I think you need another opinion. Have you discovered anything since you wrote this? I am 53 also and have Eagles Syndrome. I'm in the process of trying to get to a doctor who treats this. Write some more if you have gotten some help.
I'm a 49 year old male.
I had surgery about 1.5 years ago to remove my elongated styloid process. Had one good year, symptom free after that and then slowly pain returned in the same area. However, I no longer have the foreign body sensation and I don't have much problem swallowing. The pain is more like a muscle spasm. A cortisone injection gave me 3 more months pain free. Another cortisone injection produced no results. I suspect that I'm experiencing problems with the stylohyoid ligament re: calcification or ossification and will have to look at further surgery with my surgeon in Victoria BC
I saw three specialists before him, none of whom recommended or was willing to do surgery.
Basically I'm happy I went through with the surgery even though it didn't last. It just amazes me how big a **** shoot the treatment of this condition is.
Even my current surgeon, an Ear, Nose & Throat specialist always says to me... "you know as much as I do".
I hear talk of Prolotherapy (injecting irritants to provoke the bodies natural healing process) but not much concrete evidence.
I wish the best for all you Eagle's Syndrome sufferers.
I was diagnosed with eagle syndrome in 2004. Before that all dentists told me I had TMJ. The oral surgeon who did the surgery told me that the pain sometimes would come back. I had the surgery.. but my styloid process was not removed, I think the tip was fractured. I was find for about a year and a half and then the pain slowly came back and is now worse than before. This is really frustrating. I read somewhere that if the styloid process is completely removed, the pain would go away. Not sure if this is true.
I have eagles syndrome thers not much info on it would like to know moore I am 53years old
I am doing research on my own as I have had sharp eye pain for 5 years, pain in neck shooting into ear, on and off teeth pain (eye, ear and teeth are in good condition), yet they continue to hurt.Constant ringing in ears. Last year have had trouble swallowing and since June 2008 have had pain in throat and neck, Pain in throat is like pressure and trying not to cry, but much worse, It stings and burns after talking very long. Now I have pressure pain in my chest, Have had EKG, xrays-heart and lungs all good. I have had GERD and Barretts for 20 and 10 years. ENT says have LPR, and Hyoid bone inflammation. I go back to drs next week and going to ask if I have Eagle Syndrome. Also I think pain in chest is Cricopharyngeal Spasm, all makes sense.
I am 21 years old and male. I havent been thouroughly diagnosed with eagles syndrome yet but I am 100 percent sure I have it. I am a very smart guy and do NOT trust what everyone says to me especially the so called "professionals". I can literally feel and SEE the stylohyoid process sticking out in the back of my throat but NOOO everyone told me its all in my head and I couldnt possibly have such a rare entity. What should I do? I am on my own with no health insurance and I dont even know who can treat this! Please help! If I leave this untreated what could happen?
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.
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 . . . .
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.
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.
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 ....
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.
I have read several people cases and can say that these are all the symptoms I had for three years. Keep in mind I had seen many specialist and had several dx testing, like MRI, CT, Pana, xray and so forth. Finally I met a wonderful doctor @ Standford University via TV and emailed him. I had been to about 15 specialist who thought I was crazy. Ended up I had a broken bone called the styloid process growing out my throat and growing on my hyoid bone. It was so painful and nothing would get rid of the pain. My wonderful Doctor I found diagnosed me last year. I had so many treatments and medications and misdiagnoses. What had happened to me is:
I had severe agonizing ear pain and problems with swallowing. My shoulder and arms went numb and I eventually ended up in the ER 3x because I was having seizure like movements and throbbing beats of lights. I could not hardly speak when it got so horribly painful. Most the time it was severe ear pain and throat pain. You could see the redish purple marks in the back of my throat where the bone was trying to come out.
Since I had the surgery about 14 months ago my stabbing throat pain is gone. I still have ear pain half the time but at least I can control it with some prescribed medicine. The doctor told me it would take about 16 months to heal. I also was treated for TMJ for two years. That was a misdiagnoses and 40,000 dollars late without insurance. I would hope not only patients but doctors would read these notes and make comments. I would like to get rid of my ear pain all the time. So to some maybe I can help and to others that have had the surgery or a doctor, can you help me with my post op ear pain.
Respectfully to all and hope this helps
OH MY GOSH young lady. Deb I am sorry to hear that, ok, this thread has me so covinced that I should get nuclear imaging done (as far as I know the only true way to accurately look at the Styloid process and corresponding styloid ligments).
Any of these other symtpoms ring a bell (bad tinitus joke):
Ringing in the ears, somtimes so bad it causes me to talk louder. Not always consistent. The pitch changes when I clench my jaw - for what ever thats worth.
Opthalmic migraines - this was a great read i found about migraines that do not really cause pain, but visual disturbances such as sensation of too much *white light / bluriness* (possibly the same as the pulses of light Deb referred to.
numbness like crazy, throat - like its trying to close, lips, side of the face, localized parts of the scalp, neck for sure, toungue on the affected side, nose and cheakbones, sometimes arm
my typing on my left (affected side) ***** - I make many typos as though my left arm cannot keep up with my right
vertigo - dizziness, really, who needs alcohol (which makes things worse btw), sometimes I feel like sitting around vs. going for a good walk, I am so bloody dizzy
Pain / Pressure in the ear - like eustachian tube wont pop on an airplane - Otalgia i guess is that word ...
Sinuses - on the left again - pretty rough most times and when docs take that little flashlight to the ears and nostril - they say ears look ok, and sinuses are only a llittle inflamed - NASONEX IS NOT GOOD FOR HIGH BLOOD PRESSURE - HAAALLOOOOOOO .... and sinus meds do not address the root of the problem PAL !
Itchiness under the skin, certain spots like knuckles tricep are on the wonderful left side again
Thermal changes - sometimes the left hand goes so cold, knuckles get purple.
overall, again - MRIs / CT / untlrasound of corotids / saw a Neuro Twice / and most doctors write this off to other more common possibilities (break out the good ol presrciption pad for anti-inflams or anti depressants for stress)
IMS - intra muscular stim (which is like accupuncture right into muscles) for the neck area - initial injury site of 2 whiplash like injuries
Naturopath - Cranio Sacral therapy - AMAZING, best remedy yet, for much more than just potential EAgles Syndrome - finding a certified practioner is challenging sometimes - BUT WORTH even if not covered by any plan.
Advil / antinflams - hmmmm - try to avoid, also mixing with asprin is HIGH RISK for ulcers man, talk to a GI specialist about that - OK, I`m niether a doc or a specialist - be careful popping any pills gang
Vitamin D - seems to help control muscle twitches I also heard really good things about fish oil, for brain function and CNS health - not just the Omega 3-6-9 **** everyone has at home - fish oil is more pure and expensive, many health stores arent even educated as to its potential - last person I saw tried to sell me coconutu oil instead (not sure if its a fair substitute, sorry ... )
Best of Luck to all, and God Bless
Hi, I am 24 and I have been suffering from all these symptoms for more than a year and about an hour ago I casually discovered the Eagle's Syndrome, which befits all of my symptoms perfectly!! I've been to so many different doctors and most thought that I was crazy.
I have suffered a great deal thinking I might have had many terrible diseases, since doctors wouldn't even consider that it wasn't stress related...
I know I have to be tested in order to be sure but this just makes all my bizarre symptoms fall into place.
Anyways, I do have a question which I don't think I have read before: Does the tinnitus go away after surgery? I know it isn't life-threatening, but it sure is excruciating!
I wish you all the best of luck!!
Thanks for all the posts!
Hi folks - I read of a great non surgical intervention called Prolotherapy, specifically used for the treatment of Eagles - IF someone is truely and accurately diagnosed. Sounds tricky because you may want to take a doctor's diagnosis BUT then use a natural practioners / Naturopaths remedy.
Prolotherapy in general from what I read involves injecting chemicals that naturally occur in the body (see google for det's on that one) AND / OR a mixture of dextrose. So the injection intentionally causes inflamation and "tricks" the body into a much more rapid rate of healing.
SO - if someone is a candidate, what I have read so far shows positive results (case numbers or stats I don't have), AND IT IS NON SURGICAL. There are also techniques that special chiropracters can perform that can re-align the c spine and shoulder girdle in treating the actual root cause of the condition (as most have probably read about neck injury / whiplash / styloid process or ligament damage).
I still have numerous - almost all - symptoms of this "pain in the ear" coming and going, but am not yet confirmed an Eagle.
Good luck to all - hope this helps.
Best intervention for ME so far? Cranio-sacral etchnique, a form of energy balancing performed by a Nauropath / or holistic Health Practitioner.
I am 28 years old female and i have just been diagnosed with eagle syndrome. The doctor wants to do surgery and cut the styliod and he also wants to remove my tonsils. Im not sure if i should get a second opinion or just have the procedure done. I have read about it growing back and he symptoms returning. I'm just tired of dealing with the pain and the headaches. I really wish that i could find some anwsers to my questions. If any one has any suggestions please let me know.
I am a 43 year male, having similar symptoms - ringing, stuffy ears, facial/jaw tightness and pain and a constant dizziness (mild unsteadiness) since last 4 months.
Currently exploring TMJ investiagtions/treatment.
Greatly appreciate if you will please share the details of the dr you found at Stanford Univ?
Thanks and god bless,
Just went to the dentist today. Have been having throbbing neck pain for three years off and on. The only way to relieve pressure is by pressing down on my neck and holding. Sometimes it goes all the way to my ear. I also always feel like I have to clear my throat.
The dentist suggested that it may be Eagles syndrome. I have an appointment with an ENT this month.
Does this sound like it could be Eagles syndrome? Anything to bring to the doc to help him diagnose?
I was just diagnosed today. I've always had lots of sore throats and ear infections, but I had never seen an ENT until this month. My doctor referred me to one years ago, but I never went.
My doctor said the recovery from surgery is rough, and the verdict is still out on whether it works. He also thinks I am too old to get my tonsils out if I only get 2-3 sore throats a year.
If the pain gets intolerable we will talk again.
I am relieved to have a label for all of these problems I have had over the last few years. I had convinced myself it was brain cancer.
Does anyone else get nerve pain in their face? I need a root canal on the opposite side, so I thought the nerve pain was related to that. I have it on both sides, but one side is signifigantly longer than the other.
Anyway, I got to suffer through tons of tests and ex-rays, now I get even more this week for the root canal. wonder if my endontist couldn't have diagnosed this when I see him on Thursday. I could have saved $200.
Also, as much as I avoid unneeded antibiotics and elective surgeries, I hate spending that kind of money to get nothing done. But at least I feel a little vindicated and slightly relieved.
I have to
The symptoms are those of Eagles syndrome . Two possible causes of the syndrome are elongation of the styloid process and ossification of the stylohyoid or stylomandibular ligaments. Surgery is the only treatment of the elongated Styloid process . Please go for a three dimensional CT scan to confirm the diagnosis . and consult another ENT surgeon for a second opinion . Hope this helps you . Take care and regards !
I am 39 years old and I've been having a combination of upper cervical pain and facial pain for the past 10 years or so. I have been going through hell at times and still looking for a solution for this problem that so far seems to have no real name. The other day for the first time I came across Eagle Syndrome and am trying to find out more about it. If anyone can help based on my story, that would be great.
At a very young age (1 or 2 or so) I had a tonsillectomy. And for a good deal of my life I've been having all kinds of ENT problems on the right side of my head (no problems on left side at all). Among other things Eustachian tube and nose often painfully congested, the feeling of a 'lump' in my throat (although not as prominent as many other people describe it here), radiating pains from my neck to my head (occipital area). At first only facial pain presented itself and I had a good deal of (unnecessary) dental work (multiple root canals) done. And later severe neck pain (at night far worse than during day) became the main problem.
The doctors (multiple ENTs, neurologist etc) haven't been able to diagnose it and have been on different kinds of pain medication, some of which were opiates. But the pain is still prominent (especially at night, can be horrible). My pains vary with time, sometimes 'okay' weeks, sometimes horrible weeks in which I almost don't sleep.
One thing someone here wrote (Ed_Monton_guy) wrote is remarkably similar (and haven't read about elsewhere). I too find that when the pain is bad it can sometimes miraculously *completely* disappear when I lie on my left side putting my head on something slightly higher (like my arm, or sofa arm). So far no doctor or chiropractor has understood this, yet it is very true. Is this a clue? Are there more people out there who have this?
Or any other information on whether I may have Eagle Syndrome would be great.
Thanks for your help, really appreciated.
I was diagnosed with Eagles syndrome about a year ago. I was just glad to know what it was. I had most the symptoms that you all had. I get ringing in my ears, tingling head pain, numbness in the neck, pain in the neck and headaches that can last weeks.
When it first started I got terrible spasms in my head, especially the temple area. I also got terrible headaches. It finally got a little better after about 3 or 4 months but it still lingered. I was wondering if anyone else had similiar experiences WITH THE SPASMS?
I am not familiar with the spasms.
Since I last posted I (hopefully) have made some progress. A high suspicion for Eagle's Syndrome has been found and I will be having surgery within the next few weeks. I wrote more about it on another forum; if you like, have a look here (weebo):
Although I am not familiar with it, the spasms do make me think of a condition called 'typical facial pain' in which a nerve in the head is compressed by a vein or artery. As far as I know that can cause spasms in the head and it is sometimes resolved by a procedure called Micro Vascular Decompression (MVD); an MRI should show it. Not sure it applies, but maybe this helps.
Good luck, the spasms must be very annoying and I hope you get them resolved soon.