Eagle's, SCM, or both?

General
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Hi all,

I’m hoping someone (or multiple someone’s) can provide me with some insight about the source of my symptoms. Like many of you, I have been suffering the past few years with an array of symptoms.

Symptoms:
My chief complaint was a gnawing headache that seems to build “pressure” around my throat and at the back of my head. This pressure is worst after I wake in the morning, and any time I lay down for a while. I am perpetually accompanied by a dull ache at the back of my skull behind my ears. Occasionally these headaches seem to morph into what I assume are migraines. I now take migraine medication and the third type of headache no longer occurs.

I also suffer from sharp ear pain, a sore throat, and a sharper pain where the ear meets the throat (especially when I do chin tucks prescribed by my PT). I have ringing and ear fullness. And my jaw always kinda feels tight.

After about a year or a year and half, my collar bone, neck, and shoulders started to become very stiff and painful as well. Like many of you, my scans show a loss of the curvature of the neck and a (slight) forward head posture.

Eagle’s Diagnosis
Recently, I was diagnosed with elongated styloids measuring 32 and 34cm respectively. This was done on a CT scan without contrast - nothing fancy. I have seen a surgeon who thinks taking out my styloids would help. I have also just submitted the paperwork to get a second opinion with Dr. Samji in San Jose.

My question for group: Is this Eagles, SCM, or both?

While this all matches Eagle’s syndrome, I’m afraid that maybe I just poor posture and that my SCM muscles are the real culprit. I know that the dull, achy headache behind the ears is often the SCM. In fact, I can conduct a trigger point massage on parts of my SCM and trigger one of the types of headaches. But on the other hand, this seems to have some similarities with IJV compression. My other theory is that it’s Eagle’s that is exacerbating the SCM or accessory nerves? which is why maybe the collarbone and sternum pain started later?

I’m mostly worries to get surgery and then find out that it was a pesky SCM the whole time. Conversely, I’m worried that I can do all the massaging, PTing, and dry needling I want, but without removing my styloids, it will all be for naught.

Any insights would be appreciated - especially those who had similar experiences - and especially especially those who had similar experiences and then went ahead with some sort of treatment that solved the issue.

Thanks for taking the time,

Robot Eagle

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Hi @RobotEagle - Welcome to our forum.

The symptoms you listed are all pretty common w/ ES so I’d say that since you have elongated styloids, even though they’re not hugely long, they’re probably the source of your symptoms. We know from experience here that other physical features (thickness, curve, angle of growth, how pointed or twisted they are, etc) of styloids besides length can play into the types & intensity of symptoms.

I’m uncertain from what you said whether you have vascular ES or not. It is possible for the trigeminal nerve to cause migraines though your mention of headaches & pressure at the back of your head is a bit concerning that you may have some internal jugular vein compression. Also the fact that you get worse pressure in your head lying down points to IJV compression. Sleeping w/ your head elevated at night or when resting lying down can help relieve that symptom to some extent. Icing your neck can also help. Some of our members have used lidocaine patches on their necks to help relieve nerve pain. There are OTC lidocaine patches but stronger ones are available by Rx.

Knowing whether or not you have vascular compression is important as it will better determine who you should see for surgery as only a few of the surgeons on our list do IJV decompression surgeries. You’d need a CTA/V (iodine based contrast is used for these) with your head in the position that makes your symptoms worse (if there is one). Occipital pain (at the back of your head) can be from the occipital nerve, but it doesn’t usually cause the pressure sensation, just pain.

Dr. Samji does not do surgery for vascular ES so it would be a good idea to get a follow-up CT to determine if you will need to see one of the more specialized doctors on our list before you spend the money to get an opinion from him. Dr. Damrose at Stanford Hospital in Palo Alto, CA, would probably be closest to you if you do find you have vascular compression.

Please stop doing the chin tucks. They aren’t a good idea with elongated styloids & especially w/ possible vascular compression. Perhaps after your styloids are shortened you can try them again.

Sharp ear pain can come from the trigeminal or facial nerves, sore throat can come from the vagus & glossopharyngeal nerves, & the pain where your hear meets your throat would be glossopharyngeal nerve. Because of the many nerves ES can effect, jaw tightness can be a protective mechanism on your body’s part as it tries to limit movement that is irritating the nerves.

These are symptoms of an irritated spinal accessory nerve & are very common w/ ES. The SCM also can be quite irritated & even become swollen due to SAN irritation. The SCM itself won’t cause the collar bone, neck & shoulder pain.

Poor posture may be contributing to making your symptoms worse, but I can nearly guarantee they aren’t the cause. Your styloids are. Your SCMs are also victims of your styloids as I noted above.

There really is no therapy or other treatment besides taking nerve pain medications that will help your symptoms go away as completely as possible except for surgery to shorten your styloids. That said, we have had members reduce their symptoms by postural correction, & for some, taking nerve pain meds such as Gabapentin, Amitriptyline or Carbamazepine helped, but the meds have side effects that some people can’t tolerate, plus they can take several weeks to build up in the body before starting to relieve nerve pain.

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I am in the same position with the symptoms and the styloids being a similar length (3.2 / 3.5 for me) and I have the same question because my symptoms get worse/better although there is always a symptom there (usually tightness around the throat).

I find that if I do strength training of my traps or chest things get a lot worse. I can’t really do chin tucks either because that makes it worse. I do find that stroking my SCM helps get rid of some of the tightness but I can’t seem to stop it tensing in the first place.

One of my biggest issues is that I have got is that my eyes don’t line up (I definitely have BVD - binocular vision dysfunction - and all of the symptoms) and the ES symptoms get a lot worse when I wear my glasses and a lot better when I wear my contact lenses, to the point where I am almost 100% better. I have run out of contact lenses until the 17th April and I am currently wearing my glasses and it is awful, I can’t breathe, muscles are tight all over. However, the glasses are the correct prescription. I have a high prescription as well (-8.5 right, -7.25 left), I don’t know if this contributes. I don’t know why suddenly my eyes don’t line up but that could be vascular related but might also not be, so like you said I don’t want to have the surgery needlessly only to find out it’s something completely different.

I also find looking at screens makes all of this ALOT worse, to the point where I end up feeling a bit “giddy” - I can’t really describe this but I end up having to look away and can’t sit still. I’m aware that this sort of eye issue (and the BVD) could be AAI (atlantoaxial instability) although I paid for upright scans at Medserena in London and there was no evidence of this.

I also push my lower jaw and tongue forward which my dentist called “posturing” but offered no advice other than try not to do it. I find I do this a lot, possibly due to instability somewhere? I find that my tongue is never relaxed in my mouth, like there’s no proper place for it, it feels too big and I often push it forwards and then sort of bite on the back sides of it, I think I’m using it as a splint.

I’ve got another appointment with ENT scheduled (16 week wait) and a referral in to speech and language therapy. Not sure where else to go because everyone I’ve seen thinks I’m completely mad and so far I’ve only had a diagnosis of somatoform disorder and anxiety. :worried:

Not sure if any of that helps..?

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Isaiah,

Thank you for your very helpful information. I think I’m going to check out Dr. Damrose in addition to Dr. Hepworth (I’m actually based in Seattle, so they are both relatively the same distance for me).

I am very much leaning toward (maybe even excited about) the possibility of surgery to remove the styloids. I just want to be as certain as possible the styloids are the problem before settling on surgery. During this process, doctors found a chair malformation and at least one surgeon recommended a craniotomy. But after seeing a specialist, we are pretty sure the mild Chiari is not causing my symptoms. So I’m just trying to avoid another situation like that.

Thanks again for your advice and very specific recommendations. It’s supremely helpful.

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SkatKat,

You seem to be in a similar position: trying to figure out which is the chicken and which is the egg.

While I don’t know that either of us will get the specific answers we are looking for until we do more complete work-ups with specialized ENTs, I do find it helpful (and indeed comforting) to read about others who are working through the same process.

To the extent either of us finds the answers to our question, we should report back. The only downside to support communities like this one, is that often people who find a solution no longer have a need to seek support (which is a great reason!). But I hope to try to be a little more like @Isaiah_40_31 and report back even years after a resolution occurs.

Keep at it.

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@RobotEagle - We sure love it when members from the past give us updates which are so often very positive. It’s difficult to encourage our current members when so much of what they read from the recent posts is people still struggling so I thank you for your intention to stick around for a while & give us updates.

I’m glad you have a plan but want to let you know that both Dr. Hepworth & Dr. Damrose are booking a fair distance out so you’ll need to be patient. It’s best to email Dr. Hepworth’s office for a timely reply (info@denversinuscare.com). Leaving phone messages often results in you leaving more phone messages (in spite of what their vm message says) trying to get a call back to get an appointment scheduled.

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I think that @Isaiah_40_31 has covered everything I can think of! Unfortunately the question of whether surgery will help is something that lots of us have considered, & have to weigh up the potential risks with the benefits that we hope to get, getting as much info beforehand to help make this decision is a good idea, so finding out whether there is IJV compression is a good idea. Lots of members have had SCM issues, so surgery isn’t always a quick fix; if you do opt for surgery it may be that you’ll have to do PT etc to try and help with that later. There have been a few discussions about SCM symptoms, so you could search the past discussions to see if there’s any useful info…
Glad that you’re finding the site helpful & are wanting to stick around to help others too :grinning_face:

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I was diagnosed with bilateral elongated styloids 5 cm, bilateral IJV compression caused by C1 and bilateral IJV compression in the lower part of the neck caused by SCM spasm.
I also have these headaches that wake me up during sleep. The only medicine for such pain is a muscle relaxant (Diazepam) that I have to take every night.
I also take Pregabalin for a long time, to eliminate my pain from the occipital nerves.
It helps to warm up the head and neck, so they must always be covered even while I sleep.
No exercises are out of the question for the neck area, but I do a lot of exercises that improve spinal posture, provided that the exercises do not put strain on the neck to keep the head in a horizontal position.
Every four days I go swimming in a warm pool where I also use hydromassage devices.
I believe that all this helps me cope with these problems and keeps me able to work.

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@tesla001 - Thank you for sharing what is helping keep your symptoms at a level that allows you to function pretty well. I’m also glad that you have found ways to help yourself feel ok with ES & IJV compression.

I don’t know how much you keep up w/ the discussions on this forum, but there is now a doctor in Türkiye who is doing styloidectomies with IJV decompressions. If you are able to travel to Türkiye, he would be able to help you. He will do initial consults by telephone. Here is his contact information:
•Dr. Kamran Aghayev - https://kamranaghayev.com

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I will give you the benefit of what is working for me with a physical therapist who teaches PT.

We have gone through a variety of things to see what will work NOT including typical stuff that they do like chin tucks, etc.

He has tried a variety of techniques involving my mouth that are pure torture. There is one where he sticks his finger all the way back into my upper jaw. My eyes roll back in my head it hurts so bad. Also various massaging around my mouth/jaw and a doo dad device along jaw line. These sessions tend to make me feel better after i recover from the torture.

An oral surgeon said I had myofascial issues.
PT works on my trap and SCM muscles etc. This also makes me feel better. They are very tight.
He goes along my spine doing trigger point stuff. Pulls my shoulder back stretching it.

There are some things he has tried that I can’t tolerate .

The idea is peeling back the onion. A lot of contributory causes. One of my big tells if something works is if the pain in my jaw lessens. What started all of this diagnosis was I thought I had a rotten molar that needed to be pulled. Dentist said No, I had Eagle Syndrome.

So if something he does lessens that pain I feel like it is a success.

I would say definitely work on posture. Relax shoulders down. The tens unit he uses on me helps with heat.

I got a theracane and try to replicate some of the areas he presses.

If you have lived with this for a while your body has tried to compensate for the issue. My styloid is worse on the right and the right side is where I feel the pain. But when he messes around with the left side it is almost as tight.

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Thanks @Isaiah_40_31! I contacted Dr. Kamran, who offered the option of performing bilateral styloidectomy along with C1 shaving. At my request, he also made an offer to perform the operations in two phases - first on one side, then on the other.

However, due to numerous issues with my spine, my current priority is to maintain my exercise and swimming routine, as I fear that stopping could lead to a setback that would be difficult to recover from.

For now, my main focus is addressing the spinal problems. I have an upcoming appointment with a neurologist to adjust my medication therapy, and I also plan to undergo MRI scans of the thoracic and lumbar spine.

Based on those results, I will evaluate the situation and make decisions regarding further treatments.

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I’ll definitely report back, even if it isn’t Eagles, although on paper I do have Eagles. I saw Dr Jonathan Hughes in London and despite the size of the styloids being approx 1cm too big and some discontinuous calcification of the ligament both sides, he wasn’t convinced that it was causing all of my symptoms which are very random. However, he did say I could have the surgery if I wanted, but this isn’t very helpful because I can’t afford to pay for it myself so I kind of need a proper diagnosis so that I can get it done through my insurance. I have had lots of other tests - CCI/AAI scans, TMJ, brain scan to rule out tumors/MS/Parkinsons, nerve tests to rule out ALS, MRI to rule out neck cancer (I have one large lymph node under my chin on the right), I’ve had my wisdom teeth out, blood tests to rule out autoimmune disorders, b12 check (low), iron check (low but not anaemic).

I’m currently waiting for NHS ENT and SALT and at some point when I’ve saved enough money I plan to see a squint specialist about the BVD and also get implantable contact lenses (£8k in the Uk so a long way off this). More recently I’ve had stomach issues and I’m now I’m thinking is it something like stomach cancer…although I’ve had it for the last 3 years so probably not. I don’t want to sound like a hypochondriac, I just know something is wrong and I really want to get to the bottom of it. I don’t really have any support from anyone because they all think I was completely mad when it all started at the end of 2021 and I’ve done a really good job of hiding all my symptoms and tests since then so they all think it was just a mental health blip and I’m better now.

Hope you get some answers soon, I’ll definitely post back on here with my findings.

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Sending you a hug @Skatkat , have you read up about the digestive issues which can be caused by styloid compression of the vagus nerve? :hugs:

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Yes, the symptoms could be related to the vagus nerve too. I think that’s probably more likely than cancer to be honest, it’s just that I was watching TV a couple of weeks ago and someone who had stomach cancer was on there and she described the symptoms and they were similar to what I have. I think I’d probably be on my deathbed now though if it was stomach cancer for the last 3 years, so it’s probably not that.

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It sounds like you’ve been thorough in investigating the possible causes of your symptoms, @Skatkat. I’m sorry Mr. Hughes wasn’t more encouraging regarding ES being the potential cause. It sure sounds like you have enough bilateral calcification in your neck that it could be. Unfortunately, even some of the most experienced ES doctors tend to minimize the type & intensity of symptoms ES can cause & dismiss it as the probably culprit.

If nothing else shows up in your future testing, & because you do have an ES diagnosis, it would be worthwhile pushing for ES as the probable symptoms cause so your insurance will pay for surgery.

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I will say that within the same timeframe as my other symptoms, I started to have some unexplained pernicious stomach symptoms. I’m suspicious of a vagus nerve issue as well. I’ve had my stomach scoped and they didn’t find anything obvious, despite very specific and enduring stomach problems.

But like you, I sometimes see people on television, news stories, or the internet, and then my mind races with all of the horrendous possibilities.

For me though, the one ailment that still matches all of my symptoms is ES.

Unless Dr Samji or Dr. Hepworth suggest otherwise, I will very likely undergo the bilateral styloid removal surgery with the hopes that this is the root cause and that with some patience and PT, the rest will follow.

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Thanks for sharing. I’ll look into some of those alleviating activities. Glad you are swimming. I use running for the same purpose. (weirdly, my symptoms almost always alleviate when I perform moderate aerobic activity).

Keep it up.

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