So, first off, I would like to say thank you to the wonderful people who frequent this forum! When I discovered this group around two months ago I was terrified. I had endured symptoms dating back to 2013 and they had reached a point where I had found myself seeking answers and care once again. Luckily for me a radiologist had made a point to highlight the styloid process being exceptionally elongated. Armed with that bit of knowledge I found out about E.S. and subsequently this forum. Armed with the information and guidance from this group I pushed for a referral to someone who could actually give me answers rather than placations. I was referred to Dr. Paniello at Barnes Jewish in St. Louis Mo. He looked at everything I had previously had done and did his own tests to determine the extent of the E.S. It turns out that my right side was fully calcified, 7 cm long, and the left side is elongated with partial calcification. It was compressing the bundle of vitals running up the right side of the neck (further explanation in many other conversations here) and he wanted to operate there a week later. Now, just under two weeks post op, I feel incredibly better! Still have some soreness and the incision has healing to do but the head pressure and many of the other horrible symptoms have been alleviated (still some tinnitus). I have said much of this in other posts but I wanted to consolidate it all to one place. My hope is that someone else coming upon this forum may read this post and know that relief is possible. You are in the right place my friend! Thank you again to the wonderful people of this forum for the help, guidance, information, and support. First pic is today. Second pic is 5 days post op. Third pic is culprit.
WOW! That’s one very impressive styloid @Dakotank! I’m so glad it’s outta there!! I’m also very thankful for a new doctor to add to our list for your state as up to now, we haven’t had anyone reliable to refer our members to.
I will add Dr. Paniello’s name to our doctors list. Would you please provide his contact info as that will make it easier to add.
Your incision looks really good & your recovery sounds like it’s progressing nicely so far. You are still in early days though & may find symptoms will come & go a bit over the next several months as healing moves forward. You may also find that the symptoms your remaining styloid cause will ramp up as the first side recovers. We always hope that doesn’t happen, but it isn’t uncommon.
Thx for your great update & pics. 
I thought i put his info in another post but if not I’ll gladly add it to here. Thank you for cautionary warning. I have noticed a few things coming and going but I’m just more excited to feel any relief at this point. As always Thank you!
I can look him up online. Just don’t have my computer for a few days & hate searching Google on my phone. 
So pleased that you’re feeling better already, that’s great news! Just take it steady & don’t rush your recovery, thanks for letting us know how you’re doing & your doctor’s name 
I added Dr. Paniello’s name to our list w/ the website info. Thx so much for your help!
Hi Dakotank, Thanks for your post and the pics. Its really interesting. Glad everything seems to be working out good for you. Great Stuff. I have ES and I am waiting to see Mr Axom in Cambridge England to see if he can help me. Fingers crossed. I hope you dont mind but I have a question for you. Before you had the styloid removed, could you feel the things sticking in you in any way ?. I cant with mine, and its creating a bit of doubt in my mind although my CT Scan says both my calcified styloids reach down to my C vertebrate. I suffer unbearably so with ear pain,Tinitus and headaches. Obviously Mr Axom should be able to advise me but its good to hear from fellow sufferers like yourself. Thanks again, All the Best. Sparky.
Wow thats great …happy healing , praying for continue reduction of discomfort
I don’t recall having the feeling of anything sticking in my throat. I did have an intermittent sore throat though. My pain was largely on the front side of my neck to start with then later in my face, shoulders, ears, etc., as ES progressed. A number of our members have NOT had the feeling of something poking them in the throat.
I thought i had tumor at first. I didn’t feel a sticking but more that there was SOMETHING in there. I had no idea of ES at that time so tumor is the default through ignorance. Depending on the body type you have it may be different. I just recently lost a lot of weight(65lbs) so my neck is really slim and tight. Externally it could be felt, or rather the raised muscle and other tissue could be felt. To me it was obvious, to doctors who don’t regularly see you and know you as intimately as yourself, not even visible. The one thing I have learned from this page more than anything though, is that every ES case is as unique as the person experiencing it. The core symptoms are prevalent but the fine details very for each of us. I’m in the untied states so when we see Cambridge we assume high education. Is Dr. Axom an ENT or just your normal doctor?
Thank you!
This was extremely well put and you are exactly correct! Each individual is unique in what they experience! Everything you said was spot on and I can completely relate to your mind going to a tumor my mind went there too and that’s what all the doctors thought with me at first too!
Mr Axon is an experienced ENT Surgeon at Cambridge, England, with a special interest in Eagle Syndrome. I found out about him through this website. Thank goodness I did, otherwise I don’t know what I would have done . Most ENT doctors in the UK are not experienced with ES.
I was originally diagnosed by a different ENT Doctor who then referred me on to Mr Axon. If Mr Axon cant sort me out, nobody will. I will keep you all posted how I get on when I see him next month.
Thank you!
I’m glad he has some experience. That is really important and comforting!
I am in St. Louis, and have bilateral ES. Was referred to Dr. Paniello, but just have made an appointment yet. I did/do have the feeling of something stuck in my throat, and problems swallowing food sometimes. Also, the reason I got a CT at Barnes was because I could actually feel a lump in the front of my throat. The results said: “Consistent with Eagle Syndrome.” I assumed that’s what I had, because in 2008 a dentist In was working for said it sounded like ES. All of the symptoms. In Jan. of 2022, I finally got a definitive dignosis. Did you really like, and feel good with Dr. Paniello? I hope your result has been successful.
Thanks, Kathy C.
What a HUGE relief this must be! Congratulations for finding the culprit and a good surgeon. Wonderful news!
@kcassity1955 - We have recently heard that Dr. Paniello is no longer doing ES surgeries. It’s worthwhile calling to check on that, but I want to forewarn you that it is a possibility. Since he’s the only good ES surgeon we know of in your state, you may need to travel out of state to see someone experienced. If this is the case, I can highly recommend Dr. Cognetti in Philadelphia, PA or Dr. Hackman in Chapel Hill, NC.
You can try to make an appt. to see Dr. Paniello for a “constantly sore throat”, for example, w/o saying you’ve been diagnosed w/ ES, & once you’ve gotten in to see him, you can tell him you have suspected ES & ask if he’ll do surgery or refer you to someone who will. We’ve suggested that strategy to a few of our members who wanted to see doctors on our list who claimed they were no longer doing ES surgery but still seemed to be doing it intermittently.