New to ES & this board- my story

Hey everyone! I am so not happy to be dealing with what I highly suspect is ES but am SO happy to have found this forum. What a wonderful resource in the face of such a rare and confusing syndrome.

A quick intro to me- my name is Lauren, I’m in my early 30s, have always been very healthy, was very into weight lifting, am a creative type and use my dominant arm and voice heavily for a living. All that has been interrupted and I’ve been completely unable to work as my throat and right arm have been highly effected by what’s going on.

How it started- perhaps the silliest backstory you may come across on here. My symptoms came out of NO WHERE this past September, four months ago, a day after I spent hours in a contorted position trying to pick ~150 splinters out of the back of my leg. I even asked my partner to push my neck down further so I could try to see better (he tired to get them out himself but I stubbornly took over after a while). What a huge mistake this was. I was twisted with my neck looking to the left, and as far forward and down as possible. The next day, I noticed a very weird sensation where I now can assume was my stylohyoid ligament on the right side of my throat. This sent me into a panic because the only thing I could think of was that I was having a stroke and I spiraled into some major health anxiety. This was also the same day my sore throat began, but I attributed it to smoke in the air at the time from CA fires.

Despite the anxiety and a lot of symptoms that came along with just that, I knew something was still genuinely wrong, and it only got worse after I saw a chiropractor two weeks later. He gently twisted my neck while I laid on my stomach, and when he pulled to the right side, it felt very different to the left- resistant and not right. After that, my symptoms got five times as bad. I had extreme neck tension, especially when I spoke, felt like my throat was closing up, arm pain went from a slight symptom to debilitating.

Many things ruled out, countless nights googling symptoms, dozens of anatomical diagrams, thousands of dollars in band-aid type treatments, 2 diagnoses, 15 different doctors and specialists later, I strongly started to suspect ES was actually the root of the problem. (For reference, I was first diagnosed with Muscle Tension Dysphonia, and then a hive condition which I will more so assume is anxiety related).

Just before the new year, I got a CT scan with and without contrast which confirmed that I have elongated styloid processes (to my surprise, on both sides- 33mm and 32mm) and ossified stylohyoid ligaments on the upper portion. The ENT that’s been seeing me would not diagnose me with ES, however, as he’s never seen a case of it in his 30 something years of practice, and told me to get a second opinion.

That’s where I am today. I’m in the process of finding an ENT I can see who has seen ES before. I’m still unable to work, I just started to do light cardio again and I can’t believe how much my life was turned upside down overnight. It’s hard not to look back and think about how much I took feeling ‘normal’ for granted.

Some of my most prominent symptoms (almost entirely on the right side of the body)

  • chronic sore throat
  • dull but intense right arm pain/weakness
  • base of skull, neck, traps, chest and shoulder muscular pain
  • hoarse voice, strain/running out of air quickly when speaking
  • sometimes headache only on right side above eyebrow
  • feeling of right eye “pulling”… it may just be dry, but it feels… slow compared to the left
  • jaw and occasional shooting facial pain
  • ear pain
  • mild blurry vision
  • sometimes pain at salivary glands under tongue and near back teeth
  • easily excitable heart rate from mild activity (getting up and walking across the room- this has persisted even as my mental anxiousness has relaxed over the months)
  • heart palpitations that seemed linked to head position (cardiologist cleared me, could be more anxiety related)
  • pulling and poking sensation in right side of stylohyoid complex area depending on head and spine position
  • occasional muscle spasms under my chin (I believe this is the tongue based on what a speech therapist told me)
  • Have had slightly low BP
  • difficulty swallowing, particularly with getting good contact from the back of the tongue (this has led to some issues with choking on food more easily, as it sometimes feels like it gets stuck at the top of my throat and can’t be pushed down)

There are more but they come and go and this is what’s coming to mind first. I’ve had two concussions earlier in my life. One from a car accident at 17 (but was hit from the side and not sure if I had whiplash), and one in 2019 from falling and hitting my head (which probably mimicked whiplash much more). But all symptoms came overnight this past September.

Really hoping to avoid surgery, as I’m terrified of permanent damage to something like the trigeminal nerve. So far the only thing that has significantly helped is getting my c1 (atlas) adjusted by an upper cervical chiropractor using the Blair Technique. I’m not sure why this is, but after an adjustment my arm pain goes away as does a lot of my muscle tension in my neck, back and traps. It’s like I’m creating space between my transverse process/c1 and taking some pressure off whatever the elongated styloid process is probably pushing on). I can tell when I’m out of alignment because the arm pain and jaw pain comes back first. I thought the atlas misalignment was my true issue for a while, until even after adjustments, the poking and pulling sensation in my throat, and sore throat persisted.

I don’t know where to take it from here but, thank you to everyone who contribute to this community. I’m so so so happy it exists to make this very scary syndrome just a tiny bit less scary.

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Hi, nice to ‘meet’ you!
In the Newbies Guide Section there’s an explanation about ES symptoms & what might cause them, if you’ve not already seen it, here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
As you’ll see, they could be ES related- for example the Vagus nerve can be irritated by the styloid processes, which can cause heart arrhythmias, & anxiety among other symptoms. I think you’ll see that others have experienced all or some of these!
I would be wary of having any chiropractor do techniques unless they’re knowledgeable about ES, although you say it helps, it could potentially do more damage. (Although I’m UK, & I think that chiropractors are more qualified in the US than here, but might be an idea to check they know about ES) One of our members is a PT & wrote a paper with info other PTs, here’s a link:
Doctor info and research article - General / Research Papers - Living with Eagle
We have had members with elongated styloid processes & also C1 elongated processes, C1 mis-alignment, it might be an idea when you find a doctor with experience to check about the C1 process as well. Also, was there any mention in your CT report about whether the stylo-hyoid ligaments are calcified? This can often happen too, & can also cause symptoms.
Unfortunately there is no ‘cure’ for ES other than surgery. There are medications which can help with nerve pain for example, or muscle relaxants to help with extra tension from irritation & pain. Steroid injections/ lidocaine injections into the tonsillar region can help, but these are only temporary & it’s not something you can repeat too often.
But surgery, if done by an experienced surgeon, is less risky & generally successful. It’s a personal decision whether to have surgery- we all have to balance how badly the symptoms are affecting our quality of life, versus the risks of surgery. It sounds like yours have been pretty bad, if you’ve not been able to work or do much exercise, so personally I would think it’s worth looking into. Dr Samji in CA is one of the most experienced US surgeons that we know of, so I’d suggest getting a consultation with him (He does do phone consults if it’s a way for you to go). See what he says & take it from there! There’s info about contact details, & what he needs re scans etc in one of the discussions:
You can contact Dr. Samji’s office by emailing his medical assistant Yerelin - yerelin@caminotent.com
“So the only 100% needed item is a CT neck NON-contrast styloid protocol which specifically measures the length of the left and right styloid bone. This is the only way to guarantee a diagnosis of “eagles syndrome” in our office. Once that scan is received with the report that states the measurements of the styloids then we book a new patient visit to discuss options.”
Also Dr Chettri in UCLA has done surgery:
Great Dr in los angeles UCLA just had ES surgery - Symptoms and Treatments / Doctor Information - Living with Eagle
Dr Milligan in Arizona also is very experienced.
Here’s a link to the Doctors List:
US Doctors Familiar With ES, Current List - Symptoms and Treatments / Doctor Information - Living with Eagle
Hope this helps & best wishes!

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32mm converts to 3.2 cm. Anything over 2.5cm is considered in the Eagles realm diagnosis. Some of the ES diagnosis show a history of whiplash or neck injury and tonsils removed.
I had 2 whiplash myself early in life and seeing chiropractors (and all kinds of body workers) for decades. My first ES symptoms I became aware of what I describe as a bone in my throat. The pain started on the point in throat I felt this and traveled up my neck to ear and exploded like a firework. The pain was severe. The only thing to knock it down was dexamethazone - a steroid. I had increasing pain flairs over 5 years and was diagnosed with ES in Dec 2019. I had surgery in April and then the second side in Dec about 4.5 weeks out. Since you are in CA, our favorite doc (or mine) is Dr. Samji in San Jose. He is one of the more experienced in this country and done over 500 of ES surgeries. You can send him you CT scan and get tele-health appt.

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medical assistant has changed at Samji’s office. It is: yerelin@caminoent.com

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Thank you both for the info. I’ve already sent an email to Dr.Samji’s assistant to see if I can get a proper diagnosis from him.

Jules, sorry I didn’t explain the c1 situation very clearly- I was found to have a c1 misalignment before I knew about my elongated styloid processes and ossified ligaments. This is sometimes called atlas subluxation by chiropractors and the symptoms of that are all over the board but many aligned with the issues I was feeling ,so I thought this was the source of my issue for some time.

An upper cervical chiropractor, who only deals with the top vertebrae, took 3D imaging and diagnosed this misalignment (but missed my elongated styloid process which I later saw when I asked to re-examine my 3D images as I was starting to suspect ES). The Blair Technique he uses to adjust the c1 misalignment is EXTREMELY gentle, to the point that it almost seems like nothing is even done, but it’s had all positive impacts on relieving a lot of my symptoms. A general chiropractor made my symptoms worse with a slow neck twist to the side very early on in my symptoms but I have not gone to a general chiro since then.

The symptoms that persist even after a c1 adjustment are sore throat, difficulty speaking, and the sensation of a dry or pulling right eye. Almost all of my neck pain, trap and shoulder tightness, arm pain, and jaw pain is eliminated with the c1 adjustment about once a month. When I am out of alignment I can tell because all those aforementioned symptoms return all at once, and disappear again upon adjustment. Curious if anyone else here with ES has tried C1 adjustment with the Blair Technique and had any relief as well.

But the sore throat not going away is an issue since my job relies on my ability to speak for quite long periods of time. I’ll update after I can meet with Dr.Samji!

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You are in good hands Philly with Dr. Samji. A recent CBCT at TMJ specialist shows my C1 C2 rotated left which I think is pretty much a chronic state. When they are out, I have some bad occipital headaches and all the same symptoms as you. Just made my monthly appt with chiropractor for adjustment. It is the only thing that helps along with deep tissue massage. Unfortunately, I have found the Blair method to be too gentle and need a good crack.

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Welcome to the site @phillyeagle! It sounds like you have had some terrible pain. My symptoms also happened over night. One day I was fine & the next, I couldn’t stand up or work. I am so glad that you are seeking out Dr. Samji in your area. He sounds like he is an expert & will take good care of you. You have definitely done your homework. That is great! I have found that the stories & people on here are such a great resource, especially with such a rare condition as we have. Keep us posted on your journey.

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Hi phillyeagle,

Your symptoms list is very similar to mine. My very first ES symptoms were that I began choking on my food when eating. That happened a couple of years before I began having symptoms from irritated nerves including heart palpitations, racing heart w/ exercise & blood pressure drops among many other things. This syndrome is one crazy bird!! I’m so glad you’ve found us & that you’ve contacted Dr. Samji’s office. I hope he gives you some good food for thought when it comes to surgery vs no surgery.

As we say on here, ES symptoms often get to a point where one can no longer live a normal life. That’s the time at which we recommend considering surgery. If symptoms are well managed & not affecting life much then surgery should be put off.

We are here to walk this road with you. Please feel free to lean on us as your journey continues.

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Oh, interesting! You’ve already had surgery for your ES?

Thank you so much! It’s actually really helpful to hear I’m not alone in having this all happen out of seemingly no where. It’s hard not to feel like you’re going crazy with something like that. And then what a strange feeling it is to both feel incredibly validated and incredibly scared at the same time to see that elongated styloid process for the first time. Have you had surgery or are you treating yours in other ways?

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Makes sense! I’m sure everyone’s ‘breaking point’ is different.

What would you say is the most common non-surgical treatment those on this forum have found some success with? Have you noticed any common threads between the people here besides things more clinically associated with ES (like trauma injuries)? Lifestyle? Work? Posture? Stress level? Have you ever seen anyone on this forum 'recover, whether through some form of treatment or lifestyle change, or coincidentally, from their symptoms without surgery?

Yes! I totally agree. My doctor called me while I was at work after she got my CT results. It was unbelievable to think that there was a name for what I had & possibly a cure for all my symptoms. I am scheduled for surgery on Jan. 20th for my left side. I am excited to start this final phase (hopefully) of this ordeal, but I am also nervous about the recovery. The more I read on here, the more I feel I know what to expect. So that helps. I don’t know what I would have done without this support group.

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Yes. I had first one last April and 2nd in early December. Im actually heading in today for my first chiro visit since last surgery. I had some acupuncture on Friday in both sides of neck & jaw without problem. I wasnt expecting much but on Saturday I did feel some changes and improvements in the nerves and tightness in neck. Ill be going back for more. It was a pleasant surprise. I have noticed since having the right out in December, I seem to have better rotation to the right now. Its pretty subtle but a change.

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Hi phillyeagle,

You asked some good questions & I can only give an opinion based on my experience on this forum.

I would say that many of our members have acquired ES after an injury such as whiplash or head trauma. There are a few who have bodies that mismanage their calcium levels & have parathyroid problems &/or hormone imbalance. Some have gotten it after a tonsillectomy while others seem to have a hereditary predisposition toward it. In a few cases it may be caused by excessive bruxism (jaw clenching) & there are those who have no known cause.

As far as non-surgical recovery goes, there is no particular type of therapy that seems to help for the long term. A very members have had symptoms sufficiently decreased by nerve pain meds so they felt they didn’t need surgery. I think things like lifestyle, posture & stress level definitely can make symptoms worse. We have noted that here repeatedly.For example, “living life in the fast lane”, sitting in a slumped position in front of a computer all day, a high stress level at work/home all contribute to making symptoms worse. They all raise the adrenaline level in our bodies & that raises inflammation which exacerbates symptoms. We have also known of members whose symptoms became less severe w/ diet change (i.e. starting on an anti-inflammatory diet), slowing down the pace of life & working on correcting posture, but no one has been cured by any of these efforts.

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