Just had a CT scan this morning. Ive been looking at the 3d image and im almost certain that I have an elongated slyoid on my right side. Here’s a photo I snapped. I will upload several more images once i get them to my phone.
I am curious about the proximity to what I believe is the carotid artery and if it might be causing other symptoms or preset a risk during surgery. You cant see it in this image but I will share some with blood vessels visible soon.
2d images showing parts of the styloids. The one on the left in the image would be my right side, and it looks longer than the other.
Eek, your right side is definitely very long, the left side is quite elongated too! Your C1 looks a little off kilter on a couple of the images but not on all of them…
I agree with @Jules on all points.
In this image - it looks like your left styloid could be slightly curved toward the back based on the way it comes off the skull base.
Wow that looks painful. My styloids are not as long as yours, but thick. Have you not consulted a ENT surgeon yet??
Not yet. I have a referal for a ENT from my PCP. The referall was given at the same time as the referal for the CT scan. I recieved a call from the ENT she refered me to last week and they said once they recieved the CT scans we could proceed from there.
I havent recieved a diagnosis for ES yet. I am not 100% sure how to proceed next and whether I should immediately contact one of the doctors on the list on this website in my state, wait a couple days to see if the ENT that I was refered to calls me, or call that ENT right away.
My 2 cents: Immediately reach out to one of the doctors on this website. The reason is that some are not taking on new patients, OR you may have a wait time of months. My own meeting with Dr. Hackman in NC took I think 3 months to set up. One must also contend with holidays.
Regarding your profile question: " My question is: : What are some activities that helped you to cope when you were being gaslight and had to wait long periods to get the medical care you needed? "
— From my experience, nothing. ALL Doctors I worked with in CA where completely naive about a ES diagnosis. Despite concrete medical evidence of hearing loss, neck pain, insomnia, chronic fatigue, more headaches. Part of this was because I suffered a serious TBI from an auto impact years ago. But mostly it’s just plain old ignorance, OR they simply want your money. An audiologist in West LA is one prime example. The most messed up part, was having met an ENT at Cedar Sinai who LITERALLY worked in the same office as ES surgeon Ray Osborne who sat like one door down. The ENT in question didn’t have the sense, clue, or knowledge to say “hey, given your neck/head trauma, MAYBE you have ES which the guy 1 door down specializes in.” Indeed, I had to fly out to see Dr. Hauser in FL out of desperation to get the proper cone beam and MRI tests done. In short, you’ve got to become your own medical student and the teacher of your own doctors.
You may want to use this study from the National Library of Medicine per “Traumatic Events and Eagle Syndrome: Is There Any Correlation? A Systematic Review” to teach your dumb a** doctors:
Your experience is a great endorsement for self-advocacy, @HappyBear. Thank you for the article link & for good support & information for @Kiriez!
Unfortunately many ENTs are unaware of ES, so it could well be that the ENT you’ve been referred to won’t be experienced with diagnosing it; if you have to wait very long for their appt it might make sense to be reaching out to one of the experienced doctors on the list in the mean time as like @HappyBear says, you could be waiting for that appt too…if you’re likely to see your local ENT fairly soon then it’s not so much an issue. But they are mighty long styloids so I don’t think there’s any doubt that they could be causing symptoms!
Thank you Isaiah and also True to what Jules wrote.
The other issue that comes up, is that you will probably be seen as a hypochondriac, or be referred to “pain management” or to do some psychological method like "Cognitive behavioral therapy " (CBT, about $100/hr) or sent to an audiologist to get hearing aids (about $5,000 in LA) that create white noise so as to heal your tinnitus and resolve hearing loss. The only thing these solutions have in common is that they lead you straight into mother poverty.
If you are able to communicate with your medical people, you send them this youtube link:
" Decompression of the Internal Jugular Vein for Eagle’s Syndrome" – https://www.youtube.com/watch?v=Yn5JK3iCq4s
In short, you must educate yourself and arm yourself with knowledge so that you can school the MDs and get a correct diagnosis. Below I’m providing an MRI script from one of the super expensive doctors I saw (I won’t name them). I recommend you copy/paste and provide to your Primary Care Physician so that they issue an MRI order.
And for God’s sake, DO NOT let some chiropractor “adjust” your neck! Massage yes, high speed “twist twist, crack crack” NO. Even if the chiropractor says “well I cannot bill your insurance if I don’t do this…” Just walk away, and pull a Nancy Regan and “just say no” hee hee hee
STAY AWAY FROM HEAVY ALCOHOL. Why? Your styloids may be blocking your jugular veins and your brain isn’t detoxing. I realize this is hard when you find yourself alone, in pain, or not understood. To that I say, welcome to divine suffering, and their is a purpose for it. We all on here know about it and speaking from my own journey, I’ve offered my suffering up to Christ so that my own suffering is not in vain.
Lastly…PRAY especially for guidance and strength. The bottom line is that you’re suffering, you will continue to suffer, and you must stay focused on first documenting the problem, then reaching out to one of the surgeons, and praying you are accepted as a patient, and prepare. It’s a logistical challenge all the way around. This is why you’ve got to be organized…get your ducks in order. Whether you like it or not in my opinion, you and everyone else who gets this extremely RARE disease have a spiritual calling, and you’re called to grow, which is to struggle and fight. Fight for your life and your joy, and realize that you may well be given a grace along the way that is a divine gift.
One last piece of info per an analysis I did on that National Library of Medicine study, outlining key research points:
“Car accident[s] with whiplash” (i.e. neck injuries) are in fact a causal traumatic event for ES.
It’s a RARE disease. “An elongated process is present in approximately 4% of the population, and the vast majority of these are asymptomatic. Eagle estimated the prevalence of symptoms in patients with elongated styloid processes as 0.16%” A quick google search indicates the global human population at 8,019,876,189, of which 4% (or 320,795,047) have elongated process present. Of that, .16% with elongated slyloid process = 513,272.08.
2a. Mathematically, “assume 513,272.08 of the entire global population get a rare disease (like ES), what is the probability that I will get the rare disease (remember, global human population is about 8.1 billion)?” Answer: 0.0000649 or 0.00649%. For context, the statistical percent probability of being struck by lightning in a given year is approximately 0.000082%.
+++++
Diagnosis:
G52.2 Disorders of the vagus nerve
M85.88 Elongated styloid
TG93.2 Benign intracranial hypertension
Please do a CT VENOGRAM of the brain and cervical spine with contrast. Please do a 3D reconstruction to show styloids. Please also measure the styloids.
CPT: 70460. 70491.
Patient with symptoms of intracranial hypertension (pseudotumor cerebri) compatible with compression of the internal jugular vein at the transverse process of atlas (C1) or styloid process. Please do the scan in neutral.
Please make sure the CT Scan is capture while the contrast is in the internal jugular vein. This patient is suspected of having significant compression of the internal jugular vein(s) between the styloid bone and/or atlas. This is not a CT angiogram order it is a venogram. Surgical decisions will be made based on this scan.
Thanks, HappyBear. I am used to having to do all my own research and understand how rare this is. I fully expect to have to teach medical professionals unless it is somebody on the list of doctors mentioned here.
I am not sure I have compression of any veins. I dont have any of the symptoms associated with it that I am aware of. However, I think it is worth looking into. I’ll educate myself on a venogram and the rest of what you said and get myself armed with as many tools as I can. I was avoiding looking into a whole lot about pre and post op until i was certain ES was the problem.
I am hoping I can speak with an ENT surgeon soon that can help guide me through what I need to do, but i fully expect resistance the whole way. As far as I am concerned the whole medical industry needs an overhaul and most people working in it seem to do the bare minimum. Hoping I can find one of the good ones.
Jules, thanks for the reply. I was thinking the same about at least like “getting on the list” because it makes sense to take action now as I will have to wait to see them. I appreciate confirmation that any decent ent would think that the styloids are causing my symptoms.
Just called Dr. Joshua Schindler’s office. Was told I need a referal.
So I called my PCP and set up an appointment with the PA again. Tuesday the 26th at 4:20pm, same time as the last one. Funny coincidence. 
I have a referal to an ENT nearby but I am going to assume they also won’t know how to help me or wont believe me, so I will aim to get another referal asap to docs on the list for Oregon. Might be worth getting a referall for more than 1 just to save myself 2 weeks again.
Im going to call the ENT that I do have a referal for soon.
I need to do much more research but after looking into it briefly it sounds like IJV compression could explain why the arteries on the right side look larger than the ones on the left.
It’s not uncommon to have a dominant internal jugular vein (IJV) i.e. one vein that is substantially larger than its counterpart on the opposite side.
Have you read @Jules post - ES Information: Background, Anatomy, Styloid Length, Angulation, Classic and Vascular - which covers the types of symptoms experienced w/ vascular & non-vascular ES? If you don’t have vascular symptoms then it’s likely what you’ve noticed is simply your dominant IJV.
Awesome, I figured if I didnt have the symptoms then it was unlikely. Good to know I shouldn’t be alarmed by the artery size, thank you.
I haven’t read that one yet. I’d love give it a read though, thanks! Thanks to @Jules for writing it as well.
Update:
Called my pcp and put in a request for a referall to Dr. Schindler. They said they would put my request in to my PA and call me when I had the referall.
Called the ENT I was refered to and was told they would look at my scans and get back to me within a week. I asked if they could make a note to have the Dr look at the styloids - specifically the right one.
Good job being proactive, @Kiriez. If the ENT you’re waiting to see either doesn’t know about ES or is dismissive of it, you shouldn’t waste your time, or his, having an appt. w/ him.
Agree with Isaiah. If you’re not heard, pull up your big boy pants and call the jerk out. I’ve learned to do that with a bunch of “doctors” out in CA. It’s just difficult not to let ones temper get the better.
