Hello everyone, I am 26 years old (June 12th) and I was recently diagnosed with ES. My styloid processes on both sides are longer than 6cm.
I cannot tell you how happy I am to finally know what is wrong and have a proper diagnosis, however, I’m terrified. I have been having ENT issues since for the past few years but didn’t exactly notice they were related. In the past 6 months (at least) I’ve had this AWFUL feeling like something is stuck in my throat, truly no one could figure out what was wrong. I had ultrasounds, x-rays, and they still didn’t find it. Recently my ear issues have gotten worse and I’ve had ringing in my ears for a several months as well. I also have eye pain when I turn my head a certain way and try to look up. I have a terrible like pain from my neck almost into my ear. I would go to doctors and they looked at me like I was crazy, I would say that I had something stuck in my throat and they were like… uh nothing is there.
Is my bone going to fracture and slice my artery? How did it get this long? How does this happen? How did they not find this when I had CT scans done as a kid? I recently had wisdom teeth removed a few years ago, did that cause this? I have so many questions, and no answers! I have a follow up with the ENT on Wednesday so hopefully I can get more answers then. Luckily I am in North Carolina and there are very experienced doctors in the area, however, I really need help finding someone who has experience and positive results after surgery! I REALLY don’t want to get surgery, but, I imagine that I will have to.
Can everyone tell me how long yours were? Should I be careful when I move my head certain ways?
Sorry for rabbling!!!
Hello everyone, I am 26 years old (June 12th) and I was recently diagnosed with ES. My styloid processes on both sides are longer than 6cm.
Given your symptoms and length of styloids, surgery would likely be your best option if you want to feel better. 6cm is pretty long on average. Mine were about 3.5. Usually anything above 2.5cm is “eagles” territory. Many of your symptoms are common to many of us although everyone can vary.
Its unlikely having your wisdom teeth out caused this. No one doctor has really figured out what causes Eagles. There are alot of theories such as a past history of whiplash or tonsils removed. A big percentage have had a history of TMJ. Some people may have calcium imbalances that causes calcium overgrowth. Many of us will never know the cause.
If your getting eye pain in certain positions, you might not want to do certain sports (such as sking) or aggressive chiropractic treatment. Listen to your body.
In the hands of an experienced surgeon, this surgery is really not all that bad and the recovery for the most part easy. Usually first 3 weeks you take it easy and by week 12, doing alright. Some people have a harder time with recovery. If you look at al the threads here, you will learn alot.
As for not seeing these on a CT early in your life, they may have progressively grown over time although you are pretty young to have them this long but even today many radiologists ignore elongated styloids and only doctors that are experienced or believe in ES (and know symptoms) will notice them on the CT scans. Many of us have taken years to get a diagnosis. Took me 5 years and it took one doctor who I told I felt I had a bone in my throat (classic eagles symptom), told me about possible eagles.
Getting diagnosed is half the battle. You are in the right place to learn how to deal with this and get better.
Snapple2020 gave you great information. Here are a couple of links to long posts which Jules wrote about ES symptoms & possible causes. They are very thorough & include links to research papers that back up the information she presents.
I had my ES surgeries in 2014 & 2015. I finally picked up copies of my radiology report this week as I’ve long wondered about my styloid lengths. All it said was my styloids were elongated almost to my hyoid bone. No lengths were mentioned. Guess I’ll never know!
I wouldn’t panic about your head movement. From the symptoms you’ve mentioned it doesn’t sound like you have vascular ES. Many people don’t & I didn’t. As Snapple mentioned, for your own comfort, don’t put your head in positions that cause you pain, & avoid sports activities (soccer, skiing, etc) where you could injure your neck (including chiropractic adjustments of your neck).
Dr. Hackman is a good & experienced surgeon in your state. He would be a good resource foe you even though you may need to travel to see him.
I’m glad you’re diagnosed as your next steps will lead you toward recovery.
Thank you so much Snapple for all the amazing information!
It gives me a bit of peace of mind knowing that I am not crazy and that I am not just a hypochondriac but that everything I have been feeling is REAL.
So this was the official findings for the Eagle Syndrome.
Additional Findings: Elongated bilateral styloid processes each measuring greater than 6 cm and extending inferiorly to just above the lateral cornea of the hyoid.
I am not sure what exactly to make from it, but I’ve been trying to get in contact with some surgeons in the U.S…
I also found a photo of my my mouth before the wisdom teeth removal, I was trying to compare it to those of dentists that have been able to see the process in the image but clearly I am not a doctor and I couldn’t really see much.
Again, thank you so much for just replying and letting me know that I am not alone.
Glad that you’ve found us, & that you have an answer for your pain & symptoms, but not pleased for you to have ES obvs!
Radiologists & doctors don’t always differentiate between elongated styloid processes, & calcified stylo-hyoid ligaments, so not clear from your repost which yours are- as it mentions the calcification extends to just above the cornu of hyoid, it could be that it’s the ligaments which are calcified. It doesn’t really make much difference though, as long as the surgeon removes everything that’s calcified!
It is very, very rare for the bone to pierce an artery, I hope that this reassures you. Some of your symptoms do sound as if there is compression of blood vessels (vascular ES), for example the eye pain in certain positions, although this could be from a nerve being compressed. Unfortunately surgery is the only cure, although there are treatments which can help temporarily- nerve pain medications and steroid / lidocaine injections into the tonsillar region for example. There’s info about that in the Newbies Guide Section.
Snapple’s given you info about the possible causes, often we don’t know…& what to avoid as well for now.
Dr Hackman in NC has done quite a few surgeries for members, you could use the search function & have a look for mentions in the past discussions.
My styloids were 4cms, & compressing the jugular veins both sides. I had 2 surgeries, with really good results, 5 & 6 years ago now.
Mine are that long now i actually trip over them, I have grown a beard and let my hair grow, a girl in the super market asked her mother if I was a mammoth.
When we have a party I sit still and my friends throw rubber rings at me, the winner is the one who gets most rubber rings on one of my bones
I can core an apple on the right on now, pick locks, hang a flag from it at a foot ball match(but don’t like football so that doesn’t count)
I am so glad that I was forced into letting them grow, remember the movie Elephant Man?
I am mammoth man, from the 4th world country of Ireland.
It is a certified 18 movie due to the amount of swearing and cursing.
Seriously though, you have nothing to be terrified about, welcome to the 4% club, in this club we are tougher, harder than the Hells Angels 1% club
I just had styloid surgery with Dr. Trevor Hackman at UNC Health in Chapel Hill. He is an amazing surgeon and truly an expert in styloid removal. I traveled from Florida to see him. The day after surgery, I was eating regular food in the restaurant of the hotel we stayed in. The surgery was not bad and recovery has been pretty easy. I think scarring will be minimal - he made my incisions like he was doing a facelift - cutting along the junction of ear and jawline.
I am 1 week out from surgery and have been out and about to eat and shop and have done some light house and office work. Still having some pain but not nearly as bad as I expected. Don’t be afraid of surgery, especially since you have a really good surgeon and hospital in your home state.
Thank you so much Jules! I am so thankful for this forum! Honestly it’s REALLY nice to have people believe me and actually understand that what I am feeling is 100% there.
I had to leave work today because I was in SO much pain, my left ear feels like an ice pick is stabbing into it from my neck. I am also having a increasing issues with speaking and swallowing (which I wasn’t having trouble with for awhile).
Today I called Dr. Trevor G. Hackman, they weren’t able to answer at this time (I’m sure they’re busy) but I was able to leave a very detailed message (about 9 minutes long! lol) I may have cried a little, I get so emotional and I am in so much pain.
I truly just want to get this surgery and live my life.
I’m so happy that you have gotten yours removed and am very pleased to know that you have had really good results as well!!
Again, thank you so so much for everything you do on this website and just you for being an amazing heartfelt person.
I was told by a friend that I am a reincarnation of an Eagle and that I am a superhero lol.
Do you make money from being mammoth man?
For the past several months I complained to my coworkers that I felt like my throat was expanding and I was becoming a reptile of some sort and gaining gills!
Thank you so so much!!
I literally just called Dr. Hackman (pretty funny name for what he does lol), I have follow up ENT tomorrow and scheduling with Dr. Hackman.
Please keep me updated on how your recovery goes!
The stabbing ice pick pain you describe is a classic Glossopharyngeal Neuralgia symptom- ES is a known cause of GPN. Nerve pain medications can help with that- if you ask your ENT about that hopefully they can prescribe something for you. There’s some info about that in the Newbies Guide Section.
Hope your appt goes okay tomorrow.
Dr. Trevor Hackman did mine. He is the most experienced in NC. Well one of the most on the southeast coast. He is the best surgeon/ Dr. I’ve ever had and I’ve had a lot. He is trained and skilled in so many areas including vascular. He is out of town until August 1st so I would ask to speak to his scheduler to see what they need and possibly get you in. Best of Luck!
@optimistic ~ I really wish moderating was a paid job because I think Ben’s Friends would hire you as the ES Forum comic relief. I/we’ve so appreciated your ability to see humor in the midst of your pain & exceedingly frustrating medical delay.
So glad your appointment is finally drawing nigh. Be your screen-name-sake. I will be praying that all will go smoothly & perfectly.
Oh no! I understand though. I just am in so much pain… I also REALLY don’t want to take pills, I overdosed when I was in high school and I really don’t want to take any medicine, I just want surgery and for it to be done with! But I know the world doesn’t revolve around me and sadly this is going to take some time.
I also have one more question for anyone, maybe @Isaiah_40_31 knows, but one thing that I have been having for several years that no one has ever been able to figure out, is spitting up blood. It has been an ongoing but not severe occurrence. Probably more out there than the other symptoms but just wondering.
If only my Eagle superhero powers were working.
Have you had an upper GI scope to check your esophagus & stomach lining? That would be my first suggestion. This would insure that nothing is going on in those areas that is causing the blood you’re seeing. I actually had this done before I knew I had ES because I was choking on my food & whatever I drank & thought maybe something was up w/ my esophagus. My esophagus was fine, but I had some small ulcers in my stomach (asymptomatic). It was a couple of years later that other symptoms surfaced that led to my ES diagnosis.
If all is clear in those areas, there is a very small chance that because your styloids are so long, they’re putting pressure on or have abraded some small capillary or vessel in your deeper throat area that is causing a small amount of bleeding & that is what’s coming up.
I had surgery on Monday June 28 with Dr Hackman. I had a double styloidectomy and he cut sides of neck and in front if both ears. Great patient care by everyone from preop to postop. I did have to stay overnight to be monitored and i had left eye pain but told that is normal. And I had a crooked smile and weak eye but should clear up. They removed the drains late morning the day I was discharged and I was allowed to go home. Had some issues swallowing but other than that everything seems okay and the headache I had for several months was gone when I woke up from surgery and hasn’t returned. Had my followup July 13 and I’m still getting better but after over two years of symptoms I can now turn my head again and done have a lot of symptoms. Highly recommend Dr. Hackman and the entire team at UNC at chapel hill. My Styloids were 4 and 3.5 I believe.
That is a fantastic report! I’m so glad for how much your surgery has helped you already. Healing can be a bit forward then backward but goes forward again. Patience is key. You’re doing great! In a couple of months you should feel pretty normal again but the irritated nerves may take some months longer to fully recover.
do you have any information about calcium imbalances and eagles syndrome? I am constantly craving calcium rich foods! I had extra teeth removed as a teenager and think eagles is connected to my body producing extra bone … possibly because of a calcium imbalance? Interesting
Glad that you’ve had surgery & it sounds like your symptoms are improving…that’s really good to hear, praying your recovery will go well
If you do a search on the forum there have been a few discussions- not necessarily answers but you might find it interesting, here’s a few links: