Frustrated in pain and new to this site

I am new to this website and looking for info and comfort and help! I wanted to know if anyone has horrible pounding headaches from the back of the head and in front

First off Hang in there mate! secondly I do occasionally have that headache in the Back of the head. And it depends on which side. Some times my left sometimes my right. But i do notice that the headaches typically match the neck pain and even matches the corresponding side.

I dont get the headaches as such, but do get really painful muscles/tension around the back of the head and down onto my shoulder on that side.

so dont have any kind of neck pain? pinching or throbbing or the otherwise?

I get constant headaches that are not in the same spot. They are everywhere.

I dont know if that is directly related to ES ??

Before ES surgery, my migraines with auras were pretty bad. I was diagnosed with occipital neuralgia 3 years ago. My steroid shots was given at base of skulls both sides. Since having surgery, I haven’t had excrutiating headaches like before. I had surgery on 11/25/13 and back of my head, jaw, neck, and shoulder are not flared up. Eagle’s syndrome has so many different symptoms and sometimes hard to get a confirm diagnosis. Don’t give up, many of us were told that we didnt have ES or it was just too rare to have.

In this family you'll b able 2 find out all kinds of different pains n aches that we haf, it makes us special. WELCOME TO OUR EAGLE FAMILY!!! Glad u joined us, every time u post a question or statement, let me tell u we r so nosey that u'll haf a reply at no time.

Haf u've been diagnosed with Eagle S.? N, do u haf any other conditions that could increase the amount of pain?

I haf those type of headaches, but I've been diagnosed with Chronic Migraine not related to E.S. I've been prescribed with night mouth guards n now I'm heading to an orthodontist for invisalign, this is way better then purchasing a night mouth guard at any pharmacy, those r too big n most of the time won't fit in your mouth.

Let us know about your condition n treatment, I bet someone from our family can identify with u on specific pains or aches, I can tell u about my headaches from back neck area n my left ear.

Once again, welcome "mom4".


I’m new and a mother of 4 as well! I do have headaches like that.

YES! and yes...

I have been going to my ENT, reg Doc, Ortho for the last 10 years complaining of stabbing pain in back of my skull...

along with ear-ache, neck ache, etc. etc...

My Ortho suspected Eagles when he did the exam for tmj...he sent a letter to my ENT 3 years ago who just ignored it...I told this Ear specialist that it felt like a KNIFE in my head..he laughed and said, "I am sure you know what a knife would feel like?" He said, "Oh, I don't do may want to try massage, chiro, PT," after 3 sets of ear tubes, bleeding ears and now a NEW ENT, I have been confirmed that Eagles is for sure. I am researching where to go for surgery, as I ponder writing a letter to ALL the PAST doctors and health care professionals?? who treated me like I was whacko!!! I hate to cry over spilt milk, but so many years of suffering...feel i missed so much...but on to the POSITIVE...for you, I recommend demanding a CT scan so you can SEE and learn for yourself what is going on...ASK a lot of questions to everyone...don't give up- you know your own body and if you have horrible headaches, SOMETHING is going on!!!

When going for another bite guard due to TMJ, my Eagle Syndrome was diagnosed by the new TMJ specialist I went to. He did a panoramic x-ray and spotted it right away. He told me what it was and I took it from there. I wasn't able to locate a doctor in my state that would do the surgery.

I used to have a lot of migraines, stabbing ear pain, buzzing in the ear, and tight neck and shoulder pain before getting my styloids out. Also, I had an ENT who just wanted to treat the symptoms. I couldn't stand it anymore so I googled and found a good Doctor in Canandaigua, New York, Dr. Bradley Simmons. I called him up and sent my records to him. I traveled there and had the surgery just two weeks ago. I believe since he is in my insurance network but not my state he should be covered. I can tell you it doesn't matter. Anything I have to pay was well worth it.! I felt immediate relief. Most problems were gone within the first week. I'm also discovering things I didn't know were not working or not being felt, are now coming back around and working, for example salivary ducts in my cheeks. LOL. I will never wait around for a doctor to decide when I should have something done or what I should live with. They don't know the pain we are in.

Jimmie sue so the styloid is removal helped out after all ?.

Yes, removal helped immediately. I could already turn my head more freely when I woke and looked to the side of the bed at my visitors. Within the first week I think most of my symptoms were gone. I think it was one of the best things I ever did for myself.

mt83 said:

Jimmie sue so the styloid is removal helped out after all ?.

did they take them bout out at the same time? do they go through the throat or the neck ?

Welcome! As Ronnie wrote, this is the site for discussing pain... I am a lucky one who had surgery which has relieved relatively all of my symptoms. But before surgery I had constant headaches at the base of my skull, primarily, which travelled forward to my eyes at times. I also had other odd ES related pains in my neck referred pain in lots of other places as well. I am absolutely certain my surgery relieved it because I had intra oral on each side individually. When I woke after the right, the headache was gone from the right but continued on the left. After I had the left surgery then it was gone. My experience was much like what Kimmiesue reported.

That being said, my minor continuing pains include tendonitis in my neck, TMJ-ish issues and other pain symptoms which come and go. I am mostly concerned about the tendonitis, at this point, because there is severe calcification which does seem to be getting worse as I age... Or maybe my tolerance is going down instead. :) I had been symptomatic for about 20 years before I got a correct diagnosis of ES and had my surgeries in 2009 and 2010. I must say that since then I am becoming a tad spoiled about being relatively pain free.

So hang in there Mom4 because there is hope... And as awareness rises more options will hopefully become available.

Thank you so much for the response and hope! Its frustrating when doctors in the Midwest know nothing of it.I’m ready to travel to the east coast soon

They removed one in November 2009 (it was my birthday present to myself LOL) and then had me wait until February 2010 for the left side. Mine was a throat approach. Dr. Burry in Clarkston Idaho was the ENT that performed it and he felt that in my case, the limited visual field through the throat was safer than going through my neck... The danger of arterial issues was very real because of how mine had grown. The tip of one was actually poking through the skin at the back of my throat like a tiny little dagger and he was amazed that I had gone so long undiagnosed because the styloids showed up on a simple panoramic x ray from my other orthoscopic surgery on the hinge of my jaw the year before from a TMJ specialist... Just goes to show how little awareness there is even from a specialist like that... Dr. Burry had the CT scan done which confirmed exactly where and how to proceed.

And I feel your frustration, Mom4, because I live in Indiana and cannot find an ENT which is familiar with ES so I can have follow up testing done. My main concern that they start doing the growth thing again... Dr. Burry used a bone crusher but could not say for sure if he got the styloids all the way back. My understanding is that they can start re-calcification and basically start creeping back to a degree. My hope is that eventually a new batch of ENTs will become midwestern and I can get my follow ups to assuage my worry.

mt83 said:

did they take them bout out at the same time? do they go through the throat or the neck ?

There’s a doctor at the Cleveland Clinic, Dr Cognetti, that has gotten rave reviews on this site. I had my surgery done in Columbus by Dr. Arick Forrest. Those are two good resources for those of us in the Midwest. You might consider seeing one of them for a consult. Hang in there!

Dr Cognetti is in philadelphia

Dr Cognetti is at Thomas Jefferson Hospital, Philadelphia, PA.