Hey, new here.
I have pain in my neck and upper traps, radiating to my arms alongside nerve pain in my fingers. Anyone here experienced upper trap muscle knots, almost like trigger points? I am confused because knots are not supposed to be formed with ES right? Please enlighten me. Thank you.
I think it’s that ES is so painful, that you get tense & often compensate by changing your posture, which in turn causes tense muscles, which can then trap nerves & cause more pain…a vicious circle! The styloids can also compress the accessory nerve which goes to the trapezium muscles, arms, shoulders, so this could be causing pain too?
Yeah, I though so too. Pain is one thing, but what does not make sense are the muscle knots. I even get sore from wearing a bra!
I think most of us have some issues with the muscles in the neck & shoulders, but alot of us have had other neck problems too, whiplash injury, CCI etc.
I dont have any whiplash injury or any accidents that can lead to it. But, my C pine has gone straight, even worse, going the opposite way. All the doctors here just want me to have muscle relaxants.
Actually, muscle relaxants have helped some our members to be less uncomfortable. They’re best taken at night to help you sleep & because they can make you feel drowsy during the day. They won’t be a cure, but can make the time until you find a surgeon more comfortable for you.
As @Jules said, the pain from ES (in your case probably caused by the accessory nerve) can cause muscles to tense up. When a muscle stays tense for awhile w/o being able to relax, knots form. Also, other muscles will try to take over to perform the work the tense muscles can no longer do, so more muscles can get tired & sore because they’re trying to do tasks they weren’t meant to do. It is a vicious cycle. Finding a doctor who can remove your styloids & take the pressure off your accessory nerve will be helpful.
I have taken muscle relaxants for 3 weeks. While the knots went away, the soreness remained and I can barely carry a bag without dying.
Everything about the accessory nerve makes sense but I have seen many say that the styloids elongate to stabilize the c spine which makes me wonder if removing them will cause more harm than good. Everything is very contradictory. Doctors here literally will not address that styloids can be problem and just want me to do PT for my neck.
do you think the length of the styloids matter in terms of symptoms and muscles being affected. MAy I ask how are you doing post op and when did you have it?
Hey Jebin,
My name is Merl from the Modsupport Team here on Ben’s Friends.
You’ve been given some really good advice here by both @Jules and @Isaiah_40_31
Many/most dr’s will try to avoid surgery if they can, even if there is an obvious issue. I too have been put through all of the ‘alternative options’ and although my situation is not Eagles related (I have a brain tumour) I’ve been sent down many of the same routes as it sounds you are being directed.
Here’s my advice: Follow through with the medicos advice. But document EVERYTHING.
If they want to give you a magic potion (medication), trial them. If they have a treatment regime, trial it. Exhaust every option they suggest, eliminate them all, even if the suggestion sounds way off course, trial it. The very minute you discount or negate a medically given theory, they can turn it around and label it as ‘Not following medical advice’ or label you as a ‘Non-compliant patient’. These are both ‘labels’ I’ve been given because I question Drs and many don’t like being questioned. I’ve had some nasty experiences with medications and treatments, so I question everything.
What I have found is that that one theory/idea you reject can become that ‘out’ that the medicos often need when every other theory has proven negative. “ohh, but you haven’t tried ‘X’ and ‘X’ might just work for you…”. My ‘X’ was Botox. To me Botox was for cosmetic purposes and it would take lots more than Botox to fix me cosmetically 
, so I kept saying ‘No’. He gave me the ‘It’s been a miracle cure for others…’ type line ‘…and it could be your key.’ So, I had the treatment of 50ish shots every 3 months, after 9mths I stopped it. It wasn’t my key. But the neurologist could no longer point at Botox as a treatment I rejected.
I’ve trialled every suggestion made: “It could be your eyes…” …I now wear glasses.
It could be muscle tension… …I trialled Botox. Bought a hydrotherapy jacuzzi, trialled massage, reflexology, acupuncture, manipulative physio
It could all be stress related… …took relaxation classes ie mind, body, soul. Saw a Counceller/psych. Attended a pain clinic.
Saw a dietitian, adjusted my lifestyle to accommodate.
etc
etc
etc
If someone suggested it, I trialled it. And most importantly, I documented it all. I have copies of every test, every scan, every report, everything. This helped reduce duplication, because you could bet when changing from one dr to another they’d order the same test, to get the same result, or recommend a treatment regime I’d already trialled. Having it documented stopped them repeating it all. ‘I’ve already had that scan/test and here’s the results/report…’ It also demonstrated I was being proactive in my own care.
When it comes to some medications it can take time for what the medicos call ‘a therapeutic dose’ to build up sufficiently to take effect in the body. I was trialled on some migraine treatments that took a month to take effect, then months of the trial. Then I had to have a slow reduction coming off of them. Stopping them ‘cold’ was a known risk. In all the trial was around 6-7 months. To be honest, I wasn’t all that worried about the time the trial took. If it worked, that’s all I wanted. Unfortunately, they didn’t work. Sure, there were benefits in changing my lifestyle, but it didn’t resolve my pain issues.
Merl from the Modsupport Team
The length of the styloids can be an issue- the neck is a very cramped space with major nerves and blood vessels close together, plus where they exit the skull base is very close to the styloids, so a thick or angled styloid process can compress them as well.
Simple relaxation exercises for your muscles should be okay, but depending on what sort of PT the doctors want you to do, I would be wary- certain neck positions can put the styloids closer to blood vessels (depending on what angle your styloids grow), any sort of traction/ manipulation could be dangerous. You would need a physiotherapist who understands Eagles and knows the risks- one of our members, @Awest , wrote a paper about this, here’s a link:
WESTBROOK et al. (2020) - Eagle’s syndrome, elongated styloid process and new evidence for pre-manipulative precautions for potential cervical arterial dysfunction – Doctor info and research article - General / Research Papers - Living with Eagle
So while I agree with @Mod_support and you’ve been given great advice, there are things to be considered with PT…
I totally agree w/ all that @Jules said. I had one styloid that was longer than the other but the shorter one was thicker & growing more straight down. The longer styloid caused more of my pain symptoms, but the thicker one caused more scary symptoms (blood pressure & heart rate problems). My doctor chose to remove the shorter thicker one first. I had my two surgeries about 9 mos a part, & it’s been 9 years since my first surgery. I’ve been about 90-95% symptom-free since both of my styloids were removed. The after effects of surgery for me are some facial numbness along my jawline on one side which I don’t notice unless I rub it, & First Bite Syndrome on the other side which is not uncommon after surgeries in the area of the neck where the styloids are. For most people it goes away w/in a few months, but it’s stuck around longer for me. It’s a fairly insignificant problem now & only happens once in awhile. FBS is caused by injury or irritation of the glossopharyngeal nerve. My GPN was wrapped around my styloid on the side that has FBS, so it had to be moved off the styloid. It was possibly slightly damaged from that which may be why FBS has stuck w/ me for so long.
Thank @Mod_support @Isaiah_40_31 and @Jules for the detailed help. Everything you guys say makes great sense. Only problem for me is finding a good doctor. I have seen many, including the one listed in the group, from my country and they don’t believe my styloids are an issue. I can visit India or Thailand at max for treatment but even so, its a rare problem that gets treated, even in those countries.
What I also believe can be a problem is my hyoid bone. Is there any way I can rule that out cause no doctor is gonna help me with that one for sure. I have done CT scans with contrast.
I’m sorry that you’ve tried a doctor listed here & they weren’t able to help…
If you need to know of any doctors in India, in addition to the one on the list, there was a research paper published with Indian authors (although I can’t actually find it now, but you could try googling the names! :
Elongated Styloid Process- A Review by Silpiranjan Mishra (1) C. Krithika (2) RamachandranSudarsshan (3), S C Selvamuthukumar (4), Priya Ramani (2), S. Uma Maheswari (1)
Affiliation:- 1Post graduate trainee, 2Reader, 3Senior lecture, 4Professor and HOD, Department of Oral Medicine and Radiology, Thai Moogambigai dental college, Chennai, Tamilnadu, India
You could use the search function to look up discussions about hyoid bone syndrome on here- the symptoms can vary a bit, often members feel like they’re being choked, & seem to have clicking in the throat. Some of our members are quite good at spotting things on CTs if you have any images?
I am blown away at the knowledge in this group and am learning so much from reading through these posts. I do want to add a thought for you about your arm. Have you heard of/been looked at for TOS (Thoracic Outlet Syndrome)? When you write about the pain radiating down your arms, and the part in this one where you can barely carry a bag without dying, it really sounds to me like TOS.
I have bilateral ES with IJV compression, also stenosis at the R transverse process (going from memory on that name ;-)), and I also have bilateral neurogenic TOS.
TOS unfortunately like ES and IJV compression is not something that many doctors understand or can diagnose; not unless it’s due to an extra rib and or vascular in nature. I won’t write more about it in case you already know all, but please reach out if this is a new dx to you that you want to explore. I’d be more than happy to help you find some resources (there’s a fantastic FB group if you on on FB for TOS!)
I have looked into the article. Thank you. Thing is, it’s quite difficult to reach out to them, they barely reply but I will keep trying. As for the scans,
Funnily, it started with me thinking I have TOS, maybe I do, I am not sure yet cause nothing shows on the tests and I have done them all. I did a CT scan to for TOS and here I am lol.
Thank you so much for trying to help me out. Really appreciate.
And yeah, finding a doc who will ever validate me and not say i have fibromyalgia has been a challenge to say the least
Your styloids look very angled and pointy, they could well be causing symptoms! It’s not just the length of the styloids which cause symptoms, but the angled they grow at, the thickness (yours look narrow though) and if they’ve very sharp…The greater cornu of hyoid (hyoid process) does look quite long, but I can’t see any calcification of the stylo-hyoid ligament…
Hey, I had a friend help me out with the length of the styloids and the distance between c1 and the styloid. The distance between the C1 and the styloid determines the angle right? Also since there is not calcification of the ligaments, does it mean that if I get the surgery then the ligaments wont be taken out and can calcify later and I might have to go through all that again? Everything looks in the normal range which makes very weird.
@Jebin -
To me the calcification looks like stylohyoid ligament only. In every image (especially visible in the first set of images), there’s a gap between your skull base & the calcified part. This would also explain why the lengths seem w/in normal range i.e. your styloids aren’t elongated, but you have sections of s-h ligament which are calcified up close to the styloids.
I agree w/ Jules that they do look angled, & of course, where they’re located, they’re probably tangling w/ some of your cranial nerves including the accessory nerve. Some of our members w/ TOS symptoms have recovered from those symptoms once their styloids were removed.
I also see what you meant about your neck. Have you had a chance to look at @vdm 's posts about exercises that can help recover the lordotic curve? There are also many videos on YouTube. Recovery isn’t something that happens quickly. It takes months of doing the exercises, but they aren’t difficult & shouldn’t be painful.
I’m sorry for the trouble you’re having finding a surgeon to help you. It’s possible the doctor more local to you turned you down because he only deals w/ elongated styloids & not calcified ligaments. We’ve found that to be a problem w/ some of the surgeons in the US as well.
Hey,
About the neck, yeah I have trying similar exercises for quite some time now, almost 2/3 months so fingers crossed.
And regarding the ligaments, so what would the procedure maybe look like? since only parts of the ligaments are probably calcified, do you think taking the styloids and the ligaments out would be the safest? Also, is this common?
I have also been wondering about the gaps between the styloids.
We have several members who had only calcified ligaments but not elongated styloids. The styloids don’t need to be touched when this is the case, but the ligaments do need to be removed to get relief from symptoms. I’m not sure if the surgeons who do calcified ligament removal only remove the calcified sections or if they remove the whole ligament. It likely depends on the surgeon but if you find someone willing to do this, you could certainly request that the full ligaments be removed.
As I mentioned, many doctors don’t define calcified ligaments alone as ES. They need to see elongated styloids to feel there is a problem. Since yours aren’t apparently elongated, it may be more difficult for you to find a surgeon who considers that ES can be calcified ligaments alone & is willing to remove them. I’m sorry for that. Continue to advocate for yourself. You have many very accomplished surgeons in your country. We may have a paper or two in our Research Paper section that mentions calcified ligaments alone can cause ES symptoms. Even Google supports our definition of ES:
Eagle’s syndrome is a condition associated with the elongation of the styloid process OR calcification of the stylohyoid ligament.
