My story and introduction to ES

Hi, I’m new here. I had a CT scan last week and was just diagnosed on Thursday. I saw the results of my CT scan online before meeting with my ENT this week for the official diagnosis. It was a holy crap moment when googling Eagle Syndrome because I have been dealing with my symptoms for over a decade. I think they started in 2010. And every Eagle Syndrome symptom that was listed applied to me. It was validating and upsetting after years of having my symptoms dismissed and ignored by every doctor I saw.

The ENT who diagnosed me is my favorite person in the world right now. He was the first doctor to ever actually listen to me. I saw him about 4-5 times in the last year. He got my acid reflux under control, that I didn’t even realize I had because I didn’t know a lot about it and just thought I had heartburn a lot. He listened to me and believed me about how bad my pain was. He tried to find out what was going on with me, unlike every other doctor who told me my ears and throat looked fine or my neck lymph nodes felt fine and wrote off all my symptoms as TMJD. He tried a few things until ultimately telling me it was time for a CT scan. He told me he would never feel comfortable performing the surgery because he has never done it and has never seen it done. He said in the right hands I will be fine and reassured me.

I have a couple questions for anyone who is still here with me after those long paragraphs…

Does anyone else have crazy pressure in their ears and jaw/face pain from elevation changes and flying? I have had my ears checked and I’m always told they are fine and I am curious if this could be an Eagles symptom.

I don’t know much about the exact anatomy of the styloid process’ proximity to the jaw joint and if it has any effect on TMJD or if it’s possible that it could? I ask because the majority of all of my symptoms are on the right side. I honestly was almost convinced my jaw could be dislocated on the right side. But when I saw a specialist for my TMJD he said that there is no bone deterioration and both sides of my jaw were set a bit further back than they should be in the joint but otherwise they were fine and they just need to adjust my bite forward. I think that doctor was a quack for many reasons and want a second opinion but that’s a different story. I just didn’t know if the dislocated bone out of place feeling could have anything to do with my styloid process. I don’t know if that’s a silly question because I’m not entirely aware of the anatomy and proximity.

Does anyone else deal with a feeling of often being unable to get your head and neck to sit in the right place to feel comfortable? I feel like I have to adjust and readjust my head sometimes like something is in the way of me being able to align my head and neck. My ENT thinks that is an ES symptom.

I’m definitely going to find a surgeon and hopefully get surgery next year. I want to find the right insurance that will cover a qualified surgeon I could feel safe with. I have seen the doctor list and I will do all of the research. I want to wait on the surgery because I’m getting married this September and need to pick the right insurance. My fiance has been so supportive when I have bad pain days and I really hope things get better from here.

I have written a lot here. I have a lot more questions but I think I’ll stop here for tonight.

If you read this entire post, thanks for sticking with me. Thank you for letting me join this community.

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Hi @Morganizer,

Thank you for sharing your story. As you noted at the beginning of your post, your symptoms all align w/ ES including the ear pressure & face pain when flying or from elevation change. Elongated styloids can put pressure on your trigeminal nerve which does influence the sensation of pressure in your ears & definitely can cause facial pain. It has 3 branches (see image below) on each side of your face. It can be responsible for pain in your teeth, nose & can cause migraine level headaches (usually above the eyes). The facial nerve is also often irritated & it too can cause facial pain. There is a series of videos on YouTube called Two Minute Neuroscience. It’s a series of 2 min. videos with each video covering one cranial nerve. The cranial nerves affected by ES are the trigeminal, facial, glossopharyngeal, accessory, vagus & hypoglossal nerves. Try to watch the videos for each nerve as they will help you understand where some of your symptoms may be coming from.

As far as the feeling of getting your head in a comfy position, that is definitely an ES thing. Depending on the length/angle of your styloids, they can make symptoms worse with even tiny head movements thus it can be really hard to find a comfy head position. You can try icing your neck (15 min on & 45 min off), or, if ice makes the pain worse, try heat. Also for some people, sleeping w/ head elevation is helpful. Some members have found taking a nerve pain medication is helpful i.e. Gabapentin or Amitriptylene, etc. You would need to talk to your doctor about that. One other thing that has helped some members for the short term is an ultrasound guided injection of lidocaine/cortisone into the tonsil area of the throat.

Please keep asking questions. We’re here with answers. You may find using the search tool (magnifying glass icon - upper right) very useful for quicker answers. Just type a key word from your question into the search box & send it off. Posts with discussions on that topic will come up. There is much to read on our forum!

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I’m going to call the hospital where I got my CT scan done to have them send a copy over to me. My ENT just told me my styloid process are both very long and almost to my hyoid bone. But he couldn’t get me a copy because the hospital that did it has to send it. I want to see them! I am curious how long they are and how they’re shaped, I want a better idea of what’s going on.

When I had my CT scan done, 4 images were included that were in 3D. Many radiology labs don’t include 3D images. You can create 3D images from your CT slices using free software from the internet or by following the (now somewhat old instructions) we have on our forum. Some labs will translate your CT into a few 3D images if you ask. If you need guidance for converting your scan into 3D once you have them on disc, please ask & we’ll send you a link or suggest online apps you can use to do that.

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So, basically everything every doctor has told me for years is a lie and I’m not crazy like they made me feel. That image of the nerves is like a map of my pain. I will go on so many rants if I don’t reign myself in. But I’m so grateful I finally found one good doctor.

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Thank you so much! I will ask if they can do 3D images and if not I will be here asking for help

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The problem w/ ES is that it affects a number of nerves which affect a number of body functions &/or cause pain in various places of the body that don’t add up to a specific diagnosis in most doctors’ minds so they pass off the symptoms as stress, hypochondria, TMJ, etc., & send people off to other specialists. Some docs will Rx meds or surgeries (especially for reflux) which are not helpful because they mask or don’t target the cause of the symptoms. It takes a doctor like the one you’ve finally found who is willing to leave no stone unturned to find the source of the symptoms. You’re very fortunate to have found a “rare jewel” in the medical world.

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Yeah, when I saw my PCP after my CT scan and asked her if she knew about Eagle Syndrome she said she thinks she had heard of one case and has to look it up to remember what it is. So, I can see how a diagnosis is missed for so long. I got to the point of just not mentioning a lot of symptoms with new doctors because I just felt like I would be ignored or written off. I’m glad I kept pursuing it this time. I feel immense relief. Not physically but definitely emotionally.

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If you get a copy of your CT images in a CD or USB stick, try RadiAnt Viewer software (trial version for 30 days is more than enough).

It’s very intuitive (literally there is a 3D View button in it) to use and has plenty of features should you need advanced functionality (slicing the 3D view for example).

Slicer 3D is a great software too but it’s an overkill for this task.

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Thank you!

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Hi & welcome to the site Morganizer!
Well done for not giving up, & great that you found a doctor who kept looking until he found the diagnosis! Good too that he’s honest enough to accept that he isn’t qualified to do the surgery, & totally agree that in the right hands the surgery is usually successful.
I had head & ear pressure- my jugular veins were compressed & that caused increased pressure. I did still get some pressure when I flew a couple of years after surgery (possibly the veins hadn’t completely sprung back open), although it wasn’t as bad as the pressure before surgery, & outside of flying the ear pressure is loads better, it definitely can be caused by ES…
Lots of members have TMJD alongside ES, so it could possibly be linked- there are others on here who know quite a bit about it so they might chip in. It’s been mentioned on here that some people have found their bite changes a bit after surgery, so it’s worth pursuing ES surgery before paying out for expensive bite guards.
I think the feeling of something catching in your neck is quite common, is that maybe how you feel when you say that you have to adjust your neck to get comfortable?
I’m glad that your fiance has been supportive, & a good idea to get insurance sorted & research doctors before going ahead with surgery, it’s important to find someone you feel confident with.

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Welcome! I think many if not most of us have had similar experiences. I know I saw five ENTs and who knows how many other doctors before I got my diagnosis. Doctors work with what they know, and very few know about Eagle. And unfortunately very few are willing to think outside the box and look for answers that don’t fit their preconceived notions. So glad you found one who does!

I have TMJD as well – my joint IS misshapen, and I suspect that contributed to the development of the Eagle. I am scheduled for surgery next month. I second the suggestion that you deal with the Eagle first, and then explore the jaw issues. That is an entirely different animal, and again difficult to separate the real experts from the ones who took a weekend seminar on “How To Make Gobs of Money Treating TMJD.”

You will find a lot of support here!!

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Welcome Morganizer, I am so glad that you have found this place. You have pursued in finding this place and now you can fully understand the suffering that goes along with ES. Here, you will find answers and people who will encourage you in this hard and painful journey.

I too went through allot of different doctors and my experience was a long, long time of dealing with ES. It took me 17 yrs before I moved to Oklahoma City and found Dr. Greg Krempl. So many doctors were dismissive of me, I had just had a baby on December 8, 1987 and on December 24, 1987 was when I felt the first symptom of ES. It felt like I had a fishbone stuck in my throat and the pain was unbearable! From that day on, it was hell on Earth. I lived in Houston, TX. and I was in a major “trauma” Medical Center and nobody could find what was wrong with me…They said I had Post Partum depression because I had just had a baby…Really??? Well, when they couldn’t explain what was wrong, they said I had reflux, stress and heart problems…NOT.

I moved to OKCity and went to University of Oklahoma Medical Center and it was there that Dr. Krempl diagnosed me. His colleague Dr. R Layton Runkle also an OU Physician did my surgery. He went through my mouth and cut out the calcified ligaments from my ears on both sides and also removed my tonsils to cut out everything under my tongue and the back of my throat .

It was the surgery from hell but, I am here to say that, It was a hard surgery but, I survived it and my life totally changed for the better. You will have your bad days and few good days but, time will be your friend. I wish you well and I hope that you will do the surgery and that’s really all you can do. To not have the surgery is to prolong your suffering. Hugs,

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Hi! Let me first say I am very happy you have a diagnosis. Secondly I would make that 3D because it is helpful in understanding where the styliod is and how long it is. There is a list of doctors who have experience or posting where you live to the group might generate some recommendations. In the mean time I suggest you keep your head support with good posture especially using a computer, reading or watching TV. Also it is best to avoid massage (except for gentle massage you do yourself) on your neck and shoulders. My pain would spike if I lifted heavy things, talk with my head turned or someone putting pressure in my shoulders. It is important to keep your health up but when going to dentist do not have long appointments with your head turned. Any movement can cause the styliod to interact with nerves and other structures in the neck. I have had both sides removed and my jaw issues became much better after surgeries. For me surgery was very easy after the first 24 hours. Good luck on this journey……

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Thank you for sharing great advice, @ann! I’m so glad you’re doing well & surgery made a big difference for you. :hugs:

@ann I’d assume the other symptoms like painful neck and shoulders did disappear too?

Thank you guys for all the support and suggestions! I’m relieved to have a diagnosis and my stress from always wondering what could really be wrong with me has gone away. I’m taking it one day at a time.

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HOORAY! I’m so glad you’re feeling less stressed. That is awesome news!! One day at a time is good w/ ES & even once it’s taken care of!! :hugs:

After surgery I needed to work on my tight muscles in my face neck and shoulders. I used a release technique called myokenestics by Dr Mike which you can google. It took about 6 months of therapy

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Thank you for this information, Ann. I’ll look up Dr. Mike. MyoKinesthetics sounds interesting.