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Eagle Syndrome - Online Support Group

Fear of starting my new job

In December I had a horrible toothache with severe neck pain, I was clenching extremely hard where I can hear crackling noises in my jaw. I was so scared that I walked away from my job, I ended up at home in bed in shock. I was scared of my own body this was horrible because I worked so hard to get where I’m at. My body just couldn’t move well my neck was effecting my body and my mouth felt like it was collapsing. Suddenly I was clenching every night and my right side of my jaw kept hurting. My toothache hurt and I begged for relief so I got a root canal. Guess what? The pain and fear was still there, my mind was completely hopeless. I was having a hard time swallowing and I just started an amazing relationship with my wife. This was my worst nightmare because I did not know what was going on. February was around the corner and I still had pain constant in my jaw and my upper molar cracked. I lost all my money from the procedures, rent and my car payment. I felt helpless because I honestly thought I was cursed and I was going to die. I spent the last 400 dollars on my upper molar extraction with half down on the crown for my root canal. Man I would go to sleep crying because I was scared of my own body. My mind will race so fast and my heart will follow, then it just got worse because I started getting headaches and nausea. When I went back to the dentist my wisdom tooth was impacted and so my wife took a loan out for a wisdom teeth removal. We prayed so much because we thought it was over, and it was just the beginning. I wanted to go back to work because I miss working and being with my son. My neck started filling stiff as if it was stuck and then it got worse everyday. When I went back to a different dentist I asked him can you please help me. He informed me that I had a broken molar and guess what I had no money so my wife payed for the extraction. I honestly felt like I had relief but my sinuses started to bother me as well as my swallowing. My mind was becoming hectic and I felt like I couldn’t swallow. I would cry because I wanted help and the correct diagnosis having dental phobia and the dentist making it worse was causing my stress. The next couple months I would just be in bed meditating, praying and researching symptoms. I seen so many doctors and specialist some would say it’s in my head and my blood work was healthy. The ENT doctor noticed that my nose was deviated and so I thought a septoplasty would help. It actually helped me breathe better but I still had the stuffy nose breathing. On May 31 I had a panic attack where I felt like I was fainting. I honestly thought it was a sinus infection but my family told me it’s just anxiety. My wife drove me to the emergency and I hated going because they wouldn’t help. I felt like I was searching for nothing and they would send me home saying you’re okay it’s anxiety. My mind felt like it was not connected with my body I felt as if I wasn’t here. I changed the way I eat and started more research. I went the holistic side and saw if I can see tmj specialist he performed so many test and reviewed all my physical problems. When he examined my pain symptoms and problems without me informing him i started to break a little tear. He told me it’s eagles syndrome, and wants to help me get my bite stronger and improve my health. I told him I did a Lyme disease test to eliminate all the causes in my list. He suggested surgery or non surgerical treatment while he’s working together with my orthodontist. Once I got home I felt relieved but scared my anxiety is out of control and so are my stress levels. I’m scare that eagles syndrome will kill me from all the symptoms I’ve been feeling. The vertigo, panic attacks, heart palpitations (ekg came out good) blood pressure is a little high, off balance problems, eye pressure, back pain, tension headache, cervical stenosis, creputus in jaw and neck. Well my question is that can you die from eagles syndrome? I’m really afraid because I miss being myself I want to be alive and not suffer anymore.

I felt like crying reading this. Your story is so similar to so many people including myself. What the doctors don’t seem to realize is just how debilitating this can be. I have suffered through many wrong diagnosis- every time I see a dr I walk away feeling hopeless and invalidated. They actually had me believing at one point that it really was all in my head. They went as far as to medicate me with what I found to be dangerous medication (I thankfully stopped before becoming dependent.) I have been told I have maxillary sinus cysts and it’s causing everything. They offered surgery for this but I declined because I wasn’t even having sinus symptoms (stuffy nose was completely non existent) they’ve told me it’s my TMJ more times than I can count, I don’t even have a TMJ joint (had a surgery years ago that removed them.) all through this… my symptoms have progressed. I have a young son, and I have not been able to be there for him as much as I should because I’m so bogged down by pain and discomfort. Finally, after countless imaging, an orthodontist noticed the strange bones coming out of the sides of my skull. They’re so obvious now that I see them and I don’t understand how so many doctors could miss it. I was so thankful to this orthodontist I sent him a gift basket! He changed my life by giving me that seemingly unattainable thing I have been searching for for years… a diagnosis.
I’m so glad you finally got yours as well. From this point on your pain is validated… no one can tell you it’s in your mind and to go home and take a bath or a walk or something equally ridiculous. It’s all up from this point, now that you know what’s happening. Hang in there my friend, we are all on this journey with you.

This site is an amazing resource. More people with more experience with chime in I’m sure.

Jenn*

Hi Supersayianrulis!

Welcome to this amazing forum! I am so sorry to read about all you’ve been through!!

Ok, so first off, do you know if you have elongated styloid process(es), calcified stylohyoid ligaments or both? These are the things that cause Eagle Syndrome symptoms & are what defines ES. The best way to get diagnosed is to have a CT scan of the area between the base of your skull & your hyoid bone (in your neck). An ENT doctor is the one to see to get this done although your primary care doctor can also refer you. The only cure for ES is surgery.

You happen to live in a state where one of the most experienced Eagle Syndrome doctors on our Doctors’ List works. His name is Dr. Milligan & here is his contact information: Dr John Milligan, Arizona Otolaryngology Consultants, Phoenix 602- 264 -4834, [http://www.aocphysicians.com] Before you spend any more time trying to figure out your next step, you should contact his office for an appointment. He is very busy & books out several months.

The vagus nerve is one of your twelve cranial nerves. It often gets irritated by ES. When it is irritated, it can cause many of the symptoms you listed as having - Panic attacks (it affects anxiety levels), heart palpitations, blood pressure (high or low). It can also cause stomach problems, voice problems, throat pain, eye pain & other big problems. The trigeminal nerve which has three branches in your face can cause tooth pain, jaw pain, eye pain, migraines, nose/sinus pain & other things. The accessory nerve could be affecting your back if it’s upper back. It more often causes shoulder pain & arm numbness though. You can google the cranial nerves & look at the function of each one. You may have other irritated cranial nerves but these are ones that seem most obvious to me when I look at your symptoms list.

You can also have vascular compression i.e. the elongated styloids or calcified stylohyoid ligaments can compress the jugular veins &/or internal carotid arteries. This usually only happens when your head is in certain positions but the results can be vertigo, migraine level headaches, intracranial hypertension, balance problems, etc.

A person can die from ES but this is EXTREMELY RARE. The usual cause is a stroke from the elongated styloid/calcified ligament wearing through one of the veins or arteries mentioned above & causing a stroke. Having the styloids & stylohyoid ligaments removed will give you your life back. Your symptoms will most likely go away. Recovery from surgery does take from several months to a year as nerves heal slowly. You will most likely be able to go back to work about 2 weeks after surgery.

I hope this information is helpful! :slightly_smiling_face:

Good evening

Thank you so much I love the support and I requested an appointment. I heard Dr. samji is also another excellent doctor. I live in Arizona and my wife and I are planning out the schedule so I can get relief and go on with our lives. Panic attacks and the fear of death have shut my body down. I start my new job tomorrow and I’m nervous about everything so I just breathe. Many people suggest dr samji but I heard dr Milligan is another good surgeon. Thank you so much for you’re support seriously for the first time in my life I fit in with people. I knew I was rare and I felt alone with all my symptoms and fear. I love all of you guys because pain really marks you for the rest of your life. Thank you so much I’m sooooo grateful.

The only cure for ES is surgery… personally I wouldn’t spend any more money on dentistry, it’s not going to help the majority of your symptoms! The styloids can affect the Trigeminal nerve too, which can cause pain in your teeth & jaw- I’ve had that & it was the symptom which sent me on the road to getting diagnosed- I was lucky & only had a filling redone because of the pain; some members have had several teeth removed, & still had pain.
It does sound like you could have vascular ES, as Isaiah says a CT will show a bit more detail about the styloids & if the ligaments are calcified; a CT with contrast would also show if there is any compression of blood vessels, although not all doctors are worried about seeing that. There has been a discussion about what Dr Samji likes to see for a referral, if you search the discussions for CT protocol it should come up with that info if you are considering seeing him.
Good luck with your journey, & glad that you have such good support from your wife!

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You would be in good hands with either doctor. If you see Dr. Milligan & want a second opinion, Dr. Samji does phone consults (there is a charge for this). You can contact Dr. Samji’s office by emailing his medical assistant Lauren - lauren@caminotent.com.

Dr. Samji did both of my surgeries - one in 2014 & the other in 2015. I have had basically no problem with ES since then.

I made it through the first day of work, I feel like my face is being sucked by my neck and I can’t find the release point. The first couple hours I was fearing death I know that my neck and my jaw is not correct. The creputis of my joints clicking and feeling off balance makes me wondering. I pray every minute and hope I get by my first 30 days of work. My stress levels are normal and my heart rate is normal. I’m just scared of the bone compressing my artery and dying without full filling my dreams with my wife and son. Life has not been fair and I’m ready to fly. I made an appointment with dr Milligan on October 21st and I’m sending a package to dr samji on Thursday so he can see me sooner. I feel like god is seriously punishing me this month because of everything. I’m seriously scared of turning my neck and even talking. Dr samji goes on vacation on September 11th through the 30th. He comes back on October 3rd my birthday is on October 28th and I want to be happy that day. I refuse to suffer I know god will help me.

Glad that you have been able to start your new job…Will be praying that you get an appointment soon. Are you able to get a CT done?

Yes I have two head and neck ct scan, I’m just nervous because I don’t want to break down at work. I have one appointment set up already on the 21st of October and I’m sending a package to dr samji to see if he can schedule me before he leaves out of town. Thank you! I’m so grateful.

This sounds just like my story. Waiting for my CT results. My life has been on hold for 11 months. Every Dr you ask about this shakes their head and says that’s rare. No wonder it’s so rare!! Good luck I think you are half way there if you have a diagnosis x

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Caz1,

I’m sorry you’ve been searching for an answer for so long. I hope you get your results soon & they have evidence that provides you with a clear diagnosis.

:hugs:

Supersayianrulis -

GOOD FOR YOU! You’re being very proactive. That is awesome!! You won’t die from this. Having your body not work like it should can be very unnerving especially when it goes on for quite awhile. Surgery to remove your styloid(s) should make a HUGE difference for you. Try as much as you can to focus on your new job & not your symptoms even if they’re very distracting.

God is not punishing you. He often uses health problems to enable us to draw closer to Him. Look at how you’ve already been helped by finding this forum & now knowing of good & competent doctors who can help you. Lean hard on Him & trust that He has good in your future. These verses from the Bible have helped me a lot: Philippians 4:6-7 - “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” God wants you to trust Him not feel condemned by Him. He loves us (John 3:16-18).

I’m glad you have an appointment already scheduled. I will pray you’ll be able to see Dr. Samji before he heads off for vacation. I assume you’re trying to get a phone appointment w/ him so you don’t have to pay airfare to CA & back at this time.

Take some deep breaths to help you relax & here’s a cyber hug to help you know you are not alone. :hugs:

Amen to that! Pain tries to snatch a chunk of time out of your life that you feel you cannot get back, but I try to think of the days after active ES when I may not be the me I was long ago, but will be a stronger me who made it to the other end of this whole mess.

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My dentist suggested a treatment plan for eagles syndrome/ he said splint therapy with braces and dental implants. Ummm!??? Sounds like more nerve damage to me. This dentist diagnosed me with Ernest eagles syndrome and said surgery will help but ortho surgeon doesn’t know if eagles syndrome I rather go to a good surgeon. My situation is so complex because my jaw misaligned and also have es. Does anyone know anyone I can talk to who had misaligned jaw with eagles syndrome? I’m still going to see dr samji and second opinion on dr Milligan I’m going to be okay

I do not have misaligned jaw. Do have bite changes so often I end up at dentist every few months to do the bite test and adjust the bite or to fill a broken tooth…so frustrating!

W have had others who’ve possibly had Ernest Syndrome; it’s where there’s a weak ligament rather than styloid processes causing pain, & Ermest Syndrome symptoms are similar to TMJD, so I can see that your dentist might want to get your jaw & teeth realigned, but if you have elongated styloids, plus it sounds as if you have vascular symptoms, so it seems reasonable to get the styloids out first, then see what symptoms you’re left with.

I got the green light for styloidectomy! I’m sending dr samji the package today one day shipping so he can review it before he leaves on vacation. Then I can get an evaluation on the phone and surgery date. Day 3 of 30 so far so good I’m just scared of the vascular symptoms…

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To be honest with you the last time I felt those symptoms where in April and May. After my septoplasty I haven’t had them just the chronic vertigo, stress, crackling on neck on back of the head an jaw. I’m pretty sure it’s the styloid process causing it

Hi I am so sorry you are going through all this.
I have much of the same things you are experiencing. My dentist got me mouth guard to help the clenching grinding. It has helped me alot I still once in while will get cracked or chip tooth. I also have found a chiropractor and massage therapy that has help me alot. As for the anxiety I have severe I have gotten relief from anxiety meds the Dr has prescribed to me.
I have also tried CBD oils that has helped as well.
Everyone is different it all up to you on how you feel if you ready and want the surgery. I do feel for me all these things I do is temporary. I am able to function and live ok right now but I do know for me it will end with me getting the surgery. I am trying to find a Dr in my state that will perform the surgery!

Hi Supersayianrulis,

HOORAY for green lights! So glad you’ve gotten approved for surgery!!

You are indeed wise to doubt your dentist’s suggestion. Braces & a splint are a good post op plan but won’t help w/ ES. I recall that there was forum member who’s bite was pushed out of alignment by ES so waiting until you’re healed from surgery to see how your jaw sits & then getting braces would be a good idea. Jules gave you good information about Ernest Syndrome. It is different than Eagle Syndrome but can have some similar symptoms.

Hopefully you’ll be able to have surgery soon!