Hi all. I am new to this forum! I wanted to quickly share my story with the hopes that you all might have some advice for me. I am a 23 year old recent college graduate that moved to New York City. I’m originally from Miami! When I graduated in May of 2025, I had some sort of choking incident when I felt like i swallowed food wrong and ended up in the ER. They overnighted me and I did an endoscopy and they didn’t find anything. The next few months I worked with GI doctors to not much result. I was prescribed amitryptiline, I did an esophagram a manometry further X-rays. Not much use tho. I also got a CT ordered by my GI doctor but when I moved up to New York it seemed like the pain was more in the upper part of my throat and that I should see an ENT. I then decided to switch to ENTs when I got to New York. I was seeing the head of head and neck surgery at NYU. They put me through the typical route of starting with acid reflux treatment (did that for 3 months to no use). Then I worked with a SPL and went back to him noticing that it was really the hyoid area that was in pain. We tried injections in January on both sides and neither worked. That’s when in February the doctor decided that it might be a muscle thing and sent me to start PT. At that point I decided that I might need to escalate and get a second opinion. I just saw an ENT at Weill Cornell and he was like the good thing is there is medically nothing urgently wrong with you but he was specializing in sinus so he is sending me to another throat ENT. That’s where I am today. Today, I have bad pain in both sides of the hyoid bone. The entire bone is pretty tender and it feels like I am getting strangled all day long. I also now have clicking that I think stems from the Cornus of the hyoid bone. Lastly, I stayed to have pressure issues in my ears which had been so weird. I didn’t know anything about Eagle when I was looking around so I always avoided this website since I thought it was completely separate. To be honest, I don’t know what I have at all but no doctor has helped me even identify what I have. I think it could potentially be Hyoid Bone Syndrome, but I haven’t officially been diagnosed. It’s been a very long and brutal ~9 months. I have tried really hard to keep getting by but it’s really difficult as I am sure many of you know. I am very excited to join this group bc it seems like for the first time I have met people that might know more of how to get in the right places and have the right conversations. I have heard that it is helpful to share 3D imaging of CT scans, which I am working on getting the CT from the hospital and then will try to get it ready to send here.
Hi & welcome here!
We’re not doctors but will happily take a look when you get your images, we might be able to tell you if you’re on the right track! The symptoms you’re describing sound like those of hyoid bone syndrome, but as you mention pressure in your ears, that makes me wonder if your styloids might be involved too, ear pressure can be caused if the styloids compress the internal jugular veins.
We’ve had some members with both ES & HBS, & some with just HBS- unfortunately less doctors treat HBS, & if your styloids are involved as well it may be that you’ll need them shortened too. So whether you want to start off referrals to some doctors straight away, or wait until you get your imaging & let us have a look is up to you, here’s a couple of doctors who do treat HBS:
Dr Cognetti in PA I believe does treat HBS as well as ES, & he does treat Vascular ES too, so he might be a good bet, but he does have a bit of a wait for new patients. Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760
David M Cognetti MD | Jefferson Health
He does do online or phone consults.
Dr. Karuna Dewan, Ochsner LSU Health Shreveport - Academic Medical Center - Specializes in Hyoid Bone Syndrome surgeries
1541 Kings Hwy, Shreveport, Louisiana, 1-318-626-0050
Karuna Dewan, MD | Ochsner LSU Health Needs a PCP referral
Here’s a discussion about her & HBS:
Anyone seen Dr. Dewan? Clicking larynx - General - Living with Eagle
Possibly Dr Chetri K. Chhetri, MD - Otolaryngology - Head & Neck Surgery | UCLA Health not sure if he is still doing Hyoid Bone Syndrome surgery.
Dr. Gerald Burke, UCLA Medical Center, Gerald S. Berke, MD - Otolaryngology - Head & Neck Surgery | UCLA Health , Pioneered the technique for Hyoid Bone Syndrome which Dr. Dewan uses.
Dr. Andrew Vahabzadeh-Hagh, UC San Diego Health, Andrew Vahabzadeh-Hagh, MD | Otolaryngology, Surgery | UC San Diego Health
Does surgery for Hyoid Bone Syndrome
Dr. Phillip Weissbrod, UC San Diego Health, Philip Weissbrod, MD | Otolaryngology, Surgery | UC San Diego Health
Does surgery for Hyoid Bone Syndrome
Dr Coniglio, Rochester, John U. Coniglio, MD | Rochester Regional Health does hyoid bone surgery & works with Dr. Taka Higashimori for VES and C1 shave, also does hyoid trim if needed- not 100% sure if he is still doing surgery so you would need to check that one…
Dr Brad deSilva, OSU Wexner Hospital, Brad DeSilva, MD | Ohio State University Wexner Medical Center He has also done hyoid bone surgery.
Dr Marshall Smith, Salt Lake City (Successful thyroid cartilage surgery on ramblinman but does not do ES surgery) Marshall E. Smith | University of Utah Health
Has published a research paper into clicking of the throat & successful surgery:
Clicking in the throat: cinematic fiction or surgical fact? - PubMed
So you might have to consider travelling if it looks like you do have HBS I’m afraid…
There have been more discussions about HBS, you can always use the search function to look for those.
Hope this helps…
Hi,
I live very close to New York City. I started out with trouble swallowing, strangulation feeling too- I also have nerve pain like pinching and sore throat both sides and the clicking in the throat. It’s been five months & through my research I found eagle syndrome. I had a CT scan and saw through the members here how large my styloids were. But the clicking in the hyoid, and pain when you touch the outside of my hyoid kind of corresponded more with hyoid bone syndrome.
I did go see an eagle syndrome doctor that is recommended in this group he knew nothing about hyoid bone syndrome and he actually kind of balked at the surgery. I did have a virtual visit with the doctor Dewan, (she does see people virtually sometimes) she wanted me to start with the injections in the hyoid, which I see you already had. I went to see the head of voice and swallowing Dr. at Columbia. He would only give me one injection in my hyoid and he was totally unknowledgeable of Eagle syndrome and Hyoid issues. In fact he told me my styloids were not long enough and they’re very long at least 4 cm and he balked at surgery. He said my issues were muscle and is recommending SLP.
I have an appointment with Dr. Cognetti in Pennsylvania for July. He books only once a month for these type of cases eagle and hyoid. I did send my imaging to Dr. Hackman at UNC, who from another member on the Facebook group is working with him for hyoid issues. Dr. Hackman replied that he would trim some calcification that I have in the back of my thyroid hyoid connection and take my styloids, but I’m just not sure that I want to do all that, I’m still kind of deciding but he actually acknowledged that the clicking was coming from calcifications where my thyroid and hyoid connect. I just would prefer to go to a doctor closer to where I live and I’m just not finding anyone..
please let me know if you have any success as NYC is not the place for doctors that understand this condition, unfortunately.
also not 100 but the Dr in Rochester may be retired.
DO physician here, sounds like you may benefit from finding a traditional osteopath in your area who exclusively does osteopathic manipulation. You can look at cranial society or reach out to any osteopathic medical school near you
Thanks for the reply! Funny that we are in a very similar area. I also have clicking and many of the symptoms you described. I am supposed to see another doctor at Weill and one recommended by this forum to see if any are familiar with these issues. I am also going to physical therapy starting tomorrow to see if that helps. My original laryngologist thinks it’s muscle related but I have my hesitations with that thought process. Funny enough, I actually graduated from unc so I was thinking about reaching out to Dr. Hackman once I had the downloaded scan for my CT. I am a little worried in general bc I am honestly not a big fan of surgery. The only reason I am considering it is bc the symptoms are getting to the point where I just can’t live my life normally and it has severely impacted my quality of life. I am scared that surgery is going to just keep moving the target and not solve the issue and the fact that so many doctors keep telling me nothing is wrong is scaring me from surgery. I feel sometimes like I’m just going a little crazy haha. I hope to have my CT downloaded scan soon and hopefully can share with the group here and see if anyone is seeing something none of my original doctors have seen.
Jules, thanks for your reply. The doctors list is very helpful and will try to find someone that I can get on a list to see. It’s a little hard to travel with work, but I am willing to try and find the right person that might now how to help. I have been a little surprised by the lack of knowledge and how doctors have been kinda writing me off as if I should be fine. Hopefully I have a CT scan to post soon! Thanks!
Thanks for the recommendation. I am largely unfamiliar with DOs so I will try to look into this.
@DJflower33 (& @Matt7234) - Dr. Cognetti & Dr. Hackman have very similar levels of experience w/ ES & HBS. It will be interesting to see if Dr. Cognetti’s approach to your situation differs significantly from Dr. Hackman’s. Please let us know after your July appt.
Interesting that Dr. Dewan did a virtual visit for you. We’ve heard she’s hardcore about initial consults being in person (as is Dr. Hackman). I’m glad she didn’t make you travel to see her. I assume her request that you get hyoid injections was for diagnostic purposes? Unfortunately, I suspect that, just as with ES, sometimes the injections help, sometimes they do nothing & sometimes they make symptoms worse so they’re not great for determining one way or another if someone has HBS/ES. Did she offer for you to have a follow-up appt once you had the injections?
In order for you to get full relief from your symptoms, you’ll most likely need to have all the things done that Dr. Hackman suggested. You can choose to have one big surgery or separate surgeries i.e. one for your hyoid/thyroid cartilage then the styloidectomy(ies). As you know, Dr. Hackman will resect both styloids in the same surgery. Dr. Cognetti only does unilateral styloidectomies so you’d see him at least twice for surgery if you get both styloids shortened. I imagine he’d do your hyoid/thyroid cartilage surgery at the same time as one of the styloidectomies.
Dr Dewan kind of said that the injections can sometimes resolve the clicking and pain, as did the Dr Pittman I saw in NYC. Dr Dewan mentioned having 2-3 rounds of shots. Problem is the Dr Pittman could not be convinced to give me shots in both sides because when he palpated the tip of my hyoid only the right side hurt. The shot seems to have done nothing. I feel exactly the same, but from what I understand Dr Dewan says you should try shots. I believe she has had patients want to rush surgery so she is being cautious as well. I am not sure on followup with Dr Dewan. I am not there yet. I actually got moved up on Cognetti’s cancelation list but I was unable to make the appt. I am hoping I can moved up again in April and I will try to get there.
Such a shame you couldn’t make the appointment they offered you, hopefully you’ll get in soon… I agree with @Isaiah_40_31 that the injections might not help everyone the same as those for ES, but good Dr Dewan doesn’t rush into surgery…
For you & @Matt7234 , it’s difficult when there’s overlap of symptoms with both syndromes - there is so much ignorance about ES that many doctors don’t understand the difference surgery can make when done well, so they will be dismissive!
The downside of Dr. Dewan is that she doesn’t do styloidectomies which makes Dr. Cognetti more ideal for you since he does both hyoid & styloid surgeries. I am also glad to learn that she’s conservative & doesn’t just jump into surgery.