I have been reading a lot of your stories on here while searching for my symptoms online and trying to figure out what’s going on. I feel terrible for a lot of people with ES who seem to have a lot more severe symptoms than me, I can only imagine…
I will explain my story thus far and would appreciate anyone’s opinion on my situation so I know what might be the best path forward
Around 2.5/3 months ago I developed some sort of infection, tested negative for covid but it was definitely more severe than the regular flu. Coughing fits, night sweats etc for around 2 weeks. After that subsided, I was left with a constant niggling cough and just didn’t feel myself. After that most of the symptoms subsided within a month but several stayed:
A feeling that something sharp is stuck in my throat on the right side (could be described as a pin, tooth pick, fishbone)
A feeling of pressure on the right side of my neck, especially when speaking loudly
A bit of soreness/discomfort under the corner of the jawline although this is the most minor symptom
A clear palpable hard/sharp ‘string’ that starts from just to the left of the corner of my jaw (not the right side) and can be followed down almost to my hyoid bone. This isn’t actually that painful it just feels bizarre and it somehow feels like it is the origin of my symptoms
I pointed this out to both ENT’s and asked if this could be a calcified stylohyoid ligament, both (independently) immediately dismissed that idea as they said it is way too shallow to be the ligament but neither could explain what the sharp ‘string’ was. Both ENT’s were also aware of ES.
I have been to several ENT’s, had the camera down the throat, reflux medicine. Had a ultrasound of the neck which showed nothing of significance. I have also had an MRI which I am still awaiting the results.
I also went for a panoramic dental X ray as the ENT recommended this (I will post the picture once I am able to), I sent the image to a friend who is an oral surgeon to get his opinion without mentioning ES - He almost immediately replied to me saying he can see the calcification of the stylohyoid ligament and said this is called Eagle Syndrome, he mentioned that the processes look fairly normal in size but that there is calcification in the ligaments. He mentioned that he believes the ligament/process ‘should be bigger’ in a more serious cases and that surgery is only recommended in ‘extreme cases where it severely impacts quality of life’
My main concern now is how to go further, I do not feel my symptoms are as severe as many other stories I have read (I currently have no symptoms in the ear/eye or any severe headache/cognitive issues). Some fatigue and upper neck/back pain but I’ve had that for a long time as I work very long hours behind the computer. But the constant feeling of a sharp object in my throat and the constant soreness in the neck are still very uncomfortable.
Have there been people that have been able to relieve their symptoms and live with them? Or are they simply likely to get worse rather than better?
I have recently lost some weight (mostly muscle) and was wondering if maybe this change in my necks shape/thickness could have caused the calcified ligaments to move and put pressure in the wrong area. Maybe if I take up a different workout routine, I could shift them around? What about physiotherapy, working on moving the ligament around?
Thank you very much for reading and for any of your opinions in advance
Hi @Gtx! Welcome to our forum! You’ve asked some great questions so I’ll answer to the best of my ability.
First, your symptoms do sound like those experienced from ES. I disagree with the ENTS you saw as sometimes calcified ligaments &/or elongated styloids can be felt under the jaw - I had bilateral ES & could feel my left styloid/calcified ligament under my jaw in the area you’re describing for yourself. When I poked the hard “lump” I’d get a shooting pain into the area where my thyroid is. I initially thought it was a problem related to my thyroid but saw an ENT who listened to my symptoms (there were others besides pain at the front of my neck), felt the lump & immediately told me he thought it was ES. He sent me for a CT scan which confirmed I had it bilaterally. On a positive note, it’s great that you have doctors familiar with ES near you!
Your oral surgeon friend’s opinion from your pano x-ray is a valuable one as it confirms what you’re feeling & what you suspected.
ES surgery is major surgery & not to be taken lightly. It can take 6-12 months for nerves irritated by the styloids/calcified ligaments to completely heal, however, many people are able to go back to work, at least part time, starting a couple of weeks after surgery. Physical energy level is reduced for a month or two after surgery thus the need to start back to work gradually as stress & fatigue slow the rate of recovery. We recommend having surgery when the symptoms are severe enough that you can’t function normally from day to day i.e. you don’t need to be bedridden, but if symptoms are keeping you from living your life fully/working competently, then it’s time to consider surgery.
•There are people who have successfully reduced their symptoms for awhile by taking a nerve pain medication such as Gabapentin, Amitriptyline or Carbamazepine. These do have side effects the most common being drowsiness & fatigue. They can also take several weeks to become effective once you start on them.
•Another option is an ultrasound guided injection of lidocaine + cortisone into the tonsilar area in the throat. Some people get several months of pain relief from an injection, whereas others get shorter duration relief or no relief & occasionally this injection makes pain worse. It can only be done about 3x.
•Icing or applying heat to your neck in the painful area(s) can also be helpful. We recommend gel ice packs because they conform to the neck shape - 15 min. on & 45 min. off w/ a thin cloth between ice & skin. If ice doesn’t help, try heat.
•Over time, symptoms do tend to get worse. It may be because the styloids/ligaments calcify further or because they wear on the nerves more over time, but eventually, surgery most likely be necessary for symptoms relief.
•Posture correction can be helpful. With your long hours in front of the computer you likely have forward head posture (AKA Upper Crossed Syndrome). This causes loss of the lordotic curve in your neck, which puts a lot of strain on your shoulders & neck as they have to support your head in a position it wasn’t meant to be i.e. sticking out in front vs upright over your shoulders. There are YouTube videos with exercises that can help restore your neck curve & upper body posture. The following two thread by @vdm have lots of great information on this topic - My Favourite List of Research/Educational Resources List of my favourite resources on YouTube to learn anatomy
It’s more likely the terrible cough you had either fractured or shifted the calcified stylohyoid ligament on your more painful side than your weight loss being the culprit. However, it is possible that the change in the density of the soft tissue in your neck is also contributing as you suggested. It’s really impossible to know everything that comes into play with ES symptoms. What we do know is that once the calcification is removed, symptoms are often relieved or at least reduced to a more tolerable level.
I have upgraded your account so you can now post images. Please feel free to share your pano x-ray.
Your recommendation that having surgery when symptoms are severe enough that I cant function from day to day makes sense, as of now I am very much struggling to know where that line is because as you mentioned the surgery is not to be taken lightly. I’m wondering if the risk of surgery is worse than trying to live with the current symptoms, its difficult to weigh up. I’m in my mid thirties, I wonder if it is better to bite the bullet and go towards surgery or try to delay it as much as possible and see what I can do conservatively.
Have others had any positive results from prolotherapy?
Are there any risks to having a physio or massage therapist manipulate my neck and the string (calcified ligament)? I have steered clear of this until now because I wasn’t sure what it was
I have read some articles where manipulation of the surrounding muscles (sternocleidomastoid mainly) can have some potentially positive results:
'Soft tissue mobilization Tenderness and decreased mobility of the left sterno- cleidomastoid and bilateral posterior cervicothoracic paravertebral musculature were noted. A petrissage technique, applied perpendicular to the muscle fibers, was used to address the changes in soft tissue mobility. Of the areas where soft tissue mobilization was performed, the sternocleidomastoid appeared to have the most profound effect. By lifting the sternocleido- mastiod and bending laterally, the patient would report an immediate decrease in craniocervical symp- toms. After receiving this treatment over two sessions, the patient reported complete cessation of the sensa- tion of a lump in her throat and marked decrease in pain and numbness in the left mandibular area. I definitely think I have forward head posture as I spend’
I think you are right in saying I have forward head posture, I have always struggled with upper back pain. At the moment my upper back pain seems to be worse as I’m being very conscious of my posture and trying to keep my shoulders back and not lean my head forward, doing that actually worsens my back pain so I guess my neck was compensating for this all along…
Do you believe that getting an MRI of my upper back discs might be beneficial? I have never had any imaging of my back
I agree with @Isaiah_40_31 that your symptoms sound like ES , & that surgery isn’t without risks so this does need to be considered carefully. That said, the recovery might be a bit easier while you’re young, and also if nerves are being irritated by the styloids then the longer this continues it could potentially damage the nerve coating more…
Looking at your x-ray, I’d say that your styloids do look a bit longer than average- you wouldn’t normally be able to see much of them on an x-ray if they were average length. Unfortunately doctors don’t agree on the ‘average’ length, some say 1.5cms, others anything up to 4 cms, around 2.5 cms seems reasonable! The angle of the styloids is also a factor as this can cause symptoms even with short styloid processes, and yours look quite pointy at the ends, so they could be irritating nerves…
We’re not doctors on here, but I think it looks like your ligaments are calcified further down, nearer the hyoid end? (the ligaments run from the styloid process down to the hyoid bone, so can calcify anywhere along their length, calcification at the hyoid end is less common)
I put off surgery for a while- I was in pain, but nothing like as bad as some members experience, & I was worried about the risks with surgery. Later I had a prolapsed disc in my neck, and I think that affected the position of the styloids slightly, so I started getting some vascular symptoms & feeling pretty ill, so that decided it & I had surgery, which was very helpful.
The skill and experience of the surgeon is also something to think about; are any of the doctors you’ve seen able to do the surgery?
Re an MRI of your neck/ back, it would show any disc problems, but not the styloids or ligaments very well, I guess it could be useful to see if anything else is going on?
Some members have tried prolotherapy- you could use the search function to see past discussions; some have found it helpful temporarily, others found it worsened things. It’s not a cure, surgery is the only real cure…I would be wary of any sort of physiotherapy unless the practitioner is aware of ES, as it could make things worse. One of our members co-wrote a research paper with info for physios, here’s a link you could share if you were to see someone: Eagle’s syndrome, elongated styloid process and new evidence for pre-manipulative precautions for potential cervical arterial dysfunction - ScienceDirect
It is difficult to know when the “right time” is for surgery, but @Jules made a good point in that not waiting a long time to have surgery will spare your nerves further damage & may give a better long term outcome. Not only that, but calcification can increase over time & that can make the surgery more extensive besides causing worse symptoms. My symptoms were more like yours - not debilitating, but very uncomfortable & distracting. My symptoms were progressive & started w/ benign positional vertigo which came & went & then choking on food & fluids. After that came the pain in the front of my neck & finding of the lump under my jaw which felt striated i.e. it was textured not smooth. Beyond that I had many other symptoms in my face, skull, neck, shoulder, ears & mouth. I never had the feeling of something stuck in my throat though my styloids could be felt there.
Looking at your pano x-ray, I agree with Jules - you have bilateral elongated styloids w/ the right one being thick at the top but of greater note is your calcified stylohyoid ligament on that side which looks to me to be fairly extensive. I annotated your image so you can see what I see. The right s-h ligament disappears behind your jaw so I didn’t include what I think is the whole thing w/in the oval but I did add an arrow pointing to the section that looks to be behind your jaw in the imaging. This would explain why your right side symptoms are worse i.e. both elongated styloid & calcified s-h ligament.
The article you mentioned has some good information in it, but 1) you’d need to find someone as experienced w/ ES as the therapist in the article to insure the work on your neck would be done safely. 2) From our experience on this forum, it’s most likely that the woman mentioned didn’t have long-term pain relief (i.e. over years) & would eventually need surgery to truly resolve her symptoms.
The ENT echoed what you both have said for the most part, he said that surgery is recommended if it sufficiently interferes with quality of life. To my surprise he said the surgery is not particularly rare and he has seen it done over 20 times when working in Germany. He has contacted a colleague of his who is a maxillofacial surgeon to discuss my x ray and MRI and suggested a meeting all together next week to discuss the options.
He mentioned that in his opinion the surgery is always an option and not urgent, also that physical therapy is harmless and in my case could only improve the situation and not worsen it, so its worth trying this and any other non invasive methods in his opinion.
My upper back pain is not related to this at all according to the ENT but nonetheless I will try and work on my posture and back pain with a physio also and obtain some imaging of the upper back as its always caused me issues.
My plan is to contact a physiotherapist I have used in the past and explain my situation, send him the link provided by Jules and other information on ES and see if he is open to working with me in a safe way to specifically relax the sternocleidomastoid which might result in less pressure being put on this calcified part of the hyoid. But I will wait until I meet with the doctors again before doing anything.
I will post an update after meeting with the doctors next week or as soon as I have made any progress or find out new information. Thank you again for the support, I really appreciate it!
You have a good plan in place for moving forward, @Gtx. It sounds like you’ve really thought things through & that you’ve got good, knowledgeable doctors on your “team”. I hope if you try PT, that it does give you good results & reduce your pain.
I’m glad that the doctor you saw was helpful & agreed about the calcification…I hope that the meeting goes well, let us know how you get on & what you decide!
I met with 2 doctors this week to discuss my options, they mentioned that as far as they are concerned, there is no harm in giving it some time and trying conservative treatment (PT, posture correction) because I do not have symptoms such as dizziness when turning my head or any vascular sign.
The doctors were very helpful and kind, they explained that if I did not find relief and cant live with the symptoms, they can do the surgery preferably from the outside to remove the process and the ligament. I asked about risks to the nerves, they seemed confident that this is not a big risk and damage to the nerves is rare (although from reading on this forum, I know that may not be the case). They emphasised that I would have a scar on my neck, which is the least of my concern
Now that I have all the information and the option of surgery, I will begin doing PT once or twice a week for an hour focussed on the neck and work on my posture/upper back issues at the same time. I will also adjust my workout routine to what it was before I developed these symptoms.
I will post an update after some time to let you know how things are going.
I’m glad that your doctors are helpful, and are willing to do surgery for you if things don’t improve! Look forward to hearing how you’re getting on with the PT
I’m glad you have doctors in your country who are familiar with ES & are willing to help you if/when you decide surgery is the best option to stop your symptoms, @Gtx. If you do end up having surgery, & have good results, it would be great if you could share your doctor(s) name(s) w/ us so we can add him/them to our Doctors List.
I hope the PT & posture correction you’re doing now make a big difference & help you feel much better.
Just wanted to post a little update as I wanted to see how physio would progress over the months.
My situation is that I have the constant ‘fish bone’ sensation, sometimes it gets a bit worse and sometimes a bit better but its never not there. As well as the feeling of some swelling. I can clearly feel the calcified ligament all the way down if I turn my head to the side, like a toothpick.
Besides the above, I don’t have any other symptoms. I’m still doing physio once a week, focussing on dry needling the traps and massaging the sternocleidomastoid. It definitely helps me.
For myself I can clearly feel an immediate increase in intensity to the point I’m holding the side of my neck because it feels sore/swollen, when I don’t sleep well for a few days, use my voice a lot more than usual (after a late night where laughing a lot, for example) and when very tense/stressed.
There also seems to be a very clear link between tight trap muscles and my symptoms flaring up worse, physio helps with this.
For me the symptoms are currently something I can live with and the risks of surgery outweigh managing it this way at the moment.
I know many people have much more severe symptoms to which physio might not very useful but for me it has made things more manageable.
I will post updates every so often in case it is of use to anyone with similar symptoms
I’m glad that at the moment symptoms are manageable & the PT helps, that’s really good. You’re right that surgery’s not without risks so sensible to hold off if your ES symptoms aren’t so bad…
Thank you for sharing what’s working for you to help ease your symptoms @Gtx. It’s very helpful for our members who have less severe symptoms to read about therapies/practices that others in their position have found useful & helpful. Perhaps you won’t ever need surgery which would be the best case scenario!
