I’m due to have a CT for suspected eagles syndrome soon. I’m a 26 year old male, and have symptoms of classic eagles syndrome with some milder vascular symptoms (sometimes I have a pusitlile tinnitus whooshing if I get up from a lying position quickly).
And have become extremely worried about having a stroke, as the research points to young people with elongated styloids and ligaments having a significant increased risk. What’s more, I’m a weight lifter, and have been doing weighted neck curls for several months — the paper also references mechanical neck movements having the ability to cause carotid artery dissection, so I feel like I’ve been playing with fire here.
I’ve promptly stopped doing these having discovered this, but I’m sat here worried now that I’ve done some permanent damage. I’m Envisaging my artery being very close to being severed, and that any moment I could just have a stroke. Is this a justified fear? I’m especially concerned that the risk seems to be increased in young people. I know stroke with eagles is pretty rare, but this paper seems to suggest I’m at high risk. It could be ages until I discover the extent of the eagles syndrome and then subsequent surgery, so am I just a ticking time bomb until then?
Then I also thought, what if even if I don’t have a stoke before surgery, what if I’ve done enough damage to the artery to the point where surgery in and of itself runs a higher risk of stroke while on the operating table? I realise I’m spiralling with what ifs…
Also, as a secondary question, what happens to your muscles when they dissect and remove the calcified styloid ligament? I mean, don’t you need that ligament and muscle to allow your jaw to properly function? This is all super stressful.
LG18,
I think it is a good idea to error on the side of caution and pull back on the heavy weight lifting activities until you have your CT scan and speak to doctor about next steps.
I think caution about your activities rather than going into fearfulness and anxiety would be a better approach. You are going into the “what if’s” arena which will not help you at this time. Ruminating on worse case scenarios only serve to increase anxiety. Try to take a step back and focus on educating yourself. Many Eagles patients with vascular involvement do have symptoms that are positional. I would stay away from any hard impact sports where you could fall and injure neck ie: water skiing, mountain biking, etc.
I suggest identifying potential ES surgeons in the event you are diagnosed with Eagles. In the hands of an expert ES surgeon, I highly doubt you would have an issue while on the operating table. They will know what they are heading into before they are opening you up.
As you know, Eagles is very rare, vascular ES is even rarer, and the risk of a stroke even rarer still…I’ve been moderating for about 8 years now & with all our members I’ve only heard of a couple of members who’ve had a stroke. Obviously sensible, as @Snapple2020 says to be cautious and avoid risky stuff though.
The vascular symptoms you mention sound like possible mild vein compression rather than the carotid artery (arterial compression/ irritation symptoms are dizziness and fainting, especially with certain movements). I think if you’d had any significant vascular compression you wouldn’t have been able to do that level of exercise…
I can appreciate the worry you have, it’s easy to get fixated on symptoms & to wonder what’s going on inside, I did with the jugular compression I had. Where are you with getting to see a consultant on our very slow NHS?
Re what happens to the attachments, they’re usually just left in, and although the styloids have several ligaments attached, it doesn’t seem to make any difference when the styloids are removed. I certainly couldn’t feel anything different after surgery (apart from the improvement in symptoms!)
I hope that you’ll be reassured…
Thank you for your very level headed response, Snapple. Appreciate it. I will certainly be laying off that stuff for the time being. I can only hope I haven’t done any damage.
Thanks for such a great response, Jules. Your post is indeed reassuring. And yeah, really it’s the compression elements that have heightened my concern in respect to Eagles. I mean I’ve had a lot of the symptoms for years, but it was only when I started to read about ear fullness, whooshing etc that I realised I do have some of those issues, albeit mild as I say. Perhaps it is vein related, then, I’ll have to go over some of the posts here and have a read again.
I’m due to see Dr. Johnathon Hughes soon for an in person consultation. Haven’t even attempted the NHS given the slowness.
Regarding the attatchemnts, does that mean the muscles are just kind of left there without blood supply, then? Detached at one end?
Thanks Isaiah. My symptoms have remained constant for years, and didn’t get any worse during weightlifting, so hopefully if I just stop those movements now, that’ll be fine.
What I mean is, though, doesn’t the stylohyoid muscle connect to the styloid process as well? Does that just get dethatched, and you lose that muscle? As I don’t see how to can remain if the styloids are totally removed. Always something I’ve wondered.
The styloids are an anchor point for three muscles (stylopharyngeus, stylohyoid and stylomandibular), plus 2 ligaments (stylohyoid and stylomandibular), with the stylohyoid muscle and ligament inserting on the lesser cornu of the hyoid bone…all I can say is that we’ve had this discussion quite a few times & members have asked their surgeons, & their answer is that the body can do without them I haven’t felt any difference with swallowing, talking etc, you would think it would have an effect but doesn’t seem to!
Interesting, thank you. Don’t know if anyone remembers my posts from before, but I was also planning to have jaw surgery after getting this issue dealt with. I wonder if there’s any significance in the removal of the stylohyoid muscle regarding that.
We know jaw surgery is as much about moving bones as it is balancing everything between the nerves and muscles; when the jaws are moved forward, there’s going to be a difference in the distribution of tension on the muscles, and when the forces of muscle is too great, occasionally people can get relapse where the bone resorbs.
It would be interesting to know whether the removal of those muscles would make the proceedure more or less stable, or have no real effect at all. I guess that would be determined by the tension and strength of the group of muscles that attach to the styloids.
The study is the only jaw surgery study which even mentions that group of muscles that I could find, but it indicates that when the Stylomandibular ligament is removed, it actually makes the jaw surgery movements more stable. I guess there’s less force pulling back on the mandible.
I’ve also noticed that two of the jaw surgeons I’ve consulted with so far have been co-authors on a few eagles syndrome papers, so it’ll be interesting to talk to them about it.
The topic of your jaw surgery should certainly be discussed at your ES appointment, @LG18. Getting your potential ES surgeon’s opinion about the effects of styloidectomy on future jaw surgery is a good idea. I am glad you found a research article with encouraging information. What you suggested about the absence of ligaments, etc, stabilizing the jaw because of less backward pull makes total sense.
Hi all, just revisiting this question about stroke risk and wondered what pain is normal/remains typically when on nerve pain medication? I’ve recently started taking pregabalin twice daily which has subsided the nerve related pain but now have intense pain right in the area of the compression (vascular) on my left side. It spreads to my left jaw, ear and shoulder when I’m leaning on it. I am not daring to turn to the left because of the fullness feeling it creates. Just wondering if this is something others have felt with vES and on nerve meds?
Thanks
It’s tricky to know sometimes- I’ve been fine on Amitriptyline for a while now, & it helps the residual nerve pain I have following surgery (it definitely improved after surgery but hasn’t gone completely), but occasionally I have a flare up of nerve pain on the opposite side of my head & it doesn’t help with that side, bizarre
If the carotid artery is irritated or compressed it can cause pain right up to the eye that side, or down towards the chest I believe. Fullness feeling is more generally associated with jugular compression, I used to get that if I tried laying on my worst side before surgery…
It is all hard to say for sure though, I’m sorry
I was offered this drug for fibromyalgia. After reading about it I declined. i dont know if there are withdrawal symptoms but it might be worth it to stop or taper down and see if the problems go away.
I haven’t felt any difference with swallowing, talking etc, you would think it would have an effect but doesn’t seem to!
