Hello all… new patient here. Was just diagnosed a couple of weeks ago and waiting for a second opinion early next month. I’ve been reading many of your posts on so many different topics and learning so much. Thank you all for sharing your experiences, information and knowledge about this crazy syndrome! I am wondering if anybody actually started having symptoms shortly after a trauma ? Like a surgery in the neck ? In my case it was about a couple of months after a Thyroidectomy, that left me seriously bruised all over the front of my neck all the way down to my chest. Thanks.
Tonsillectomy is a known cause of ES, as is neck trauma. Not sure that I’ve read of anyone having ES after thyroid surgery, but given how you say your neck was bruised I guess it’s possible…
Thanks Jules … yes, I’ve read about Tonsillectomy trauma as a possibility… but not Thyroidectomy. I never thought of asking the doctors on my previous appointments; but I will on my next appointment with this new doctor. Thanks.
Mine started during a dentist for a filling. By having my head turned for too long my styloid process punctured my trigeminal nerve…3 root canals, 2 teeth pulled and about 12 trials of medication over 5 years I was finally diagnosed with Eagle Syndrome. Had surgery with in 30 days and my pain reduced by 75%.
My daughter just had a thyroidectomy and did not have any bruising. I don’t know why Eagle Syndrome would cause bruising?
Thanks for the reply. I don’t have bruising from Eagle Syndrome. I was wondering if the bruising/trauma caused by the Thyroidectomy might have triggered/caused my Eagle Syndrome. Many videos I’ve watched of people who’ve had Thyroid surgeries, none of them had any bruising. That’s why I became curious. I did not know dental work could cause ES !
They don’t know what causes Eagle Syndrome but the theory is it could be head trauma. I was a skier an probably had whiplash type trama a few times in my life. My Elongated styliods were probably at the base of my skull when I went to the dentist and it was just coincidence that it was the first time I experienced break out pain from Eagle Syndrome.
I am pretty sure you probably had a elongated styliod for awhile and you are feeling symptoms as they grow or like me something was compressed into the styliod.
I see, makes sense and it’s possible. Will find out more hopefully at soon… Thanks.
I agree with Ann. I think you likely had elongated styloids & the trauma from the thyroidectomy may have caused things to shift in your neck bringing the styloids into contact w/ nerves which previously weren’t bothered by them. This is not uncommon.
I think you understood Ann, but what she said was the dental work didn’t cause ES; it was already there. All the dental work did was ignite symptoms that eventually alerted her to the fact something else was going on.
Like Ann, I had a couple of whiplash type injuries & I think that’s what started my styloid elongation though it was 30+ years after the events before I began having symptoms.
Thanks for your input. That scenario sounds plausible. Will discuss all that at my next doctors’ appointment for my second opinion. I’ll ask him to look at all the imaging I’ve had from pre and post thyroidectomy. I will try to get copies of one panoramic xray I had with one periodontist just before my surgery. The reason I am trying to find out more about the actual cause, is because there is one other thing happened a month after my thyroid surgery. I ingested glass…! and a month after that I started having symptoms; so want to make sure all other causes are ruled out before they confirm the ES diagnosis. And with 4.3cm & 4.9 cm elongated SPs showed up on my 3D-CT scan it could very well be ES causing all this pain.
I already called Dr. Hepworths’ office yesterday and got some info. I initially looked at a doctors’ list posted by Nicole1000 (pdf) on a post started by Jules in Aug’17… CO is not on that list. But thanks for the new one you emailed me. I’ll save it somewhere. I haven’t read all about you yet, but did you have any surgeries … ? how are you feeling today ? Thanks again.
Hi @ Aboulog1,
Sorry to hear about your glass ingestion. That actually happened to me once but it ended up lodged in my upper gums between 2 teeth (painful!) so I didn’t swallow it. I suspect the symptoms you’re having are from ES & not the glass as the glass should have passed through your system by now, but leaving no stone unturned is important & that should be checked.
I did have bilateral ES surgery. My first was in 11/14 & the second in 8/15. Surgery turned my life around though the full recovery from each one took close to a year. I was back to doing my life as usual w/in a couple of months after each surgery though. Surgery really helped me. I do still have some residual nerve pain here & there but nothing that impacts my life in a significant way. Surgery was the right decision for me. (FYI, I hiked 11.5 mi. this morning…that’s how well I’m doing).
Dr. Hepworth sounds to be an amazing & compassionate doctor. I hope you’re able to get in to see him ASAP.
Glad you did not swallow the glass! It was too late for me to spit it out… it was in the back of my mouth/tongue where I felt it first and held it for a second before I swallowed it with my milk, not thinking it could’ve been glass. But it was, and it did pass my system after a few HELLISH days. It’s where I felt the sharp pain in my throat on it’s way down, that exact spot where the dull pain started shortly after that and have gotten much worse since then.
Several imaging procedures did not detect anything. Now with ES I will ask that they check everything before they cut my neck again! Any idea how you got the glass in your mouth ? Mine happened when a room mate broke a tall glass in the cabinet and pieces flew all over and ended up in the shorter one I used ! They thought I was crazy, but later I remembered seeing a broken glass in the trash can and found more glass shards on the floor of the cabinet! It could not have been the milk nor the plastic container.
Glad surgeries worked for you. I have already scheduled my appointment with a Kaiser doctor who is ENT/Skull base surgeon. The 6th ENT doctor I will be seeing. Will see how things go with him and go from there. I will try to see Dr. Hepworth as well since so many of the members here know him and recommend him. Thanks and happy hiking.
Our members who’ve had ES surgery through Kaiser have usually had an ENT with a neuro &/or vascular surgeon assisting. I’m only aware of CA Kaiser procedures. I think the surgeries turned out well as those members never really came back to comment after their surgeries. I believe the surgeries were external. I have a friend who’s an ENT at Kaiser & she said she only does intraoral ES surgery. Different doctors, different approaches. Just make sure your clear that if you have surgery, you want the styloid removed as close to the skull base as possible & you also want any part of the stylohyoid ligament(s) that is/are calcified to be removed. You also want to make sure the ends of whatever remains are smoothed off. Sorry if this is redundant info but these are things we can’t emphasize enough.
Never came back to comment ?! Would’ve been helpful to post an update … unless they did not make it ! I hope things went well for them. Yes, I will try to understand everything before making any decisions. I’ve watched one short video on youtube where they were removing/smoothing off… I’m still trying to understand though why remove the styloid and not just shorten it … it must have a function there, to support things … or ?!
It was not until my third visit with the last doctor, when I went in with more pain and new symptoms (he saw a couple of tonsil stones on that visit! I’ve never heard of them before!), and while he was looking at my previous imagings that he suspected ES! He did not know of any doctors in CO who operate on ES.He did mention CA though.
Not at all, thank you for the information. I’m glad I found this forum; I’d like to learn about this as much as I can. Because I am very concerned…especially after my Thyroidectomy almost a year ago, not really looking forward for another operation! I was surprised to learn that not too many doctors know about ES. All the previous doctors kept misdiagnosing me, and prescribing the wrong medication. Thanks.
The styloid processes are merely anchor points for the stylohyoid & stylomandibular ligaments & some smaller muscles. The stylohyoid ligament plays a small role in swallowing. The s-m ligament seems to do fine when detached from the styloid as well. I don’t know of anyone who’s had his/her styloid(s) removed whose had a problem w/ the structures that attached to it/them after surgery.
I sympathize on the surgery front. Even though it’s been 6 years since my ES surgeries, I now need bilateral hip replacement surgery. Too much jogging & hiking long distances over the last 11 years, I guess. Not looking forward to that one!
Thanks for the info. Good luck with your hip treatment.
The soonest to see Dr. Hepworth is Mid October !!!.. but need to see his NP first. Thanks.
Sorry you have a bit of a wait but I’m glad you’ll at least get your foot in the door by seeing his NP. Make sure to get your name on his cancellation list if it’s not there already. That can expedite your appt w/ him by day or even weeks.
I will call tomorrow and make sure they add me on the waitlist. Thanks
Sometimes if you call daily right when they open up in am, they get last minute cancellations. If you are felxible and can come in on short notice, they sometimes will give the person calling the appt time rather than make a bunch of calls from a list. Also if you bug them enough, they will squeeze you in, just to get rid of you calling them all the time.
I’ll do that beginning on Monday ! Thx.