BACK & NECK COMMUNITY
Eagles Syndrome

Eagles Syndrome

I was diagnosed two years ago with Eagles Syndrom (syndrome) following MRI and XRAY investigation; and that was proceeded by 3-4 years of discomfort. The pain has only increased in frequency and now is a serious detriment to sleep. In the past year I have never made it through a night without waking up with sharp pain numerous times a night even with some medication.  Various doctors have stated that taking a constant regimine of over the counter anti-inflammatory drugs is not wise considering mild hypertension; but these drugs do lessen the pain.  Even an anitbiodic has been known to lessen pain for a 4-5 days.  It has taken years to determine the cause and I am still unconvinced.  As a professional, late in career, I spend many hours at the desk holding my head in one position or after hours just reading for relaxation.  This only aggrevates the problem.  I can do all manner of work outside or inside and the pain is less or not as noticable; but when I settle into any one position, prone or sitting up, the pain becomes more pronounced. Neck muscles are always tight.  The pain is always on the left side of my face and feels like an inflamation (inflammation) around the eustacion tube, sometimes right behind the ear drum but always I can push into a region under my left jaw and imagine that I am touching the location.  Pain is centered in that area and radiates down my neck muscle and on my jaw and ear. Too much air conditioning sets off the pain.   I don't know if it has any bearing but my father complained of something similar as he grew older but it was never identified. He said it helped not to have cold air on the back of his neck so he kept his neck covered though still had some pain
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Who specializes in this issue and can provide any suggestions.  My concern is that the malady is only getting worse with time.  I need an expert willing to discuss my options.
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Given the pain you have was surgery an option?  If you have an elongated styloid process have you tried feeling in the back of your throat where the tonsil area is? I can feel a bone trying to come through on my left side.   When I touch the area it sets off my symptoms.  The area under my chin starts to spasm.  My left eye will pull/tug off and on during the day for several days.  I'm not going to touch it again.  I still have to find a doctor that treats Eagles Syndrome in my area.   Several years ago this spasm was a nightmare.  I think I went over 4 months with 1 hr sleep at a time it hurt so bad.  Gradually it let up, but it was so sensitive that if I touched the area under my jaw, it would set the symptoms off for days.  It felt like a bad toothache in my neck. It radiated across under my chin and down the left front side of my neck. I also had other symptoms, like a tightness on left side when I swallow, like I've got a lump there.  I get pain when I lower my head and hold it to the left.  I can't sleep with my head turned left or right all the way or my neck and ears start to hurt.   I was diagnosed with Dystonia and Myofascitis. However after finding this bone in the back of my throat and discovering I could set off the symptoms and then seeing the 3-D CT Scan of the elongated styloid process,  I am convinced this is the cause of my discomfort.  My DDS told me I do have Eagles Syndrome. I also tried Chiropractic, the manual kind set off my spasms so I switched to one who does activator.  No problem going to him.  
The spasm is not like is was several years ago when I couldn't sleep.  I wanted to write you and tell you what has helped me in case it could help you. First when the spasm was in its evil stage a doctor prescribed me Lorazepam.  It didn't cure it, but took the edge off it so I could finally get some sleep.  I still take it, 1mg pill.  I try to take only 1 a day at bedtime so I can sleep good.  But if my neck gets to stiff or sore and Tylenol isn't doing it I will take 1/2 to 1 mg during the day.  Muscle Relaxers, Ibuprofen,  just don't seem to help.  I also started getting Physical Therapy from a good therapist. When I started going to her I couldn't even feel the muscles, bones in my neck.  My neck was just solid feeling.  Now almost all the swelling has gone down.  The area that hasn't gone down probably won't as I feel its because of the elongated styloid.  
Like I said, I'm in the process of finding a doctor who treats this.  I've done google searches on the internet.  There are a lot of articles on the subject.  Most say go to a ENT doctor who knows how to treat this.  That means calling around.  I plan to call an ENT I used to see and ask him if he treats this, or knows someone.  I'm also asking my neurologist.   I'm also asking my DDS, who did the CT scan.  
Most of the sites say if you can trigger the symptoms like I can surgery helps. Time will tell.  Good luck.
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