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.

[laurenday5]

Bubba4783

Where is your doctor located? Everyone is suggesting finding "an experienced ENT" but where the hell are they? I don't want to be a guinea pig and I certainly want to figure out how to start a study into this rare syndrome.

[morgan566]

Hi spice,late response, but i get most of the symptoms all others have,also dystonia,  strange thing also, i see my heart beat in my vision,

[Kandi29]

I am unsure of all of what I have, but I don't have dystonia but I see my heartbeat in my vision too.

[Khooshboo]

Hi, I am a 48 years old female. My doctor recently found out that I am suffering from Eagle syndrome. before my doctor was thinking It's a 'Trigeminal Neuralgia'. I've sharp shooting pain comes to my lower right jaw. my neurologist were treating me with the medicine name ' carbamazepine' and I am still taking it. when the pain is severe doctor give me 'morphin' with saline. I haven't have any medicine given for 'Eagle Syndrome'. Doctor also told me 'Trigeminal nerolgia doctor mix up with 'Eagle syndrom'. I've seen an specialist for 'Eagle syndrome' and he told me i don't have to go for surgery yet. The pain that i go through is horrible. Please share what's happening and how doctor treating you with me/ us. thanks

[ember479]

I'm thrilled to hear UAMS specializes in Eagle's! I'm in Fayetteville, and didn't know there were any good specialists in the state. Can you tell me what doctor your husband is seeing, and what department/clinic? Thanks!

[DLDITTA]

Did you use a surgeon who specializes in Eage Syndrome - ifnot find one and make an appt

[DLDITTA]

They only get worse as time goes - go see a Eagle Syndrome doctor specialist asap - one is UAMS Little Rock - John Hopkins and UT of Dallas  - goodluck

[DLDITTA]

crazy

[DLDITTA]

I have read more success rates in going thru your neck - when they go thru the throat it usual returns within one year

[DLDITTA]

Call UAMS in Little Rock or John Hopkins - they are specialist in this area.

[DLDITTA]

My husband has Eagle Syndrome and we are looking at different hospital surgeons now - can you send me the name of yours.  We go to UAMS next week then John Hopkins.  Trying to get the best surgeon we can.
My email is ***@****

[DLDITTA]

My husband has been diagnosed with Eagle Syndrome - we have an appt with UAMS in LIttle Rock - who did you see at John Hopkins I am overnighting my paperwork for him there today - I have read great things about them for this disease.  I am so glad to hear you are doing well.  If you get a chance please send your doctors name and keep me updated.  Prayers.  My email is ***@****

[DLDITTA]

I have found 3 places that specilize in Eage Syndrome - UAMS - Little Rock, UT of Dallas, and John Hopkins - do not go to an ENT to have surgery go to one of these specialist - I am sure there is others but I did extensive research and so did my local doctors - my husband is scheduled on September 16 at UAMS - I will keep you informed.  

[dianec663]

Anyone ever had an oral surgeon do this?

[dianec663]

who is your doctor.  Please share with us

[dianec663]

Did you get your surgery?  How are you feeling.

[BigMidgetMama]

How are you doing? Was surgery a success?

[BigMidgetMama]

That makes me sad that it didnt last. Did you ever have more surgery since you last posted? How are you doing now?

[BargainBetty46]

I have been having pains in my  throat for awhile now,it hurts more if     Italk,some times it feells like some one strangeling me a I also get     pain,sometimes when I turn my head or neck,went to ENT,he did ct scan,said it was eagle syndrome? what can I do for it and should I go to different kind doctor? I'm 46 and overweight,have throaid problems,high blood problems,very hyper,tired a lot and work 40 hrs,most of time on my feet.drive about 40 miles each way to work,no kids and no pets,no friends,husband very keep to our self type people,was not raised that way,but conformed to his ways,he is 61,very French,me mixed nationality?

[Lori682]

Hi, this is a long shot since this post was 6 years ago, but my wife has long suffered with face and throat pain for years and has had a difficult time finding a doctor in Canada that will do the surgery.We live in Victoria, BC. also. Can you give me the name of the Victoria ENT you saw that did the surgery.    

[brenda99x]

Definitely locate a doctor who will do surgery.  It completely gave me my life back!  My doctor went in from the tonsil point.  I have read about surgery from they outside, but mine went inside.  It was absolutely amazing.  If you check out a site called livingwitheagle.org, they have been creating a list of doctors who have helped them.  Find one and go!!!!   It will save your life.  

[crmfghtr]

I just had the surgery June 2nd.   I have elongated styloids on both sides.  He did a partial removal on the longest one.  I cant understand yet what has happened but all symptoms have gotten worse.  Dizzyness, tinnitus and a migraine that has lasted 7 days now.   Something is definitely wrong and I called the surgeon and he said he is baffled.

[Shareourinfo]

I had styloidectomy surgery in 1994 on the left side, and another in 1998 for the right side.  Both were elongated, and the symptoms presented were different in each case. The elongation on the right side was not present at the time of the 1994 surgery; it apparently grew in the following years until facial pain brought me to surgery. Both doctors were in Santa Monica, CA.  I am not sure about the first surgeon's availability, and I would not recommend the 2nd surgeon due to bedside manner.  However, surgery in both cases relieved the symptoms immediately for at least a decade.
I am looking for yet another in Southern California if you know of one, as I am experiencing  pain on the left once again.  Anyone have any recommendations?  I will also share my experience. Each surgery was not a complete removal but a 'reach in as far as the instrument would go and snap off the end' type of surgery, through the mouth, so at least half of the elongated styloid hyoid complex was remaining after each surgery.  there is much we need to share with each other.  I am disheartened to hear from this chat room that the medical community knows very little more than they did in the 1990's.

[morgan566]

I also get clicking in throat and very frustrated lkke yourself, have you found an answer yet please?

[hockey1994]

Could you give me the name of the doctor who performed your procedure at UPMC. I am from Pittsburgh and in the process of locating a doctor who is familiar with the condition.