You say sore neck on the left side. Mine too! Like if I had an adams apple...to the left of that...if I press in its SO tender. Is that where everyones hurts?
I have excruciating ear pain cheek bone painā¦even gum painā¦sum seems like nerve pain with lightning bolts to the right side of my face and also have two very tender spots on my jaw linesā¦vertigo and flashing lightsā¦Maxillofacial said I have an elongated calcified styloid process but Nuero calling it atypical facial pain:((
I just want answers n to be out if pain!!!
Lisa- I get that bad pain in that same spot in my neck too- I can't even wear a necklace any more, the tiniest pressure in that area can really set it off! It sounds like nerve pain/ neuralgia you're getting in your face and jaw- I've had that too, and have just been prescribed amitryptiline- Heidi suggested that works for nerve pain and my GP agreed. Been on it for 2 weeks now on a low dose and it's really helped- actually getting some sleep, first time in I don't know how long!! Did the Neuro not suggest it?
Jules
The first ent I was seeing insisted my symptoms (sensation of something in my throat on left side, dizziness, neck pain, sinus pain) were caused ny acid reflux. Well I have two kids and believe me I know all too well what acid reflux feels like and this is not it. I kept on pushing until he did a ct scan. He still insisted he didnāt see anything there except calcification near my thyroid on the left side. Well I started researching bc at that point I felt like I was going to loose it. Came across eagles syndrome. Found me another dr that knew something about it. Picked up my ct records and got my diagnosis just a week ago. Getting ready to schedule my surgery so I can get on with my life. Itās sad how much money we all have to spend just to get a proper diagnosis! !!
I called around to drs that I found on google that were even 200 miles away bc I wasnāt sure who could treat it. Google drs that have experience im eagles syndrome or call local hospitals and ask if they know of an ent that has experience with eagles. Thatās how I found my dr now
Im on carbamezapene, baclofen, effoxor, Thiamine, vitamin D, Norco,Ativan and annaproxā¦I really Just Want some answers Iām miserable n ready to give up! Maxillofacial said possible TNā¦but also my Panarama of my jaw showed(there wording) āan elongation and calcification of the stylhoid processāā¦does that automatically mean Eagles??? Help please!
Lisa, I am in this process myself and was just diagnosed two weeks ago that I have a elongated styloid on my right side. It feels like something is stuck in my throat. I was diagnosed with TN seven years ago. I don't have the usual symptoms except burning sensation on my head, neck face ears both sides. It sounds like TN symptoms. My doctors are concerned about this surgery for me b/c they say it could make it better or worse as all these nerves are in close proximity. I will let you know what I find out. I am seeing a ENT and Neurologist but neither can really advise anything so far.
Lisa said:
I have excruciating ear pain cheek bone pain...even gum pain....sum seems like nerve pain with lightning bolts to the right side of my face and also have two very tender spots on my jaw lines....vertigo and flashing lights....Maxillofacial said I have an elongated calcified styloid process but Nuero calling it atypical facial pain:((
I just want answers n to be out if pain!!!
I have both Ernest and Eagle syndrome. The trigeminal neuralgia was EXCRUCIATING!! I have been taking Tegretol for 4 weeks now and there has been an AMAZING difference! I still have the feeling that something is stuck in my throat, but now that I don't have constant stabbing pains in head and face, it's A LOT easier to deal with! Good luck to you.
I too have been diagnosed with TN. I have the same sensation that something is stuck in my throat. I can actually feel it. Has you doctor mentioned anything to you regarding having the surgery? I ask this because my doctors are unsure what my outcome could be-meaning making it better or worse. I do present with different TN symptoms burning sensation in my head, face, ears, and neck both sides.
wadams said:
I have both Ernest and Eagle syndrome. The trigeminal neuralgia was EXCRUCIATING!! I have been taking Tegretol for 4 weeks now and there has been an AMAZING difference! I still have the feeling that something is stuck in my throat, but now that I don't have constant stabbing pains in head and face, it's A LOT easier to deal with! Good luck to you.
So Does Elongation and Calcification mean an automatic diagnoses?
What is the difference between Ernest and Eagle syndrome?
Eagle involves the styloid process and/or stylohyoid ligament. Ernest involves the stylomandibular ligament at it's insertion at the mandible.While there are MANY overlapping symptoms there are also some that are very specific to each syndrome. Remember also that so many symptoms are listed for Eagle, as there are two distinct types. To answer Lisa's question, you can have elongation and/or calcification and no symptoms and I don't think most doctor's will make a diagnosis if the patient is not symptomatic. Heck, there are so many people on this site with textbook Eagle and STILL doctor's won't make the diagnosis.
Re: TranquiliTea's question: Ernest Syndrome involves the stylomandibular ligament whereas Eagle Syndrome involves the stylohyoid ligament. In Ernest Syndrome, the S-M ligament is inflamed; in Eagle Syndrome the S-H ligament is actually calcified & becomes an extension of the styloid process.
Re: Lisa's question: If the the calcification is that of the stylohyoid ligament (which translates to elongation of the styloid process) then yes, it's automatically Eagle Syndrome.
:)
Isaiah 40:31
Lisa said:
So Does Elongation and Calcification mean an automatic diagnoses?
I also feel that MANY of the people on this site also suffer from barre-lieou syndrome, maybe even in addition to eagle or ernest. One caution when researching on the internet -- there are several sites with MISINFORMATION. These all have in common the same doctor and the fact that they are all pushing the service of prolotherapy.
This discussion has been great... While the ENT did not think it is Eagles, he did note he is familiar with Eagles. I questioned him a bit and he did scope my throat. My symptoms are less pronounced some days compared to others, but usually better in the mornings compared to later in the day. Sleeping flat on the bed without a pillow seems to help a bit... Which is the opposite of what the ENT said to assist with acid reflux. I am going to give it another month +/- depending on the symptoms and then push the issue more with probably another ENT. Going to check the list for one in Dallas or within a couple hundred miles...
Thanks again for all the great input. I tend to lean towards Ernest or Barr-lieou, but I'm no doc. Very similar symptoms though.
Are these things, ES, Ern or BL, diseases that are fatal if not 'taken care' of? I mean, do we HAVE To have them removed?
With the exception of the carotid type of ES, none are fatal, but in most cases, the pain and other symptoms become so bad you will WANT them removed!!
wadams said:
With the exception of the carotid type of ES, none are fatal, but in most cases, the pain and other symptoms become so bad you will WANT them removed!!
Can you tell me who can diagnose with those syndromes?
I actually made an appointment with famous prolotherapist for consultation, but Iām curious how he can diagnose me without any specific testā¦
Chizuru,
I donāt 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. Itās almost as if physicans are scared of it.
Wadams- you could be right, as I think certainly in the UK they're scared to operate! It could well be the same for a lot of surgeons in the US too. And, being proud consultants, they're not likely to admit that they don't want to operate, and ask for help from someone more expert! It's easier to dismiss the diagnosis, especially as I think many are not aware of research. As the consultant I saw said (it was the registrar who noticed the styloids, not him!)- 'this so-called Eagles Syndrome'!!