feels stiff.  I have since had periods of double vision, ears ringing or throbbing, and increasing difficulty swallowing.  I was missing several days of work at a time, he put me on the anti-seizure stuff they are using now which allows me to work but not effectively.  Took me off analgesics. It feels like I have the headache and sore throat of strep throat all the time, just less or more depending on the level of the Depakote.  My ENT doctor says he does not do or recommend the surgery for eagle syndrome; could my headaches be problems from a blood vessel growing into my ear or what?   I am deeply depressed due to the debillitation of my life from the pain.  Who should I go to for a second opinion?  What should I ask for? I do not have a history of depression before this condition.  I am 53 and female.

[4wendy]

What specific test is given to determine that a person has Eagle Syndrome?   Will a Fiberoptic Endoscope Evaluation of Swallowing test show if you have Eagle Syndrome or not.    

[LollyM]

I had a CT done this week after an xray failed to confirm. Says both styloids are elongated but without any inflammation or fracture. I've had throat pain, sensation of something in throat, ear pain, face pain, headaches, neck pain. Pain is 24 hours a day. NO ONE KNOWS WHAT EAGLE"S SYNDROME IS WHERE I LIVE or thinks that what I have has any connection. BEEN to over 20 doctors. THis has gone on for 2 years. I've taken every drug that can be taken without any benefit. I live near the finest clinics and hospitals. No doctor will even look up the syndrome. They just shrug their shoulders and say sorry, youll have to live with it. Does anyone find any relief by eating or laying in a certain position?  How long are your styloids on your tests? I've had every test there is, endoscopies, colonoscopies, xrays, ct's, bloodwork, swallow tests, larygnoscopies. No other test shows anything except the CT.  Because this seems to be such a rare syndrome, no one wants to do the research to help us. They only want to help people that they can give a pill to to keep quiet. This has ruined my life . . . .  

[Pepdal]

Diagnosed with Eagles in Sept 2008, age 40.  Mother had tongue cancer in same spot on left 5 years ago, so had it checked out and came back with Eagles.  CT scan shows ossification of stylohyoid ligament and 3 lumps in neck.  ENT dr says "can't feel anything" in neck.  Did scope up nose (UGH!) and says have reflux disease and gave Nexium.  Did nothing to help.  Cost a fortune!  Feels like have something stuck in throat, always clearing throat, hurts to chew food, hurts to turn neck.  Going for 2nd opinion.  hopefully something comes out of it.  going to same dr that treatmenter mother.  

[Peachy23]

I was diagnosed with Eagles in March of 2006 after going to 2 ENT doctors and having my tonsils removed because they thought it was some kind of cyst or tumor in my tonsils.  My symptoms were the foreign object in the throat feeling, trouble swallowing, food getting stuck in my throat, sore throat 24/7, voice changes.  After they removed my tonsils the previous December, I still got food stuck in my throat a couple months later and I still felt the huge lump in my throat... hence the diagnosis of Eagles in March.  I figured since it was so difficult to find a doctor and treatment was hard to find I'd deal with it until the symptoms became so bad which was this past year.  I've had debilitating ear pain and neck pain.  Severe headaches that trigger migraines.  And I have been constantly clearing my throat.  Luckily I live near a bunch of learning hospitals so I called around for 3-4 months before finding gold...  I just had the surgery and it went great.  I am about 3 wks post op and most of my symptoms are gone.  I've got some residual pain which should go away when the swelling is gone, but nothing like it was.  Here is the link to my doctor for those that have had trouble like me looking for one.  

http://www.hopkinsmedicine.org/OTOLARYNGOLOGY/gourin.html

Good luck!  

[Ed_monton_guy]

Just wondering if anyone pre or diagnosed with this has had numbness in the areas of the face neck scalp - toungue numbness etc VS pain. <<< CAN anyone help me on that one PLEASE !

Once when having an attack, facial numbness and fast heart beat, I layed on my left side with left side of head on a sofa arm, and almsot EVERYTHING went away instantly.

I do have C spine spondylosis (osteophystes), some some other friends, doctors say that what I am experienceing is not likey from this. They said it would radiate down and not up into the face and head area.

S-O-B am i confused.

My friend was confirmed diagnosed today, me - I still have multiple symptoms of this monster. Had had to be persistent and see 2 specialists to get a confirmed diagnosis, I pray that he does not havbe the vascular form from what I read. I am scared for myself as well.

I;ve had CT / MRIs of head and neck - seen a Neuro twice who never heard of Eagles Syndrome (great) / had corotid artery U-Sounds for concerns of plaque release and TIAs - all this came back clean - which is good dont get me wrong.

When we were kids / teens we used to crack our own necks alot to relieve tension in them  - oops. And I had 2 whiplash like injuries to the neck area.

convincing docs that this thing E syndrome exists, even if they buy in - they make money on prescriptions and multiple visits - so educate yourself yourself and frustrate them instead of you being frustrated yourself.

OK - I am done on this - its hard to talk about it without getting mad when you feel like you are the only one who cares ....

[esya]

Just a followup.  I did not go to another ENT specialist bec he said the problem with the idea of doing surgery is that my styloid growth(s) were not big enough to warrant surgery.  Since I agree with a conservative approach to surgery, I checked it off and went onto the next item.  I had each other doctor look at the MRIs, CATs, etc that I already had kept a copy of.  

I had a neck MRI/xray (can't recall)  by a trusted back doctor who told me I now have osteoarthritis in my upper spine.  I then asked the following question:  could the pain/inflammation in my head, upper back neck and more recently, upper shoulders, be aggravated by the fact that I have large breasts (which get saggier with age) and my bra straps sit in an unusually deep dip in my shoulder bones and possibly aggravate the many nerves that go through the area?  

I have been informally advised via another (web doctor) that I should consult with a plastic surgeon.  I think that the conclusion here is that I have a set of conditions, any one of which might not be symptomatic but together they cause pain.  I have used the pain blocker for over a year now and it works about 70-80% but I am vigilant about keeping the prescription  around, as I become debilitated without it--but it is the same debiitation as I had before I started it.  I don't call that addicted, I call that medically necessary.  

So my next step is to do that.  I just decided that there is only so much time and money I can devote to consultations and that many doctors look at the human body like the story of the wise men and the elephant--they see through a pinhole what should be looked at with a wide lens.  It's been more helpful taking the wide view when I go to them--for the most part they don't see pain as disfunctional.  One thing I do do when I go now is I don't take my meds and put on a happy face because they need to hear how it is when it's NOT working well.