Hello! This is my first post here, although I’ve have been browsing for some time now as I try and figure out what my chronic neck pain is.
I’ve had intermittent neck/throat/jaw/ear pain on the left side for about 14 years now (ugh!). I have seen countless doctors about this who have all given me diagnoses that never felt like made complete sense. First was acid reflux, which I was tested and treated for…not it. Then it was TMJ, which does make sense to me as I do have a misaligned bite, but there was still a very odd stabbing pain in my neck and throat that has always felt much deeper than just TMJ issues.
Some of my symptoms:
Stabbing front neck pain radiating to my left ear, back of throat, molars, alongside windpipe, and under chin. Exacerbated by inhaling, leaning forward, laying down, and strenuous activty
Brain fog
Fatigue
Pulsatile Tinnitus
I learned about Eagle Syndrome through TMJ forums and then found this site. This was so eye opening for me! It all made sense, all the pain I’ve been feeling. This could finally be my answer.
I pushed my new ENT for a CT scan so I can finally know once and for all what on earth is going on in my neck. They were hesitant at first, saying ES was too rare, you’d be in constant pain, etc…eventually they sent me for a CT with and without contrast.
Initially, the report came back with no mention of my styloids. Everything looked perfect. What a relief, but I still needed to know what my styloids looked like before I could move on. My doctor said they would call and speak to the radiologst about taking a closer look at my styloids.
Well, the doctor called back yesterday and said the radiologist did not suspect Eagle Syndrome. What should be considered great news immediatly felt like a disappointment to me. Don’t get me wrong, I’m glad that they don’t think I have a condition that requires surgery. But I was so convinced that this was it. Now I am back to square one trying to figure out this pain.
I feel like it’s hard to move on from Eagle Syndrome because when I looked at my images, I thought that’s exactly what I was seeing based on all of my own research and browsing other users scans on this site. I feel so lost on how to proceed…do I get a second opinion? Have others gone through a tough diagnostic process in which they weren’t taken seriously? Is your pain constant, or does it flare up and then go dormant for some time?
I would love to post a few images of my scans when possible for some opinions. Thank you so much for reading, sorry for the long post!
Hi! If you have copies of your images you’re welcome to upload them on here (just make sure you anonymize them first); unfortunately not all radiologists are familiar with ES, there is quite a variation with the ‘average’ length doctors use to assess the styloids, we know that the thickness and the angle also can affect symptoms whereas usually radiologists don’t look at these. So by all means upload them and we can give you an idea whether it’s perhaps worth pursuing…
Yes, others have had difficulty getting diagnosed, some have sent their scans to other doctors for their evaluation, so that’s something you could also consider. The doctors list is in the Doctors Info Section, I think possibly Dr Costantino in NY does video consults, also Dr Cognetti in PA does. I think there’s also an online radiology site which members have sent their scans to.
And yes, other members have found symptoms come & go, sometimes for no obvious reason.
Thank you for your input! I thought I noticed that as well, and yet my radiology report came back unremarkable with normal vasculature. It makes me feel like I’m losing my mind!
I totally agree w/ @Chrickychricky. You have a VERY long right styloid w/ IJV compression on the right & a shorter styloid w/ a section of calcified stylohyoid ligament on the left where the transverse process of C1 is compressing your IJV against your left styloid.
I am continually perplexed that radiologists & doctors would look at styloids like yours & say they are normal!!! YIKES!!
Dr. Costantino is the doctor closest to you to contact w/ Dr. Cognetti being next. Both deal w/ ES w/ IJV compression.
•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056 http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS
This is so validating!
I can’t believe this is such a normal occurrence for so many people on this site. Truly frustrating.
I was surprised to see my right styloid looking as long as it is, as my left side is where I’m mostly symptomatic. I can’t remember ever having pain on the right side.
I do despair, how as @Isaiah_40_31 says a radiologist could look at that & say it’s normal I second @Isaiah_40_31 's opinion on your styloids & compression of the IJVs. Certainly worth seeing an experienced doctor!
Thank you for the encouragement, I will have to make an appt with Dr. Costantino as he’s the one closest to me and I’ve read some great things about him here.
The most troubling and confusing symptom I’ve had is pain in my neck (mostly left side) that will sometimes stretch across the front toward the hyoid region and up to my ear when I inhale. Is this a type of pain anybody has experienced with ES?
Neck pain of all varieties is common w/ ES. I had pain that radiated from my lower thyroid up to my chin. When you inhale your L styloid is likely shifting a bit & hitting the nerve that’s causing your neck pain. ES symptoms seem to come & go so that pain may go away after awhile but something new may start up or an old symptom that’s stopped may start up again. It’s pretty annoying!
It’s incredibly annoying! I will go a month or two without consistent pain and then one day it’ll hit me and linger for a while then suddenly leave as quickly as it came. I can never seem to figure out a trigger but it has been happening to me for at least 14 years and it is beyond frustrating that doctors won’t give me a clear answer!
It is weird how ES symptoms can wax & wane without any obvious cause! Sometimes you can guess what’s caused it- sitting with your neck in a slightly awkward positions, overdoing exercise, cold for example, but sometimes there’s nothing you can put your finger on! Glad that Dr C isn’t too far!
Hola,no te han hecho una medición de las apófisis? Yo también veo una de ellas demasiado larga.No soy médico,pero creo que deberías pedir una segunda opinión.Yo llevo operada hace un mes de las dos apófisis,con un TAC con contraste me valió para medirlas y estirparlas. En mi caso también tenía bastante molestia en oído izquierdo y siempre el cuello muy contracturado.También es importante la inclinación que tengan las apófisis.Te deseo que encuentres pronto una solución.Animo.
@Wilow , because the majority of members here speak English we do usually post like that, feel free to use online translation for posting, I just did to read yours:
Hello, haven’t you had a measurement of the apophyseal processes? I also see one of them being too long. I am not a doctor, but I think you should seek a second opinion. I had been operated on a month ago for both apophyseal processes; a CT scan with contrast was enough to measure and remove them. In my case, I also had quite a bit of discomfort in my left ear and my neck was always very tense. The inclination of the apophyseal processes is also important. I hope you find a solution soon. Good luck.
Thank you for your advice, can I ask who did your surgery, & has it helped with your symptoms?
Hola,me operaron en España.Todavía es pronto para evaluar los resultados.La zona está todavía inflamada,las cicatrices muy recientes… Si he notado que la molestia del oído izquierdo no ha vuelto a aparecer y el cuello ya no me molesta tanto.Tienen que pasar algunos meses para ver si todos mis síntomas han desaparecido o por los menos han disminuido.
Translation:
Hello, I had surgery in Spain. It’s still too early to evaluate the results. The area is still swollen, the scars are very fresh… I have noticed that the discomfort in my left ear hasn’t returned and my neck isn’t bothering me as much anymore. It will take a few months to see if all my symptoms have disappeared or at least lessened.
@Wilow - Por favor, usa translate.google.com u otro traductor para traducir tus publicaciones al inglés para que todos podamos leerlas y entenderlas. Gracias.
Translation:
Please use translate.google.com or another translator to put your posts into English so we can all read and understand them.
Thank you
I hope you continue to heal smoothly & see positive results from your surgery!
Unfortunately the radiologist report did not include any measurements for me as they deemed my images as “unremarkable”. So that leaves me feeling confused and I definitely plan on getting a second opinion very soon!
@Wilow - This is very good news that your left ear pain is gone & your neck is feeling better! I’m so glad you are noticing good results from your surgery. Your neck incisions will take several months to heal & they should gradually disappear & become nearly invisible.
I second 