Wadams,
Thank you for your reply.
I’ve done MRI,CT,and couple of X-rays for these 2years and nobody ever pointed out about ES. It doesn’t mean that I don’t have the syndrome, but I also search for earnest syndrome and barre-lieou ( I think you mentioned about these before!?). I’m just desperate to get a right diagnose…
Agree, all of your symptoms sound like Eagles. I would recommend getting an OPG. Eagles is very viable to the untrained eye on an OPG (straight white line that is often dismissed by non believing practitioners as ‘a possible shadow’). But is at least visible to you, less invasive and enough of a point of reference for you dentist of specialist to want to look into it further
Sorry what is OPG??
Orthopantomogram-- a panorex -- dental xray
My ES was clearly diagnosed w/ one CT scan. My extended styloids were crystal clear.
:)
Isaiah 40:31
wadams said:
Orthopantomogram-- a panorex -- dental xray
I have confimed Eagle's Syndrome and my constellation of symptoms is exactly like yours, except mirrored and on my right side. When I stand up quickly, I can usually feel that part of my neck throb. I can still sneeze and yawn without trouble except on the worst days.
Diet, weight, and exercise have helped me. I'm 5'7" and about 140lbs and with good overall health. However, when I went through a period of eating mostly crap for food, I gained weight and the pain worsened. I went through a phase with chronic neck pain extending to my jaw, my shoulder, and the right part of my chest with also a pain behind my right eye.
I have changed my habits since then and the condition is improved, but not gone. And I still can't use a vaporizer if it can't blow the vapor in my mouth for me -- pulling through a vaporizer exacerbates the condition the next day. Obviously there's a lot of inflammation going on and we have to keep an eye on it.
You really need either a 3D dental scan around your neck or a CT of the neck like I had in order to get a solid, confirmed diagnosis. Also, when my ENT gave me a cortisol shot, and she was an expert, I could tell that she was trying to get the substance around both sides of the styloid process; there was a sense of hardness / stiffness when there should have been a sense of flexibility - to me, this confirmed my diagnosis.
I haven't had it worked on, because I am not so amazed by surgeons around here and I don't know if I want one of the locals to work on my precious arterial area. I probably should have the surgery though.
Lots of other things could cause your symptoms, so it's important to get some imaging done so you'll know for sure.
They say Eagle's is really depressing because it's hard to remit medically and the surgery is only sometimes effective -- I have found that maintaining my health helps a lot.
I had that happen as well. My ENT wasn't experienced with Eagle's, so to get a diagnosis I asked her to consult with a specialist. She did and she came back all excited because I think it was the first case she'd ever seen, so I could see the medicine nerd on her attitude and it was funny. Then she told me, don't worry that a wikipedia article says risk of stroke because that doesn't apply to me. I don't know why. But yes, it took a second physician to catch the dx.
Chizuru said:
Wadams,
Thank you for your reply.
I've done MRI,CT,and couple of X-rays for these 2years and nobody ever pointed out about ES. It doesn't mean that I don't have the syndrome, but I also search for earnest syndrome and barre-lieou ( I think you mentioned about these before!?). I'm just desperate to get a right diagnose..
Well do worry as it can cause death and has in many undiagnosed cases. I had one surgeon excited also as he had never had a case like this. So he went in transorally and snipped a piece of skin off the roof of my mouth. When it was actually done right they had to cut my neck open (Externally) on my right side and it was don urgently as it went on so long I could not eat, talk, and begin to have seizures like problems. For one year I was bed bound as the nerves on my right side were pushing through my throat. You will have side effects and they vary depending were the bone went. I had a right side done and it was 5 inches long with burrs on the side. My left side is longer but I have no symptoms.
wadams said:
Chizuru,
I don't know. My diagnosis came from a general dentist. Since then, Oral maxillofacial surgeons, ENTs, and neurologists have refused to acknowledge that diagnosis. Lately, I have been jumping through the hoops of a second neurologist just to prove that all the ridiculous conditions he wants to rule out are not the cause of my symptoms. My next step is to schedule another appointment with the oral surgeon, this time armed with MRI results. It seems to me the most logical that either an oral surgeon or an ENT would be the one to make the diagnosis. I cant for the life of me understand why so many people have trouble getting a diagnosis of ES. It's almost as if physicans are scared of it.
I did go to a dentist and was treated for TMJ for 2 yrs. It was a big joke. Go to a doctor that knows and can see with the trained eye. My Doctor I flew to in Palo Alto, California. I live in Yellowstone Park and I had to drive 3 hours to any large hospital and 10-15 MRI's later no dx (diagnoses). Trained eyes and experience is your hope. This is a rare disorder that is why it we often are sent to many other docs.
dnurs4u said:
wadams said:Chizuru,
I don't know. My diagnosis came from a general dentist. Since then, Oral maxillofacial surgeons, ENTs, and neurologists have refused to acknowledge that diagnosis. Lately, I have been jumping through the hoops of a second neurologist just to prove that all the ridiculous conditions he wants to rule out are not the cause of my symptoms. My next step is to schedule another appointment with the oral surgeon, this time armed with MRI results. It seems to me the most logical that either an oral surgeon or an ENT would be the one to make the diagnosis. I cant for the life of me understand why so many people have trouble getting a diagnosis of ES. It's almost as if physicans are scared of it.
Sounds like TMJ but this often can be ES also a rare condition. Reflux is not in relation to ES or TMJ. It might be you suffer reflux because of your pain. This causes acids in the stomach when stressed with pain. The ear Symptoms sound like ES as I have had all your signs. I never have Headaches but have researched some people with ES to have them.
I would almost be certain of it. The longer you wait the more damages occur.
This is a lot like the symptoms I have. The difference I HEARD, not experienced..is that TMJ is more a shooting/stabbing pain in the ear. I never experienced that. It has always been a deep deep intense ache in the ear and throat. At first I thought I had strep throat but then realized that all the pain was only on the left side. I would suggest a CT scan as they are the ones that can see the styloid process. I was lucky enough to get to see an ENT right away that diagnosed Eagle's and wouldn't let me give up until we found someone to help me. I am actually going tomorrow afternoon for surgery to take my left styloid process out at Nothwestern in Chicago by Dr Bove. After seeing MANY diffrent "specialists" he was the only one to say..Yes, you have a problem and it it one of two things..Eagle's or a nerve (I can't remember the name of it) that runs along the same line as Eagle symptoms but he did ASSURE me that he was going to take care of me no matter what!!
As a dear doctor of mine once said DO NOT GIVE UP UNTIL YOU FIND THE DOCTOR YOU FEEL IN YOUR HEART YOU CAN TRUST!!! He/she is out there and it may take some digging so keep the shovel always close in sight!!
1 Like
I have similar symptoms. I have the feeling of food being stuck in throat i seem to favor the left side i dotn chew on that side like i used to. Yes i went to the dr had ct done had esphogram done. I went to ent the ent and family dr both said reflux and put me on omapozol. I do not notice any diff on this med either. The ct with contast i had sugest i have eagle syndrome but to corrliate clincicly i did that with an ent he said i dont have eagles. I am not imagining this cant swallow like your being strangled it is very annoying and i am starving.
also have you ever been to a chiropartor? I been going to one for 15 years now because of headaches. It dose help me for that. I have told my chiro about this eagle syndrome and he is not familar with it but is looking this up and reviewwing my ct scans.
I have all the same symptoms plus tinnitus. But should tell you, been to 4 surgeons now who do Eagles surgery, and every single one insists that it doesn't cause anything else but throat pain, forget headaches etc. I of course find it highly unlikely that so many people here have your same symptoms, but good luck telling them that. Anyway I think you are a very likely candidate, ask for CT of area.
Sounds like it to me as well ^^ After seeing 2 ENTs thou I got refereed to Associated Oral & Maxillofacial Surgeons of Peoria, IL. I was once again told that they didn't see anything only to have them call 2 weeks later cause the found something. PRAISE GOD! cause going back led me to finally finding out that I had ES. I had to have a CAT scan to see the ligaments that had calcified,
As far as the pain in your eye it could still be ES but also I just wanted to let you know, a friend of mine was a having bad headaches and a constant sharp pain in her eye. She ended up having a surgery, it was similar to ES, it was a calcifying bone that was growing off her nose bone. It was sharp like a toothpick and poking her in the back of her eye! She doesn't remember what it was called thou. She tght "Nasal Plasty" but I don't think that's it...Something to research...but rest of symptoms sound like ES
It took my current ENT about 30 minutes to diagnose my ES, which sounds like your exact symptoms. After countless MRIs, CT Scans (with and w/o contrast), Ultrasounds and scopes, he (Dr. Yun of E-Town KY) ordered a xray that showed my elongated styloids, 3.7 cm L/S 5.3 on the right. I've now been scheduled for surgery.
Best...