I have learned so much through these discussions. Thanks to all who participate! I've had a couple of OMG moments as I read other people have these too! I incorrectly thought the hyoid bone faced with the open end to the front, but last night I did hours more research and see that it is the other way. This makes a lot more sense with my pain.
Has anyone had the same type of experience as me? Sorry about the length...
I first had a CT scan because I complained of this weird pain under my jaw that about dropped me to the floor. It feels like a chicken bone jabbing but hurts so bad that I can't breathe or swallow until it stops. It happens mostly when I turn my head and yawn or swallow at the same time. I also had continuous swollen glands. (this happening for at least 3 years) The CT scan showed swollen glands so I was referred for a swallow test because I also complained about trouble swallowing. The radiologist at that scan reviewed my previous scan because he saw something during the swallow test. That is how I was diagnosed with Eagles Syndrome. So then I was referred to my ENT. He looked at the scans and said he was more worried about a spot he saw elsewhere so ordered an MRI. He did show me the elongatedtemporal styloid process on my scans and even showed me how long it was. I had the MRI...that ended up being fine. I didn't return to the ENT until about a month ago. He showed me the scans again and explained about Eagles and informed me that he never did this type of surgery and only saw one case many years ago. He wanted to show my scans to another ENT. He ordered a hearing test because I also complained about weird popping in my ears and that fullness other people talk about and sometimes I can hear my blood pumping inside my head. (this is where most doctors start looking at me like I am nuts and send me on my way) The hearing test was within normal ranges. The ENT he met with did not see anything at all on my scans and would not do surgery. He said that he could refer me to another ENT. I just sat there and stared at him...wanted to ask what that thing was then that he showed me on my scan...etc. but I just sat there. He said I have calcified tonsils and that is the pain I feel in my throat. I told him it wasn't in my throat and he just stared at me. He did not tell me what to do about the calcified tonsils so I looked it up when I got home.
So where do I go now? Last night research brought me to dislocated hyoid bone, hyoid syndrome, etc which brings me back to Eagles. I have other pain all the time that runs down the back of my neck into my shoulder, down my arm, to my hands, down my leg. I have always contributed this to neck issues I've had for over 15 years or arthritis, tendinitis, and/or bursitis. Now I see that maybe this is another symptom of Eagles.
One thing to mention...when I was around 8 years old a neighborhood playmate tried to hang me from my swing set. Thankfully my mom was watching us and came out and got me down or I would not be here now. I am wondering if that caused an injury to this area. I also dove into the lake in too shallow water and hurt my neck. This is probably what is causing a bone spur and degenerative disks and bulging disks in my neck.
Thanks for hearing me out! Any other people with similar experiences?
I saw dozens of doctors and specialists about my symptoms until one ENT actually listened long enough to confirm Eagle Syndrome. Even though he is isn't convinced that all my symptoms are caused by ES, he is humble enough to admit that the syndrome can present in weird ways. I'm waiting on a surgery date right now. Don't let the ones who don't listen make you feel dumb. You probably know more about ES than many of them! I hope you can find a doctor who know about ES. Keep at it.
Thanks eAmator. I'm just happy to know that is it something, other people have the same thing, and it has a name. For a few years there I began to wonder about myself. One doctor said I grind my teeth at night so had me wear a mouth guard. That was very painful and I tossed it after just a few nights.
You are on the crazy journey we have all taken; so frustrating! I see you are in Wisconsin, I am in the Chicago suburbs. I traveled to Wexner Hospital in Colombus Ohio to see Dr. Arick Forrest who ended up doing my surgery.
If you search for Emma’s posts you will find a spreadsheet she has been keeping with surgeons names and contact info. Emma is a godsend to all of us on this site.
Feel free to send a friend request if you want more info.
Incompetent doctors are worse then incompetent people in any other position (possibly a tie with lawyers). I messed around with countless doctors that examined my insurance thoroughly. I ended flying from Michigan to Philly to Dr. Cognetti at Jefferson Hospital. Worth every penny. I fear wasting time worsened the nerve damage that is my only lingering symptom. The styloid removal answered 90% of my medical complaints. I too had pain all the way down my right side and throughout my skull. The last 10% I’m hoping will go in time. Good luck. Don’t put up with them.
Incompetent doctors are worse then incompetent people of any other profession (possibly a tie with Lawyers). I wasted too much time with doctors that examined my insurance throughly. I ended up flying from Michigan to Philly to see Dr. Cognetti at Jefferson Hospital. Worth every penny. 90% of my pain is gone. I also had pain all the way down the right side of my body and inside my skull from a right side elongated styloid. The last %10 is nerve damage I am hoping will go away with time. I had the surgery in May. Don't put up with them. I worry the nerve damage got worse while I was cowing to them. Find somebody you like that treats you well AND KNOWS WHAT THEY ARE DOING!
Hi Marie, this group is amazing. I just joined recently and it’s already helped me find my closest ent surgeon in a neighboring state. Drs can be more frustrating than ES itself! You are definitely not alone. Check Emma’s list. I have encountered many Drs that have no clue. Everyone here has. You aren’t crazy, you just need the right Dr that will listen, do the right tests, & possibly surgery. You need a professional that’s very familiar with the surgery and has done them. My local ENT was ready to dive in this month without having done the surgery in decades and wanted to “break out as much bone as he could get to” - no thank you, I want someone that’s very familiar with this and am willing to travel for it. You are in charge of your health - research all you can - ask tons of questions - you really probably do know more about it already than most Drs. I made my first ever ER visit a few weeks ago due to heart arrhythmias and not a single Dr nor nurse there had heard of ES nor was willing to check into my carotid artery which I was worried wad compressed and was causing it. It was extremely scary and frustrating but I feel better already knowing I’m headed to an appropriate ES Ent soon. (Hugs!)
Maria, I had both.... After both sides were fixed with styloid I haven't had that issue again... But now with my hyoid... I had that surgery also and was told that it's calcified AGAIN.... What's hyoid syndrome?
Hyoid syndrome is described as " tenosynovitis of the intermediate tendon of the digastric muscle". Go online and look up tenosynovitis and then digastric muscle for more info. The pain is under my jaw behind the glands and feels like my throat is being crushed and bones are being mangled. The digastric muscle elevates the hyoid bone. Tenosynovitis is inflammation of a tendon. Ironically, 3 years or so ago I first asked my dentist about this pain and he thought maybe it was a muscle snapping. How close he was to the truth.
Does the pain down your side feel like nerve pain?
linnaea said:
Incompetent doctors are worse then incompetent people of any other profession (possibly a tie with Lawyers). I wasted too much time with doctors that examined my insurance throughly. I ended up flying from Michigan to Philly to see Dr. Cognetti at Jefferson Hospital. Worth every penny. 90% of my pain is gone. I also had pain all the way down the right side of my body and inside my skull from a right side elongated styloid. The last %10 is nerve damage I am hoping will go away with time. I had the surgery in May. Don't put up with them. I worry the nerve damage got worse while I was cowing to them. Find somebody you like that treats you well AND KNOWS WHAT THEY ARE DOING!
Does the pain fell like nerve pain… Well, the brain stem in our neck is a big fat nerve and the branches coming off that are slightly smaller big fat nerves so my styloid got so long that it was irritating one or more of those branches. To be truthful, I feel like that styloid irritated all the nerves, and my brain stem, on the right side. I’m not exactly clear as to how that irritation damages the nerves. Rubbed raw? Over stimulated with pain? Deadening of nerve sensation leading to disfunction that causes other nerve problems? All of the above? I do know that the problem starts with other parts of our bodies by problems with the big fat nerves that connect them all back to the brain stem. If that actually causes other problems with our body or just the illusion of problems because of relay problems I don’t know, but it is serious stuff.
Wow!... Isn't it quite ironic that we can talk to our dentist and not ENT? The Dr.'s keep saying its stress etc..
Does your neck feel like the muscles on both sides are being pulled etc??? How do you get diagnosed with tenosynovitis? Marie said:
Hyoid syndrome is described as " tenosynovitis of the intermediate tendon of the digastric muscle". Go online and look up tenosynovitis and then digastric muscle for more info. The pain is under my jaw behind the glands and feels like my throat is being crushed and bones are being mangled. The digastric muscle elevates the hyoid bone. Tenosynovitis is inflammation of a tendon. Ironically, 3 years or so ago I first asked my dentist about this pain and he thought maybe it was a muscle snapping. How close he was to the truth.
I do feel like "something" is being pulled down the side of my neck. Mostly on the left side. I can feel that from the back of my eye, down behind my ear, under my chin, and all the way down my neck, shoulder, and arm. Sometimes down my leg too. It feels very sore if I press on it. (whatever "what" is...tendon, muscle, nerve) I probably have other neck issues though too. I don't know how to get diagnosed with tensoynovitis. Have you ever had tennis elbow or tendonitis anywhere else? Would be same kind of pain I guess. ang said:
Wow!... Isn't it quite ironic that we can talk to our dentist and not ENT? The Dr.'s keep saying its stress etc..
Does your neck feel like the muscles on both sides are being pulled etc??? How do you get diagnosed with tenosynovitis? Marie said:
Hyoid syndrome is described as " tenosynovitis of the intermediate tendon of the digastric muscle". Go online and look up tenosynovitis and then digastric muscle for more info. The pain is under my jaw behind the glands and feels like my throat is being crushed and bones are being mangled. The digastric muscle elevates the hyoid bone. Tenosynovitis is inflammation of a tendon. Ironically, 3 years or so ago I first asked my dentist about this pain and he thought maybe it was a muscle snapping. How close he was to the truth.