After an entire lifetime of terrible headaches and after 3 years of trying to get somebody, anybody to look at my styloids, today I got an answer. I’d finally decided I was tired of begging and just booked myself in with Dr. Osborne. He sent in an order for the CT. I got that done today and the below is from the radiologists report.
“Calcification of the stylohyoid ligaments, measuring up to 4.4 cm in length on the left, compatible with Eagle syndrome in the appropriate clinical setting.”
What’s next?
After the imaging gets to Dr. Osborne, I’ll be meeting with him for a consult. Beyond that, I’m not sure. I’m just taking it one step at a time.
HOORAY!! !! I’m so glad you finally have a diagnosis, @Kmarty14! Dr. Osborne will be very helpful in interpreting your imaging beyond what the radiology report says.
Migraine level headaches can be from vascular compression being caused by the styloids or from compression/irritation of the trigeminal nerve by the styloid(s), & also sometimes by compression from soft tissues in the neck like lymph nodes, muscles, nerves, other veins/arteries, & even fascia. The internal jugular vein is most often the culprit & it can get squashed between the styloids & C1 vertebra. It doesn’t look like there’s much space between your left styloid & the transverse process (knobby ends of the C1 vertebra) of C1 so therein could lie your problem. The right styloid appears to be a good distance away from C1. Since it looks like your imaging was done w/o contrast, the veins & arteries aren’t visible in your images for me to be able to provide a more concise opinion.
From behind (3rd image) you can see that your right styloid is more sharply angled inward than the left one which is longer. That may or may not be significant as far as the symptoms it is contributing.
Thank you so much for doing the labelling. I wondered how much space between the stylohyoid and the C1 is normal. I definitely suspect some vascular funny business due to some of the features of my headaches. I’m really excited to see Dr. Osborne next week to hopefully get more answers.
I’m glad that you’ve finally got an answer for your symptoms, whilst not pleased for you to have ES, it’s good to be validated!
Dr Osborne is very experienced, so see what he thinks about potential vascular symptoms and whether its worth having a CT with contrast… Do you think you would have surgery with him given the cost and distance, or is that not an issue for you?
I know the CT had contrast per Dr. Osborne’s order. I must have just not been able to find that view on the disc. So I’m definitely eager to see what more he can tell me.
Anyway, my thought is to ask Dr. Osborne if he thinks surgery would be beneficial. And then, if surgery is in the cards, see if he can recommend someone nearer to where I live who, hopefully, would be in network with Blue Cross Blue Shield. I’m in Kansas and, in looking around the forum here, it looks like there might be some options in state or nearby.
I mostly went to Dr. Osborne because, with my headaches beginning to affect my ability to work, I need definitive information to choose between potential next treatments. And so far local doctors have just been referring me around because they don’t know about Eagle (at best) or they straight deny that Eagle is even possible (at worst).
Meanwhile, I’ve got treatment plans on hold for orthognatic surgery & orthodontics (for severe class II malocclusion and TMJ stuff), CT myleogeam for CSF leak check, headache specialty reassessment, etc, just waiting to get an Eagle answer. It has been very frustrating because, if Eagle is my main trigger, I definitely want to be able to weigh that in the balance when considering those, particularly orthognatic surgery. If it is not the actual cause of things, though, I need to know that too so I can try these other things. So the fact that I have had to beg for even a referral locally has been driving me berserk. Which is also why I just got fed up and decided to jump straight to Dr. Osborne.
It feels like, if I followed the proper referrals path around here, I’d be wasting years of my life talking to people who think I’m crazy and all I’d get for it is older and poorer.
Sadly quite a few members have ended up poorer and older still with symptoms, so it was a good idea to get your diagnosis through Dr O… See what he says about vascular issues then, as this could affect who you see for surgery, not all the doctors on our list are experienced with this. (Dr Hepworth would be the closest VES doctor to you but he does have a long waiting list…) Some members have been able to have surgery with Dr Osborne paid for through their insurance if there’s nobody experienced in their area, but this might be too much of a fight for you to want to take on! Here’s a link to a discussion that @vcp02 posted with info : Dr Osborne- Blue Cross Blue Shield Out of Network Waiver-2025 - Welcome / New User Help - Living with Eagle
Some members have found that their bite alters after ES surgery, so maybe you won’t need any surgery for that if you opt for ES surgery first!
Look forward to hearing what Dr Osborne has to say…
I am so glad you are getting answers!!! I also have the main symptoms of vestibular migrane and headache, but found Dr O in March and found I have ES. Please keep me updated on what he says/your journey. I hope you find relief soon!
I’m back to update! As I have found it SO helpful when I find really detailed, play-by-play threads of people’s journeys, I’m going to try and do that on this thread going forward. If I have to go through this, I may as well document it so my info pops up for future people running keyword searches on this thread like I am.
First, here are links to a couple of my other threads, for context:
Since my May & June this year consisted of an Eagle Syndrome diagnosis from Dr. Osborne, a referral and consult for lower jaw surgery (mostly related to ES), several orthodontic consults, & ultimately getting new braces, I took most of July & August to just breathe and think about next steps. As evidenced in the threads above, I am struggling with how to navigate jaw and ES treatments.
Where am I now in early September?
Sending Lots of Surgery Consult Requests
Unfortunately, for the past few weeks I have been having super treatment resistant migraine attacks. Even during the interictal phases, I am struggling to keep up with my job duties.
Of course, increased disability is always a big motivator to try and take next steps. After reading the responses in the thread above urging caution for jaw surgery, I decided to begin intentionally reaching out to ES surgeons with the goal of consulting for styloid surgery. I am particularly focusing on ones with VES experience as I suspect vascular ES and IJV compression.
My current doctor short list:
Dr. Peter Nakaji, AZ - I was drawn to his office as they had an easy online consultation request form, they take insurance, and reports on here say they are easy to work with. I also see he has vascular experience. I sent my request yesterday afternoon and have already gotten a call to help me order the necessary CT venogram.
Dr. Peter Constantino, NY: I noticed that Dr. Constantino is listed as having done work with quite a few mandibular (lower jaw) cases in addition to his ES specialty. I’m hoping, if I could get in, that he can provide an opinion on timing recessed jaw and ES treatment. They say they take my insurance type. I have sent an email and filled out an online contact form and am waiting to hear back.
Dr. Andrew Coughlin, Omaha, NE: I am located in Wichita, KS and Dr. Coughlin seems to he one of the closest ones with high surgery volume. I left a voicemail yesterday and am waiting to hear back.
Dr. Ryan Osborne, CA - As reported above, I saw Dr. Osborne for initial diagnosis. I chose him because I was able to get a virtual consultation. At this point, though, he is lower on my list for surgery for financial reasons.
Dr. Hepworth, CO - I have called and left messages a few times and haven’t heard anything back. From reading here, I hear that is pretty par for the course. While I’d love to be able to get in with him as he is good with VES and is closer to home for me than many other docs, I’m really focusing on trying to find an easier pathway, for now.
@Kmarty14 - You’ve done good research & have chosen some very experienced doctors/surgeons. Dr. Hepworth is excellent, and his office will eventually get back to you, but he is booking initial consults in Dec. this year or Jan. next year or perhaps later. You would meet with one of his NPs for your first appt (I think they’re doing telehealth appts now) then with him in person at an appt on another day/time so it’s not as straightforward as seeing some other doctors. He did my 3rd ES surgery w/ good results, so I think highly of him, but it was a process to get in to see him.
Update: Still have only heard back from Dr. Nakaji’s office. Currently am trying to get the CT venogram order locally.
IN OTHER NEWS
So…has anyone ever had an external visible lump / bump / bulge on the neck behind the ear as a part of this. I was checking my hair in the mirror just now and noticed this.
It doesn’t worry me. Just kind of intrigues me. I’m sure it could just be a lymph node, but I’m not fighting any major infections or allergies right now.
Looking at anatomical charts, I’m wondering if it may be a distended external jugular? I have definitely been having more symptoms around that area. Pulsatile tinnitus, whooshing, ringing, sensation of ear pressure. It also just feels…bulky…? Sludge?
Idk. I’ve been in a nonstop migraine attack lately and am now also in a fibromyalgia flare. My neck is BIG angry so I’m home from work today trying to coax my traps, suboccipitals, neck muscles, etc to pretty pretty please stop spasming.
@Kmarty14 - That looks like your SCM (sternocleidomastoid muscle) which connects right behind your ear & extends down to your collar bone area. The SCM can become enlarged/inflamed when the spinal accessory nerve is irritated as that’s the cranial nerve that innervates it.
Here’s a good description of the origin/insertion of the SCM:
Origin: Attaches to the sternum (breastbone) and the medial clavicle (collarbone). Insertion: Connects to the mastoid process (the bony bump behind the ear) on the temporal bone. Name breakdown: “Sterno” for sternum, “cleido” for clavicle, and “mastoid” for the mastoid process.
(Wikipedia)
@Kmarty14 I agree with @Isaiah_40_31 as it looks more posterior than I would expect for it to be your jugular. It’s common to have tight SCMs from stress or from a forward head posture. There is something called “tech neck” which involves SCM tension from looking down at phones and other screens. A tight SCM can be a source of headache, pulsatile tinnitus and ear pressure since it is compressing the underlying structures. Massage (including the traps), dry needling and/or trigger point injections can relieve that tension.
That definitely tracks. My neck has been tight tight tight lately. I used to get massage and dry needling regularly but it just got too expensive. Been trying to manage by doing my PT exercises at home, making postural modifications, self massage, etc.
Maybe just goes to show how much work it takes to manage and compensate for the negative effects of stuff like ES and recessed jaw.
