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Eagle Syndrome - Online Support Group

First Timer Questions

Hello,

I’ve been reading a lot about Eagles Syndrome since my Oral Surgeon pointed out that my styloids we’re showing up on my pano x-rays which may be ES. My chronic pain and healing journey started 3 years when suddenly my ears felt extremely full w/t pressure after my drive descending down the mountains with a severe head cold. Needless to say my ears especially my left was never the same. My ears continued to have trouble equalizing to barometric pressure and felt full, popping, with occasional tinnitus. It was getting worse over time and I saw many Dr.’s to find a solution. So, after seeing 7 General Dr.’s, 3 ENT’s, 2 General Dentist, 2 Oral Surgeon’s, 1 TMJ Specialist, 2 Allergists, 1 Acupuncturist, 2 Chiropractors, Cranial Sacral Therapy, Hypnotherapy, Cryotherapy, and plenty of supps and anti-inflammatory dieting I still could not find relief or a Dr. that knew what was wrong with me. You may think it’s crazy that I’ve done all this for an ear problem but let me tell you it’s really uncomfortable, painful, and I also get severe pressure in my head! My quality of life is WAY down!!! Last October I started getting very achy in the jaws and popping in the joint behind my ear. I could swear it felt like TMJ but I went to the very best TMJ specialist in my city and he ruled it out. “What”! So, then I’m thinking maybe it’s my bite, perhaps it’s changed since I got my braces off 8 years ago. So, I go back to my Orthodontist and she said “nope, your bite is fine but your two top wisdom teeth are erupting”. So, I was thinking “Eureka, that must be it”! So, I go to a Oral Surgeon and tell him my story. He’s skeptical that my wisdom teeth would be causing all my pain but I’m eager for a solution so I had him take them out. Before he did though he pointed out that on my panoramic x-ray he could see my styloids and said typically your not supposed to so it could mean they are calcified and used the word Eagle Syndrome. He seemed so uneducated about it so, I let that go over my head! At that moment I just wanted my wisdom teeth out.
Well, I’m 2 weeks post op from that surgery and to my great disappointment all my original pain is still there and maybe even worse! On my follow up appointment my Oral Surgeon said I should go see some specialist in the big city of SF. Now, I’m extremely concerned. Could this be ES? I don’t have any of the classic symptoms that I’ve been reading about on the web or on this site. For me, my primary symptoms are ear fullness/ poping, facial pain and jaw popping, and severe head pressure at times. (Btw, I had a MRI of my head and it was good…no findings) I feel like nobody in the medical field wants to help me and/or have answers! My orthodontist gave me a referral to get a fancy and very expensive out of pocket 3D image but my Oral Surgeon says save your money and use it towards the specialist in SF. They should have everything there to help diagnose and will be covered under medical insurance. But I’m eager to know sooner cause seeing a specialist could take mths!
So, CT scan or 3D image, what’s better?

I’ve pretty much hit rock bottom and lost all hope! Has anyone experienced anything like this?

Thank you for your feedback and time!!

Hi Christy,

Welcome to our wonderful forum. So glad you found us!! There is lots of good information in the Newbies’ Guide. Click on the magnifying glass, top left of this page & type in Newbies’ Guide or whatever subject you’re interested in learning more about. Links to related discussions will pop up.

If your oral surgeon felt it noteworthy that he could see your styloid processes on your panoramic x-ray, then there’s a very good chance they’re elongated. Actually, your symptoms - popping jaw, ear fullness/popping & severe head pressure are all classic ES symptoms. Head pressure could be a symptom of a compressed vein or artery in your neck. The styloids or stylohyoid ligaments are capable of causing this problem.

The best diagnostic tool is a CT scan. You want a CT that basically covers the area between the base of your skull & your hyoid bone. Any seasoned ENT should be able to order this for you & even your PCP could as well. Since you live in CA, Dr. Samji should be at least one of the doctors you get an opinion from. If you want a second opinion, there is at least one specialist in SF, but I doubt he’s as experienced as Dr. Samji who’s done more than 300 ES surgeries at this point.

If you want an appointment w/ Dr. Samji, he requires a CT w/o contrast & a radiology report w/ an ES diagnosis, the styloid measurements & a note about whether or not the stylohyoid ligaments are calcified. He won’t accept a CT w/ contrast. A CT w/ contrast does show the soft tissues & could show vascular compression but it’s more difficult to get accurate styloid info in a CT w/ contrast. Most radiology labs will include 3D images along w/ the CT slices. I’ll send you a PM w/ my pics so you can see what I mean.

Hi Christy!!!

Welcome! The lengths we go to when searching for answers about our health! I would have done the same thing with the wisdom teeth. You could not have talked me out of it - if I thought it was going to help…I did it. Handed over cash for accupuncture, TMJ mouthpiece, chiropractor. I did it all. I’m 8 weeks post-op from having my first calcified ligament removed. No more wondering! That did it! I can’t wait to have my second one done soon.

We’ll be here to help you navigate trying to get a diagnosis!

Hello,

Thanks so much for your reply! I appreciate you taking the time and sharing your thoughts and information! It’s so overwhelming and I’m trying to process it all. It seems so rare and I’d drive myself crazy trying to figure out how I got this condition. I guess what’s more important is how I get through it and deal with the cards that life gave me. I’m so grateful for this support group! It’s so nice to hear that I’m not alone and others are experiencing this with me! My family and friends don’t really understand how I’m feeling! They can only offer their sympathy and I dislike when people say it’s just stress, allergies or something along those lines. I never really feel heard… by anyone! It’s very isolating and I find myself withdrawing a lot! I would never in a million years choose to live in pain for more then a thousand consecutive days! I’ve become quite the actress putting on a happy face when actually I’m in extreme discomfort and pain inside!!! No amount of anti-inflammatory medications help much not even high quality potent CBD oil. I do have so many questions so, I will comb through this site and see what more I can learn. Thanks again so much!!!

Hi Christy,

You will find many answers & much support here. If you can’t find an answer to a question you have, post your question & I guarantee you’ll get answers. As far as the cause(s) of ES, no one really knows. It was originally thought to be the result of scar tissue build up after a tonsillectomy (Dr. Eagle’s premise) but was later proven that is not totally accurate. Many people w/ ES have had head/neck injuries or thyroid disease or neck/mouth/throat surgery but many others have not.

As long as you stick w/ us, you will be heard, understood & cared about. No need to put on a happy face. We’re all either looking for diagnosis, trying to find the right surgeon, in post op recovery, or have already been there & done those things. This is your safe place as regards ES.

That means so much to me you have no idea; but wait you do know! :wink:

Btw, I made an appointment today to see Dr. Samji on April 2nd. I’m feel so grateful his office is only a 2hr drive for me. I will get the CT scan you described beforehand. Thanks for the details on that!!! Very helpful :slightly_smiling_face:

That’s an impressive list of doctors you’ve seen! But sadly not that unusual! Like you I had symptoms of jaw & earache for years which I thought were wisdom teeth, but never had the courage to have mine out, luckily! I never had the classic pain swallowing/ lump in throat symptoms either, similar to you mine was jaws, ears, ear pressure etc. You’ll see when you read on here that there are many varied symptoms that articles never mention!
Really pleased that you’ve been able to get an appt. with Dr Samji; hopefully you can get a CT sorted before that. Hope all goes well & you get a diagnosis & answer to your pain…

Hello Jules,

Yes, I’ve certainly been on a mission and determined to get some answers and ultimately some pain relief. But, I’ll admit the last few mths I’ve felt really defeated and more recently felt like I was loosing the fight surrendering all to the good Lord asking for mercy to end my pain and suffering. 2018 was my hardest year yet and I was so ready to make a turn in the right direction for 2019 and I didn’t see that happening as my symptoms are becoming even more pronounced & problematic. I’ve already lost so much to this debilitating chronic condition like my home, my dream job, went into debt and more!! I don’t know what joy feels like outside of being a Mother to two young daughters, my loving supportive husband and my fur baby!!! But, I’ll keep getting back up in the ring, and take many more rounds for them to defeat this relentless pain beast! I’m so grateful to have found this support group!!

Jules,

Have your symptoms gotten better after surgery?
I fear that surgery could make my ear stuffiness/popping/ pressure worse.
It seems like styloids serves a purpose in our body or else we wouldn’t have them. How important are they? Can a person optimally function w/o them?

Good morning, Christy,

That’s FANTASTIC NEWS! So glad you were able to get an appointment soon! A 2 hour drive is truly a short distance when you consider people have flown thousands of miles to see Dr. Samji. You are indeed blessed to be that close.

Let me give you a heads up re: Dr. Samji. Since it sounds like you may have bilateral ES, he will only operate on 1 side at a time & requires at least 3 months healing time between surgeries. This is actually a good strategy & one the more seasoned ES doctors seem to universally require. The reason is that there is a fair amount of swelling in the neck & throat post op. Dr. Samji does his surgeries externally as that allows him to electronically monitor nerves & view vascular tissues in the area while he operates. It also gives him full access to the styloid & s-h ligament which he will remove from skull base to hyoid bone if possible. The neck scars are virtually invisible once healed.

The styloid process is an anchor point for some smaller muscles & ligaments related to the tongue & larynx. Dr. Samji told me that the s-h ligament plays a small role in helping w/ swallowing. It seems that detaching the other muscles & ligaments from the styloid has no real consequence as evidenced by the many people on this forum who’ve had successful ES surgery. I’m sure he will go over that subject with you at your appt if you ask him about it.

There is a greater likelihood that ES surgery will eliminate your ear symptoms than exacerbate them. For some people, all ES symptoms are eliminated by surgery, for others they are minimized so life can be lived fully again. Many of us have ended up w/ a little residual nerve irritation (numbness, localized tenderness, etc) as a reminder of what we went through w/ ES but that doesn’t impact our daily lives to any degree.

Make a list of questions you have for Dr. Samji to take with you & try to focus your session w/ him on those & skip giving him the history of what you’ve been through trying to get a diagnosis. Your appointment will be much more productive that way. I will pray that you feel your time with him is time well spent.

I’m so glad you have good family support. That makes all the difference on this journey!

Isaiah’s given you good advice about Dr Samji’s system…I’ll just answer the question you asked me- I feel so much better after surgery, I have my life back! I was starting to feel really ill with vascular symptoms before surgery, so was really glad to get the 1st side done. I felt loads better quite quickly afterwards, but not completely- the 2nd side can either play up or become more noticeable after one side’s removed- so I had the 2nd done a year later. So glad it’s all done, definitely worth it. And you’ll be in really good hands with Dr Samji! ( & God, obviously, my faith kept me going & stopped me from worrying during the surgery) God Bless

Thank you Isaiah and Jules for the information and encouragement!!
It’s so nice to hear that there may be some hope for pain relief! I’ve come to know pain well and could live with it on some level but not at this level 24/7!

If I’m a candidate for surgery is there a long wait list with Dr.Samji?

I was actually really surprised that when I called yesterday they got me in for a new patient visit on April 2nd.
I’ve had to wait 3mths or more just to get an established patient visit with my ENT’s!!

Also, just wondering do you think ES is a much more common than what statistics report? I mean I’ve had so many Dr.s look at my x-rays and never mention anything about calcified styloids! If I get an ES diagnosis and recovery I fully intend on going back to all my Dr.s and share the good news so they can start screening for this type of thing and people can get proper care and not be misdiagnosed! Nobody should have to live in this kind of pain and I wouldn’t wish it upon anybody!!

Christy,

It is suspected that ES is much more common than statistics state as you suggested. It’s thought there are many people who have it but are asymptomatic, but the percentage of people who have it is low (which seems totally odd to me!).

Good plan on your part to inform your doctors who know nothing about ES. Just a heads up, you may get the same sort of reaction from some of them that SewMomma got last night when she mentioned ES to one of her ex-doctors whom she saw at church. Some will grab the info w/ gusto & others may be disinterested. Take heart - at least you’ve tried to educate them!

Exactly - my primary doc was fascinated and kind of tilted her head and said “Tell me more about this”. Curious and caring. This guy last night was “You’re telling me I missed something in my profession. Go away.” :wink:

But maybe a tiny seed was planted and someone down the line will have the problem and he’ll say “You know I had a patient once with ligaments…”. I’d like to think that would be the case for that future eagle.

I definitely think that ES is way more common than thought, just misdiagnosed…now it’s easier for people to find out info online, hopefully word will spread…

I think this group is helping with awareness, big-time!!!

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Hello,

I’m having a hard week with symptoms. Not sure why but the other night I woke up out of the blue at 2:00am with my heart racing. I remember having good dreams so I don’t think that was the cause. Anyhow it continued for the rest of the day and finally I went to the pharmacy to have a blood pressure screening. It was 147/90 which is really high for me. So, yeah not sure why it’s elevated but, I’m still feeling really off. Also, I feel a bit unbalanced but not dizzy, sometimes I feel tingling/numb sensations down my arms and in my hands, heavy winded and fatigue easily especially going upstairs, floating sensation and heavy pressure in my head! I’m done going to my family for advice as they think it’s all in my head. I’m not even talking to my Father-in-law right now because he was so insensitive by saying it’s just stress, I’m panicking, and high strung. My husband even offended me when he said that ever since I’ve learned about ES my symptoms are suddenly worse! It’s a bunch of BS if you ask me because even though I’m having these scary symptoms I’m handling it extremely well not getting emotionally wound up by it! I’ve had these symptoms before but they just come and go and are worse at times. If anything I think my symptoms got stronger after getting my two top wisdom teeth taken out almost 3 weeks ago! Honestly, I just feel really crappy and just looking for some support! I don’t even know if I have ES yet but will find out soon! My CT scan is on Monday. I think for me what’s most scary is that my CT scan will come out fine; no findings and I’m left in complete darkness again not knowing what’s causing all my debilitating pain!! Attached is a pic of my panoramic x-rays where my oral surgeon first noticed my styloids. Have a look and let me know what you think :slightly_smiling_face: Thanks!

image

Hi Christy!

So glad you checked in! Here’s reassurance for you - Your styloids look elongated to me. Your left one has an interesting curve to it as well. You’re not being a hypochondriac. The vagus nerve is often irritated by elongated styloids & so is the accessory nerve. The vagus nerve plays a role in heart rate function, blood pressure, gastrointestinal function & anxiety levels. The accessory nerve helps innervate the shoulder which in turn can affect arm nerves (thus tingling there). The jugular vein &/or carotid arteries can be compressed by elongated styloids. When vascular tissues are compressed (often only when your head is in certain positions), then light-headedness, vertigo, a feeling of being “off”, & intracranial hypertension can occur.

I have to tell you, I’m not a doctor, but w/o giving you a diagnosis, I can say plenty of people on this forum have had your exact symptoms from nerve & vascular compression from ES so you’re not in “la la land”.

I had the opposite problem w/ my bp - mine would drop really low when I was exercising & leave me breathless & light-headed. It was scary so I totally sympathize. Jules had the intracranial hypertension problem.

Experiment w/ head positions to see if there is a position that seems to give you relief from the light-headedness & intracranial pressure. If you find relief in certain positions, that can be telling as well.

Take deep slow breaths & try to relax. Even that may help your symptoms calm down a bit.

So glad your CT scan is Monday. I believe it will show what you’re hoping to see.

You’re in good hands w/ this forum and I hope this post encourages you to keep moving forward. Surgery should make a world of difference for you if you elect to go that route.

:hugs: :heart:

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Hi there!

When I was searching for answers I had a friend who was constantly endorsing me for not freaking out. I was so proud of myself. I was on the verge daily. I did end up going on an antidepressant but that was after a doctor said he couldn’t operate on me. I was a bit hopeless until I found the surgeon who helped me. You are doing great! I’m so glad you found us.

I wish when people didn’t really know what to say that they would just chose to say nothing. Words can hurt. Just talk to us while you figure all this out :heart: