Undiagnosed, New to ES

General
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Hi everybody, I am new/undiagnosed to ES but not new to the symptoms that we all seem to be struggling with. My story starts about 4-5 years ago when I started having pressure/pain in my right ear. That pain gradually moved to below my ear, down and behind my jawline, down the front and back of my neck and around to my shoulder blade, along with up to my temple/eye. I also started having difficulty swallowing and the feeling of something stuck or poking my throat. In addition, I started having symptoms that I thought were unrelated such as heart palpitations, digestive issues, fatigue, brain fog, etc. Over the course of this time I had countless tests done (MRI’s, x-rays, blood tests, etc.) and everything has come back normal. I have seen a dozen or more specialists and tried probably twice as many treatments with no success. I even spent two months in Florida seeking Prolotherapy injections for cervical instability. Nothing has ever made a difference. I recently have been actively pursuing chiropractic, acupuncture, physical therapy and massage therapy which all seem to be making my symptoms worse. Over the past couple of days I started researching deeper into my symptoms and came across ES, which seems to match up exactly with my symptoms. It is hard to imagine that none of the specialists have mentioned it as a possibility. For the first time in a while, I am hopeful that I might actually have an answer as to what might be causing my symptoms. I am grateful that I found this resource, and have been amazed by the support and commitment from the members. As I am just now starting my journey with ES (possibly), I do have a couple of questions that I am hoping are easy to answer:

  1. I reached out to Dr. Samji’s assistant who sent me the following requirement before being able to book a consultation: “Measurement of the Styloid on CT scan (head and neck w/out contrast).” My question is, when I go to my ENT or directly to imaging, what exactly should I request in regards to the CT scan? Since this condition doesn’t seem to be well known, I am expecting to have to push and be very explicit with what I need for a diagnosis.

  2. I have also been having low back pain on the right side that wraps around to the front of my abdomen. Has anyone else had these symptoms related to ES? I have always thought they were unrelated, but they are only on the right side just like all of my other symptoms and they started around the same time too. I am not sure if it is a coincidence or not. Again, treatments have only made this worse as well.

Thanks for the help and I look forward to being an active member of the community throughout this process!

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Hi & welcome to the site!
With regards to the CT, I’d request a CT of the head and neck, making sure that it extends down to just below the hyoid bone. Ask that it is evaluated for ES, the radiotherapists should be able to get that done! They need to measure the styloid process & look for calcified ligaments (that should be standard for evaluating for ES, but I agree that there seems to be so much ignorance still…) If they don’t do the measurements right, I think from previous discussions that Dr Samji will check that himself anyway. I’d request copies of the scan if you can, & the report, as sometimes they get lost! And you have a copy if you need to send one anywhere else.
I would definitely leave off the chiropractic & massage therapy for now as unless someone is experienced with ES they can definitely make it worse.
As for the back pain, there isn’t necessarily a link between ES & back pain, but people have had weird symptoms, for example numbness or tingling in legs too. It could be a vicious cycle with pain causing muscle tension & inflammation, then more muscle tension etc, that could be affecting muscles down your back ? It’s worth getting checked out, otherwise if you haven’t tried muscle relaxants, like Baclofen, then it might be worth considering.
I’m glad that you’ve found us, & hope that you can get your scan soon!

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Hi alawton3214,

Jules gave you good, complete information but I wanted to confirm that Dr. Samji does do his own styloid measurements once he receives the CT scans. He’s found that the radiology report measurements aren’t always accurate, but they do give him a point of reference. He’s also learned, after doing several hundred ES surgeries, that CT scan images don’t always reveal the exact length of elongated styloids & finds them longer than expected when he’s doing surgery.

It is important for your doctor to specifically order the type of scan Jules mentioned & to request the scan be evaluated for Eagle Syndrome. He must also specify that the report contains styloid length & mention stylohyoid ligament calcification if there is any beyond the styloid elongation. If your doctor doesn’t request these things be reported, then some radiologists only note the styloids are elongated but not how long. You will not be able to ask for that information to be added to the report at the time of your scan, if your doctor neglects to do so, as those orders need to come directly from the referring doctor.

Dr. Samji did my surgeries in 2014 & 2015. I can’t say enough good about him.

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Thank you both for the very detailed information. I think I am going to have difficulty finding a doctor that knows what ES is (or is familiar with it), let alone knows what to request in a CT scan. I am sure I will need to be very specific and somewhat pushy to make sure I get the correct diagnosis. It sounds like I am not alone though!

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Where are you located?

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If you’re able to contact the doctor(s) that Snapple2020 suggested, it sounds like you’ll be a step ahead of where you are now.

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I was able to get a CT referral! I had to be very persistent and explain in detail what ES is. The doctor is still very skeptical, but is willing to listen and ultimately do what is best for me (maybe it was just easier for him to say yes instead of continuing to push back). I was even able to get him to specifically list ES, measurements of the Styloid Process and ligament calcification on the referral. Hopefully that will be enough to get what I need. It is scheduled for next Tuesday. I am on my way!

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Hi,
I have been away from the forum for a long time because I have been sick. (Hello everyone!)
The symptoms that you describe sound a lot like me. Mine started in May 2016, with left ear pain/pressure, like an infection. I noticed that the only thing that helped me was sleep. I started to have swelling directly under my ear. Again, it started hours after I woke up, then would hurt really bad for an hour, and the cycle repeated until I went to sleep.
I also had pain under/by the jawline, my left eye felt like it stung and watered all the time. I developed pain in my left shoulder- my trapezius muscle in my back was stiff, along with my chest muscles. The chest muscles became so tight it pulled my left shoulder forward.

After 6 months or so, pain was full time - my spine doctor referred me to an orofacial and TMD pain specialist. He found that my left Sternocleidomastoid muscle ( SCM) was permanently spasmed. This muscle allows you to turn your head. It connects to your sternum, and when very tight, pulls forward toward the sternum. It also made my head tilt to the left. This makes your shoulder blade really hurt! The reason this occurs is because your scalene muscles are just behind the SCM and those attach to the shoulder blade.

If anyone turns their head left or right you can see the SCM sticking out, from behind the ear down to the middle of your chest.

If you have a tight SCM, the question changes to Why? With me, it also turned out that I was clenching my jaw so quickly that I didn’t notice it happening, and I wasn’t grinding my teeth. Have you seen an orofacial doctor yet? I know you have had loads of tests and have been through a lot!

There are a few main reasons why the SCM can be tight. One of these is called sternocleidomastoid syndrome. I want to bring this to your attention because the symptoms are extremely similar to “atypical Eagle syndrome”.

For example: “ The clavicular division of SCM trigger points can produce pain over the forehead and around the ipsilateral eye, over the cheek, the tip of the chin, sternoclavicular joint and deep in the throat upon swallowing
Nausea and fatigue can also be attributed to this. TMD can be involved but not needed.

Another reason for a tight SCM is sleep apnea, which can cause jaw clenching. Do you notice more pain in the AM? Does your throat stay the same, or does it come and go?

Do you remember if you had a fall or accident before everything began? It could be minor.

So, I could have qualified for either the two above diagnoses.

What gets my attention and makes me think that you might have ES is that massage/treatments are making you worse. The same thing happened to me. I tried some YouTube “trigger point release” on my SCM and WHOA NELLY NOT GOOD.

The other thing is heart palpitations and nausea- vagus nerve.

For some reason I can’t see Snapple’s comment- I am in WA state. I was diagnosed at the end of November 2019 with ES. The only problem- my surgeon wants to go in through the mouth and has no intention of removing the ligaments. I have convinced 3 people at the UW, they all think that I can change his mind. But that isn’t happening until I get better from another nameless problem.

Anyhoo, I still get the digest and saw your introduction, and I wanted to share what we have in common. I wish I will be able to keep logging in…either fatigue gets me, or I feel too sad as I can’t get the ball rolling for my ES.

I am in serious Snapple withdrawal however :stuck_out_tongue_winking_eye:

Oh, also….One of the big nerves with atypical ES is the accessory nerve - which controls the SCM and trapezius.

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That is happy news, indeed, alwaton3214! We’ll wait anxiously to hear about your CT results.

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Hi Gwendolyn!
Thanks for sharing your story/symptoms. I am sorry you can’t the help that you need right now. I hope that things get better so that you can start pursuing treatment for your ES.

I have not seen an orofacial doctor yet. I think that may be the only specialist I haven’t seen. Pretty much everybody I have seen has contributed my symptoms to tight muscles that are caused by poor posture from sitting at a desk all day. Most of them do point to SCM syndrome as the most likely culprit. I would tend to agree with them aside from the fact that treatment for that hasn’t helped or even made it worse. Before doing my own research and finding ES, I had resigned myself to the fact that it was muscle related and I just needed to push through the pain in order to get better. I was doing chiropractic work, massage therapy, physical therapy and acupuncture. my symptoms definitely got worse, but all of the doctors said that is common as your body is trying to change. Without knowing if I have ES (or Ernest or Hyoid syndrome), I am hesitant to keep pushing my body since I don’t know if it is causing more damage. With the CT san I will at least be able to have a diagnosis and pursue treatment for ES, or go back to other treatments without worrying about causing further damage.

I have had a sleep study done, so I know I don’t have sleep apnea. The pain in my ear/jaw stays pretty consistent throughout the day. The level of pain doesn’t go super high (maybe 6 out of 10), but it is pretty much always there. Luckily it doesn’t bother me when I sleep. I am also nearing the completion of a 2 year TMJ treatment where they physically grew my upper jaw to release the tension that my lower jaw was putting on my TMJ’s. Unfortunately that treatment hasn’t helped at all.

I also can’t remember any falls or accidents that occurred right before my symptoms. I have been pretty lucky in that regard.

Thanks again for sharing all of that information. Hopefully by this time next week I will have an answer!

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Great post, Gwendolyn! We’ve missed you! I’m so sorry you’ve been sick for awhile & you’re still “treading water” w/ solutions for ES. I’ll get back to praying for forward progress for your recovery from the unnamed problem so you can move forward into vanquishing ES. We have had members who’ve had both their styloids & stylohyoid ligaments removed intraorally, but they commented that several incisions had to be made in the throat for that to happen. You could try discussing that approach w/ your ES surgeon.

Snapple’s message isn’t on this thread. I’ll try to find the one I referred to & send you the link. Found it!
It’s in the Rough Road…post - Rough road...not sure where to go now - are these styloids 'normal'? - #20 by alawton3214

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Wow! We sound like twins… I have the small jaw issue as well. Did you have that DNA appliance or some version of a palate expander? Just having that done could set off ES, that makes a lot of sense. Do you have Tori?

I agree that because treatments make things worse to stop, get the CT. I was so happy when I found this group Isaiah and Jules were a huge help and I avoided intra oral. I think the risk of the deep pocket infections, having no nerve monitoring, and just everything- not for me. Oh, also can’t get nerves decompressed.

I found a study that went back and reviewed a million other studies and they determined average time for recovery for both procedures was 28 days (not talking about left over symptoms). Looking forward to your CT results. I am sorry I did the super long lecture thread - obviously you didn’t need it …. But I like to be thorough.

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Hey you!

I am definitely not going intra oral.
I really don’t know why my doctors think I can change a surgeon’s mind…I know that he just doesn’t know the atypical ES. Loads of new research, however, on the non traditional ES lately. I have also noticed a trend in using “Styloid Syndrome” to include stylohyoid and non vascular/ non tonsillar fossa type ES

I will have to figure out how to see Dr. Sanji for the surgery if I can’t change my surgeon’s mind….and I hope I don’t have to pay out of pocket. Hugs so great to hear from you all!

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It does sound like we have a lot in common! I had a palate expander for about 6 months, followed by braces to close the gaps. I actually just had the braces adjusted 2 days ago and it caused some significant flares in my symptoms. What is Tori?

I am so glad I found this group. The support and information has been incredible. If I am diagnosed with ES, I will definitely pursue treatment from Dr. Samji.

I enjoy the long posts. We all have been through a lot which is hard to condense. We can all learn from each other’s experiences. Thanks for sharing!

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Tori are bony projections in your lower jaw under your tongue (mandibular tori), roof of the mouth (Palatinus tori) & even in the gums (usually not in all 3 places though). They are hereditary, I believe, & can be minimal or sizable. I have them. When I eat crusty French bread, my tori get scraped & hurt a bit. My dentist pointed them out & said if they’re a problem they can be shaved down. Normally I don’t notice they’re there so no shaving down for me! (Sounds painful anyway!!).

If you Google dental tori & click on the images link, you can see all sorts of tori.

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Thanks for the explanation. They sound rather bothersome. I wonder if people with ES are more likely to have Tori?

I must not have any. I don’t feel them and I am sure my dentist would have noticed them by now.

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Good morning

I need a mode to translate to Italian its possible?
"thanks

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Hello and welcome here. Sorry for all the pain you are going through. My doctor ordered “high resolution 3D CT scan” for my ES. His nurse said it has to be 3D and I told the imaging technician what we were suspecting and looking for. Yesterday, I got a second copy of my images/disk. My images look different from the ones posted by some of the members here. I could not figure out where my SPs/Ligaments are on mine! Good luck and hope all goes well for you.

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So sorry that you’ve not got any further with the ES treatment; I understand that you’re reluctant to have intra-oral, so I hope that you’re able to get to see Dr Samji.
Thanks for the info & the explanations about the SCM! Sending you a hug :hugs:

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If you copy & paste the past into translate.google.com that would be easiest. Sorry we can’t help you out more!

Se copi e incolli il passato in translate.google.com sarebbe piĂą semplice. Ci dispiace non poterti aiutare di piĂą!