New to the Forum, Curious about experiences

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Hello all,

I’ve been checking out this forum for a while now trying to learn more about this condition.

My symptoms began early 2023, but now that I have learned more about this, I suspect there may have been signs even earlier than that. My initial noticeable onset of symptoms came on somewhat randomly and pretty aggressively. It began with:

  • Tight jaw muscles
  • Sore throat, almost like strep, although all tests of strep came back negative
  • Gum pain
  • Tooth pain
  • Burning tongue at the tip
  • The all too familiar “choking” feeling that most I’ve read feel
  • Ringing in my right ear

I was blood tested for a multitude of things that all came back “normal” and it wasn’t until I had read about ES that I began to suspect this condition. Throughout this time, my symptoms began to subside except for the choking feeling, almost a 3 month period at that point. I read that the Styloid Process should be palpable where the tonsils are. Now I had my tonsils removed almost a decade ago, however, when I reached back into the pit where they were located, I felt a hard bony “spike” protruding into my mouth space. This warranted me to ask for a CT Scan and I received one with contrast shown below.

View from front:

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Left:

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Right:

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The radiologist did not point this out, so I had grabbed the CT file and looked at it myself as I was surprised to hear it came back negative. I measure my Styloids to be more than 4cm on both sides. I got a referral to an ENT after this and was scoped and checked for other things, mainly GERD, to come to a diagnosis by exclusion. After a round of omeprazole and no improvement, my ENT confirmed my suspicion, however admitted he did not have the ability nor comfortability to perform an operation to solve this, but to his credit, I appreciated the honesty and the recommendation to a separate ENT.

As time passed, my symptoms began to not only come back, but expand as well. I’ve experienced consistently:

  • That same “choking” feeling
  • Soreness around my tonsillar area
  • External tightness behind my jaw and under my chin
  • An almost bruised kind of feeling on the tip of my chin
  • Ringing in my right ear

And I’ve experienced on-and-off:

  • My tongue, more towards the back, feeling like it’s being shocked
  • Burning on the tip of my tongue
  • Pain in my teeth
  • Numbness in my face
  • “Headache” that travels from behind my jaw to above my eye, both sides

It has been over a year since I’ve first started actively dealing with this. I have seen another ENT who seems to be skeptical that this ES and is pointing at my muscle tightness as being the primary cause I’m having symptoms due to nerve compression, although with several weeks of physical therapy and a noticeable decrease in muscle tightness, I have not experienced an improvement in my symptoms.

So now I’m a bit at a loss. It seems everyone’s experience with this anomaly is pretty on track with my own, so I’m skeptical that what I’m currently dealing with is purely muscular in nature.

Thoughts?

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Your styloids do look longer than average, there’s a tiny gap so it could well be that the stylo-hyoid ligament has calcified at the end of the styloid process; either way it’s enough to potentially cause your symptoms.
I’d suggest seeing your PCP and asking to try a nerve pain medication- like Gabapentin, Lyrica, Amitriptyline (there’s more info in the Newbies Guide Section) . The Trigeminal nerve and Facial nerve are often irritated by the styloids, @Isaiah_40_31 suggests the two minute neuroscience videos on YouTube which show the nerves, here’s a link:
2-Minute Neuroscience: Trigeminal Nerve (Cranial Nerve V) (youtube.com)
Some members have found muscle relaxants can help, and also lidocaine patches might be helpful. PT can help, but you’ve obviously tried that , it’s not a cure though, removing the styloids and any calcified ligaments is the only real cure.
So probably your best bet would be to get a referral to one of the doctors on our list, or otherwise send your CT to one of the doctors who do telehealth consults, like Dr Cognetti in PA.
(You can use the search function to look up any doctors to see which other members have seen them if you want.)

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Welcome to our forum, @MildlyAnnoyed. I like your screen name! It’s not uncommon for ES symptoms to come & go & get worse over time so what you’ve experienced in those arenas also suggests that what you’re dealing with is ES.

Tight muscles can certainly exacerbate ES symptoms, & conversely, ES symptoms can cause muscles to tighten up. It’s a “Which came first, the chicken or the egg?” scenario.

In addition to obvious elongation, I also noticed that your styloids & the sections of calcified ligament are pretty thick which can also contribute to symptoms, so I must disagree w/ the second ENT you saw as ES seems to be the proper diagnosis based on your CT images & the symptoms you have.

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Thank you both, @Jules and @Isaiah_40_31, for the response.

I was somewhat surprised to hear the skepticism from my second opinion, however I am trying to follow through with his recommendations to continue building a case of exclusion. I sure am mildly annoyed at the pain or inconvenience these symptoms present to me, but the persistence of them sure do make my days far less enjoyable. I can tough it out though, for now. @Jules, I’ve looked through the list a couple times, however, currently I’m praying to find someone more local to myself to get this remedied, but in lieu of that it’ll be a nice drive for myself and my wife to get me to a knowledgeable expert.

I’m attempting to have my PCP order another CT scan. The thought process being, if my symptoms have gotten worse, there must’ve been some type of change in where these “things” are, right? Although, I know nerve pain is a fickle thing and it could just be an exacerbation brought on by my day-to-day life.

Being young, relatively speaking of course, I prefer to avoid medication as, in my mind, that seems to me more of a treatment rather than a solution. My second ENT did suggest that Gabapentin would be great for me for any “flair ups,” however, knowing there’s a medical anomaly growing from my skull, I would imagine this isn’t just coincidence that the affected muscles that are affected are tight “just because.” You said it best, @Isaiah_40_31, chicken or the egg. I can’t for the life of me think of a “smoking gun” so to speak.

I suppose my questions are in regards to what I plan to do next, which starts with garnering another CT. From what everyone has seen/experienced here, what are the odds that there is additional growth/calcification to my Styloids/Stylohyoid over the year? The main reason I ask this is because my choice of living an “active lifestyle” mainly includes being involved in the wrestling community. I wrestled for 20-some odd years, and, reading the supposed causes of ES, trauma from tonsillectomy or elsewhere to the neck can cause this growth and consequently the symptoms I experience.

I’ve since taken a break from extraneous physical contact, since I’ve noticed some type of pattern between that and exacerbation of pain. I’ve had syncope-like episodes after a tough workout, which has never happened to me before. This leads me to believe I have some type of vascular compression. Loss of vision, increased heart rate and respiration, but after 10-15 seconds, I feel fine. In my 3D CT, I can see that my left Styloid is at the very least making contact with my artery (shown below). Obviously not great, but it’s comforting at least having a visual of what’s potentially happening to me.

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I’ve tolerated several surgeries over the past decade just fine and I am definitely not getting any younger, so the wait between now and a potential “then” absolutely kills me.

I have a Speech Therapy session for more myofascial release coming up soon as prescribed from my most recent ENT, so keeping an open mind, I’ll see how I feel after that, but again, I am skeptical considering the work my Physical Therapist and myself have put in several weeks prior.

Once again, thanks for the response. I’ll keep this thread updated as time goes on. This forum thus far has helped me tremendously to understand this particular condition and this is at the very least a small way that I can give back to those who’ve aided me.

If anyone has any other opinions, recommendations, findings, or ideas, I’m all ears (or eyes I suppose in this format).

Thank you!

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A CT with contrast would be a good idea, if there’s any head position which brings on the syncope episodes then CTs can be done dynamically with your head in that position to see if it does bring the styloid into more contact with the carotid artery. If it’s more the exercise which brings on these episodes, then that could possibly be caused by vagus nerve compression, @Isaiah_40_31 had blood pressure issues during exercise so hopefully she’ll elaborate on that…
Definitely a good idea to give up on the wrestling for now, and probably if you do any weights at the gym it might be a good idea to leave that as well…you’re right that neck trauma can cause ES, it could be that the wrestling has made the symptoms worse, or it could be that yours have grown longer with time, or (although you are on the younger side compared to most members!) it could be that with aging there’s been slight shifts in the connective tissue in your neck which could’ve altered the angle of the styloids a fraction, enough to then irritate different nerves.

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These symptoms do sound like the result of your styloid contacting your ICA (internal carotid artery) during exercise. @Jules is correct, I had similar symptoms when I worked w/ a trainer at my gym after being diagnosed w/ ES. The activity that brought vascular symptoms up for me fast & furiously was doing rope slamming. That places huge demands on the neck muscles, & I would get light headed & feel like I was going to pass out, my heart would race, & I couldn’t catch my breath. My blood pressure would also plummet during these episodes which would explain the overly accelerated heart rate. My episodes lasted several minutes once they started but did go away if I stopped the activity that brought them on. Those symptoms went away when my right styloid was removed. My left was removed second, & as it turns out, was compressing my internal jugular vein which is a problem that still needs resolution, though the bulk of my symptoms from the left styloid did disappear once it was shortened.

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Hey all,

As an update, I saw the Speech Therapist (ST). As much as I appreciate the efforts that this person gave, myself and my wife left feeling a little more than skeptical considering the treatment I’ve been continuously going through the past several weeks with my Physical Therapist. However, I’ll give the recommended treatment from the ST a try, even if only to exclude pure musculature as a factor. It was as I suspected: a combination of myofascial release and exercises, which all things considered, isn’t really anything new or pivotal in comparison to previous treatment.

In the mean time, I’ll be pushing for a more updated CT. Also, the first ENT I had presented to, although he couldn’t necessarily treat me, did recommend a separate Head-and-Neck Surgeon who has apparently done this before. I am going to work on a referral to him and see where that takes me.

As I go through yet another treatment to add to the ever growing list of “things tried,” I’m curious: how did everyone feel on Gabapentin? I wonder if I could use this as not necessarily a treatment, but a diagnostic. I’ve read on this same forum that Gabapentin, after modulating dosage and time, has subsided symptoms, especially the feeling of choking. Considering that my tissues look perfectly healthy and that I’m not suspect of having GERD, that would leave the initial thought, and I’m thinking the correct one, is that the choking feeling is nothing more than a nerve issue. Logically speaking, if it is truly a nerve issue, in addition to many of the other seemingly random symptoms I experience, and if Gabapentin primarily targets nerve irritation, then this would seem like a moment of coming “full-circle” on an ES diagnosis, would it not (Other than the obvious anomaly growing from the base of my melon)?

It’s tough to rationalize the unpatterned series of symptoms, excluding of course absolutely taxing myself with a tough work-out, to exacerbate them. In either case, I’ll still continue to attend Physical Therapy as it has taken my potential terrible days down to just being bad ones. Obviously having no bad days is preferred, but I’ll take a win when I can.

Also, somewhat related question. How was the recovery from surgery? I’m about to be a dad here in a couple months and I want to be as helpful as I can be as my wife recovers from giving birth, and talking with my wife, she would rather see me “fixed” than frustrated day in and day out. I’ve had surgeries related to athletic injuries that have left me with the ability to only use my non-dominant arm during recovery. I can’t imagine that a Styloidectomy would leave me out for the count performing simple tasks around the house and with baby. As awful as my tonsillectomy was, I was still able to function, at least when I wasn’t exhausted from being on opioids. Those are really the only comparisons I have, so I’m hoping that I can tough it out in the case I am able to go under the knife. Half joking, I don’t want to leave my wife with two “babies” to take care of while she potentially struggles to care for herself.

As always, thank you!

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@MildlyAnnoyed -

You’re an awesome husband & have a great attitude about this. Preparing for your first child is SUPER EXCITING & being a parent of a new baby is SUPER EXHAUSTING!!

One of the more difficult parts of early post op recovery is the fatigue that surgery often leaves people with. Your pain will be at it’s worst in the first week post op & will begin subsiding going forward from there. Fatigue can last a month or two, but some people have no problem with it. I recall not being allowed to lift anything over 5 or 10 lbs for a couple of weeks post op & then being told to ease into lifting heavier objects over the course of the next couple of months since lifting involves neck nerves & muscles which need time to recover w/o being further aggravated. Recovery also tends to be a 3 steps forward, 2 steps back process w/ good days often followed by less good days, but the good news is, the good days eventually win. By 6-8 weeks post op, you will likely be feeling pretty good.

These are good plans for moving forward. I wouldn’t expect ST to help you a whole lot since your symptoms are more nerve than muscle related though your muscular response is because of nerve irritation so, as you noted, maybe you’ll get some bit of relief from following through.

And now you know why doctors have such a hard time diagnosing ES unless they’ve seen enough cases to recognize that the “unpatterened series of symptoms” often goes w/ elongated styloids.

I haven’t taken Gabapentin but some of our members swear by it & others couldn’t deal w/ the side effects so didn’t take it long enough for it to be helpful. One side effect can be fatigue/sleepiness so it’s recommended to take it at night before bed, but in some cases, it’s Rxed as a twice a day medication so just taking at night isn’t an option. Amitriptyline is another popular nerve pain med that has been very helpful for a number of our members including @Jules, so she can share her experience.

You’re correct that the strangulation feeling is based in nerve irritation rather than your throat actually trying to close up thus nerve pain meds can help relieve that symptom, and yes, think your “circular logic” makes sense. If nerve pain meds help reduce your symptoms that would be a good indicator that they’re nerve-based.

You’ve done a really good job of thinking things through regarding your symptoms, PT, possibly taking a nerve pain medication, upcoming parenting, & deciding what your next steps should be. I hope the Head & Neck surgeon is helpful for you if you see him as it would be nice for you to be able to have surgery closer to home. There’s also Dr. Schindler whom you’re planning to see. I hope he’s still doing ES surgery & is positively responsive to your need for it if you see him. It’s best to have a couple of options when deciding on a surgeon.

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Hi and welcome. Sorry you’re here, but you’ve also found the right place with some great support and knowledge.

I’m still relatively new too, your symptoms sound a lot like mine. They’ve come and gone and reached a severity this year along with visual snow that I’ve finally gotten diagnosed. I have surgery on Monday with Dr. Hackman.

I was just recently prescribed a very low dose of Gabapentin, and I didn’t realize just how flexed my facial muscles really were until I took it. I’ve noticed my facial changes over the years and extra flexion on wrinkles forming over the left side. At first, I thought it was how I was sleeping but I was beginning to suspect it was at least related to the nerve pain in my face. I took Gabapentin to fall back to sleep one early morning and when I got up three hours later I noticed my face was relaxed on both sides. Gabapentin seems to be helping decrease nerve-related facial symptoms.

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Gabapentin doesn’t help everyone, so it doesn’t mean you don’t have ES if it doesn’t work for you … but might be worth a try to help with your symptoms. It can take a couple of weeks to build up enough in your system to help, as all those sort of medications do. As @Isaiah_40_31 says, I take Amitriptyline for nerve pain & I’ve found it really helps. It helps me sleep too so has been useful for me for that, but your wife might not appreciate you sleeping soundly if she’s up with your new baby!
Congratulations for you both expecting your first child! Re recovery, as @Isaiah_40_31 says, lifting is not good after surgery, so something to bear in mind with the carrying car seats/ getting a pram in & out the car…if your wife were to need an emergency C-section you could both be out of action! And I found driving too difficult for a few weeks after my first surgery as I couldn’t turn my head properly, so that’s something else to consider…Ironing, sweeping & hoovering weren’t great the first couple of weeks either…It can really set your healing back & can cause lots of extra nerve pain if you do overdo things, but it’s lovely that you’re being so considerate!

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If I were you, I would look into what appears to be compression of the internal jugular vein on the left side. A venous outflow obstruction can wreak all kinds of havoc. I’m looking at one of your images, and your jugular vein appears to be pretty compressed, and very flat.

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Also, I’ve created a series of short videos on YouTube, describing what I went through and providing others with guidance on how to talk to doctors how to look at imaging, etc. perhaps you’ll find it useful.

Lastly, don’t fall into the trap of getting hung up on how long the styloid’s are. Many people have elongated styloid’s and never have any issues or problems. Elongated styloids themselves do not equal eagle syndrome, or issues…. they may indeed require a surgical fix, but there is usually more going on than just long styloids, that is my point.

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Thx @Barrootz - Great observation!! I saw that flattened IJV in @MildlyAnnoyed’s images, & for some reason it didn’t “click” as a problem.

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It takes a village :+1::heart: I am familiar with the flattened IJV because of what I went through. I’m happy to pay it forward, as it took me over 5 years to be properly diagnosed, and I’d hate for anyone else to have to suffer that long.

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Thanks for the input everyone!

@Barrootz, and here I am thinking this was something of normal variation as I was more focused on the areas with direct contact.

I’m still working on getting another scan done in addition to getting a third, and hopefully final, opinion. Sadly the game of human medicine is one of “hurry up and wait.”

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It took me 6 years to be properly diagnosed, and the field of internal jugular vein compression is one that not a lot of doctors, surgeons, and radiologists are even aware of.

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I was reading and watching your youtube videos - which was last month. How are you doing now?

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The decompression surgery was a huge success! I am so lucky to have found a doctor that really understands that part of the anatomy. I’m hearing too many stories about people just having styloid removed and not getting any better. I’ve put together a little website to try to help people.
If you want to check it out and give me feedback I’d really appreciate it.

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I like your website … I guess I would wonder if you should put more about Eagle Syndrome - like the Jugular compression - wasn’t that as a result of Eagle Syndrome?

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Not for me. I didn’t have Eagle Syndrome. I had a venous outflow obstruction. Mine was primarily caused by a piece of an artery and the transverse process. The styloid removal was incidental.

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Okay! Well then no, you shouldn’t. I have just started quest of treatment.

Blessings,
Christy

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