Hyoid Bone Syndrome

Posted by divinityrose @divinityrose, Oct 30, 2020

Five years ago I was diagnosed with trigemential neuralgia after face pain started and it did seem to match. however, as it progressed some things didn't add up like the pain crossing over both sides of the face.

Additionally as it went on and I began to pay more attention, I had migraine like symptoms.

Then as I began to pay more attention, I noticed it would falre up immediately if sitting on a soft couch or leaning forward, etc and the pain was also originating under my chin often, and extremely tight/tender/painful muscles on each side of the neck and even as it progressed over the years into the collar bones, and breast.

From the get go, I had told them it often started like a muscle cramp up the right side of back of neck and sometimes the occiptal nerve and up over the head like a spike through the occipital nerve and eye. But really perplexted and was ignored by neurologists is how I would continually tell them about the pain in the chin/thyoid area and how if i press on that pain, it would cause instant flare up in nerves in my face and a cold mask sensation across the lower part of my face like wearing a mask across my mouth ear to ear.

I get a clicking in the my throat when I swallow, sometimes when the pain flares up, it feels like something is squeezing my airway. If i Press on the area around just above my adam's apple, i get clicking and the pain all flares up instantly. When it flares up (even without pressing) it often feels like someone has shoved forceps through my skin into the soft area behind my chin upwards toward my mouth and is pinching them closed around the skin and muscle, etc between the points.

Sometimes the base of my tongue would spasm or even lock up. Often times when the pain is starting up it comes first in my teeth and I know the next few days are going to get really bad. And when it's really bad, the gabapentin, baclofen and tramadol do very little except after I've taken several doses by the end of the day and go to sleep.

When I came across hyoid bone syndrome, I couldn't believe it - every symptom I've tried telling neurologists about is listed there to the letter. And yet, no one seems to know about this and so mentioning it to docs just gets me ridiculed or head scratching.

Is anyone aware of doctors that specialize in this or know anything about it at all? I have had an assault to the neck area before. I have been to TMJ doctors who said maybe a little but not enough to need a bite plate. I went to an ENT who stuck a scope down my throat and refused to do an ultrasound or anything and sent me on my way annoyed with me.

I have been going to neurologists for 5 years who just kep handing me meds for trigemenial neuralgia and saying "see you in six months." Once they tried an occipital nerve block which did absolutely nothing to help. The other wanted to crack my skull open and cauterize the TN nerve. But the pain originates in my chin the most and then causes TN branch pain.

I've tried hunting down doctors who have written articles about hyoid bone syndrome only to be told they've retired or specialize in something different.

Appreciate any help or leads.

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

jemccravy44 | @jemccravy44 | Nov 16, 2023

In reply to @notyouravg "My post from another forum in Aug 2020: DO NOT GIVE UP DO NOT STOP SEARCHING..." + (show)

@notyouravg

My post from another forum in Aug 2020:

DO NOT GIVE UP
DO NOT STOP SEARCHING
As of last month, I struggled with a sore throat (on the left side only) for the past two years and I’ve been reading the stories here for about a year now. Everytime I spoke or ate the left side of my throat would just rage with pain. The pain would get progressively worse throughout the day such that, by the end of the day, it would be too painful to speak after a full day of work. Eventually I started to get pain behind my left ear. As I came to learn more about this area of my throat, I started to realize the pain felt like it was coming from what I know know to be the greater cornu of the hyoid bone.

Was not strep. Nothing on xray. Nothing on CT scan. Nothing on MRI. No visual abnormalities inside the throat. Not my voice box. Literally no indication of any abnormality besides the raging pain I experienced everytime I spoke or ate. I honestly thought I was crazy.

All this learned after after a few physicals, ENTs, anti biotics, steroid and anti inflammatory injections, etc over the course of 1.5 years…but still nothing. Until I went to Stanford Hospital here in CA and met Dr. Dewan. As a diagnosis by exclusion (all tests possible had been performed without exception), I was diagnosed with Hyoid Bone Syndrome - a condition affecting the greater cornu of the hyoid bone.

Surgery: I had a hyoid bone recission (remove greater horns) and thyroid cartilage reduction at the end of August 2019 (just had my 30 day post op yay) under Dr. Dewan’s care. After surgery while still at the hospital, Dr. Dewan told me that the ends of my hyoid bone curved inward at 90 degrees, making the surgery a bit more involved, but gave some assurance we might be on he right track, though she had not seen this before.
She also told me that once she had me out, she was able to click my throat...an indicator of hyoid bone syndrome (see reading materials below).

Thank the man above, my wife (by my side the whole way), my family and my surgeon…a month after surgery and I feel amazing. I can talk without pain in my throat or behind my ears. It’s AMAZING. Surgery was intense, but if this trajectory continues wow. I will give a more detailed account in due course, but I wanted to put this out there in case anyone is struggling: a) don’t stop searching and hang in there b) read these stories, they helped me know I’m not alone and to learn about my body and these conditions c) please reach out to me with any questions.

READING MATERIALS:
Here is my collection of what I was able to dig up when I was trying to figure this out; so many google searches and long nights on the internet spinning due to lack of material. I found these resources to be invaluable in learning about the condition and in helping me to realize surgery was the course of action I personally needed to take to solve my issue (and that I wasn’t loco or making the pain up):
1. https://www.researchgate.net/publication/41449944_Anterior_Throat_Pain_Syndromes_Causes_for_Undiagnosed_Craniofacial_Pain - this was my favorite of the bunch. It goes through a bunch of conditions that cause throat pain, Hyoid Bone Syndrome being one of them. Funny enough, the best piece of medical reading I found on the topic for me was this and it’s by a dentist, not an MD

2. This paper https://www.practicalpainmanagement.com/pain/maxillofacial/hyoid-bone-syndrome#:~:text=A%20condition%20characterized%20by%20both,photomicroscopic%20evidence%20of%20insertion%20tendinosis. , by an MD, talks about Hyoid Bone Syndrome from a degenerative muscle condition perspective. While my Hyoid Bone/muscles did not exhibit degeneration (we tested it after they cut out the bone), it’s still super informative and instructive.

3. This paper https://www.uclahealth.org/head-neck-surgery/workfiles/Laryngeal%20Voice%20Research/Articles/2001%20Smith%20Clicking%20in%20the%20throat.pdf refers to Hyoid Bone Syndrome as “click throat” or “click larynx” because it’s a symptom that some folks exhibit. It talks through the symptoms and also evidences several surgical outcomes (via rescission of hyoid bone), all of which eliminated the pain. For me, the positive outcomes kept me optimistic when I was scared pre-surgery and needed a dose of optimism.

4. As opposed to surgery, this paper https://journals.sagepub.com/doi/pdf/10.1177/0145561318823373 talks about injections as a solve for throat pain at the hyoid bone. For what it is worth, I tried injections pre-surgery with no luck. That said, my doctor, and this article, state there are solid outcomes with this approach.

My hope is that anyone trying to solve for mysterious throat pain can read these articles and try to piece things together enough to get in front of the right doctors to solve your pain.

Please reach out to me with any questions and don’t give up, you got this!!!

Jump to this post

Does any one have any referrals to doctors in Georgia? If not is there I will travel anywhere I just need help

Colleen Young, Connect Director | @colleenyoung | Nov 17, 2023

In reply to @jemccravy44 "Will u private message me I tried but it won’t allow me to I want all..." + (show)

@jemccravy44, you will be able to send a private message in a few days. To deter spammers, sending a private message is not permitted the first few days after registration. You can receive private messages however, meaning @notyouravg can send you a private message to which you can respond.

jemccravy44 | @jemccravy44 | Nov 17, 2023

In reply to @nc27 "Thank you so much for all of your information! I really appreciate it! How was recovery?..." + (show)

@nc27 did u ever find a doctor wheeling to do surgery or where r u at now

jemccravy44 | @jemccravy44 | Nov 17, 2023

In reply to @notyouravg "@divinityrose: I often Google hyoid bone syndrome to see if others might be experiencing the symptoms..." + (show)

@notyouravg has any of y’all had issues with your digastric muscle cause I know the pain radiating to the hyoid bone and this attaches right where the stylihoid ligament does how do u tell the difference in the posterior belly of digastric and submandibular gland

summerjasmine | @summerjasmine | Dec 9, 2023

In reply to @notyouravg "My post from another forum in Aug 2020: DO NOT GIVE UP DO NOT STOP SEARCHING..." + (show)

@notyouravg

My post from another forum in Aug 2020:

My hope is that anyone trying to solve for mysterious throat pain can read these articles and try to piece things together enough to get in front of the right doctors to solve your pain.

Please reach out to me with any questions and don’t give up, you got this!!!

Jump to this post

Hi there you wonderful soul!

I have been reading all your posts with my heart in my throat. I’m suffering a lot of the same symptoms and desperate to find answers - many of which you’ve provided. Countless hours scouring the net trying to piece things together led me to you.

My pain started after a chiropractic adjustment that left me in agony. It’s been almost 6 months and I have a twenty month old baby to care for. The whole experience has left me debilitated, but I’m not giving up. I need to find a doctor who can do the right scans and diagnose me. I’m from Sydney Australia. Could you please get in contact with me and let me know your recommendations? I would be so very grateful. I can’t bear suffering like this anymore.

Thank you in advance,

Jas

photoshopqueen | @photoshopqueen | Jan 25 5:00pm

I was poking and prodding my neck because sometimes I feel a clicking sensation when I swallow and I wanted to understand the anatomy and landmarks of why that’s happening. Well… I felt a bony lump (which I now believe is the side of the hyoid bone?? Idk see photo) and I was poking and prodding that lump for awhile and it started hurting. On google, there’s something called hyoid bone syndrome which is diagnosed by chronic tenderness to the hyoid bone area. But I didn’t have any tenderness until I irritated it! Is it possible I have hyoid bone syndrome, or did I just irritate the hyoid? Attaching photo of where I’m poking

Justin McClanahan, Moderator | @JustinMcClanahan | Jan 26 9:04am

In reply to @photoshopqueen "I was poking and prodding my neck because sometimes I feel a clicking sensation when I..." + (show)

Hello @photoshopqueen. I moved your discussion and combined it with one titled, "Hyoid Bone Syndrome" - https://connect.mayoclinic.org/discussion/hyoid-bone-syndrome.

You can read through other members' experiences with being diagnosed with hyoid bone syndrome and some of the symptoms they all experienced as well.

@photoshopqueen, have you sought a medical opinion for these symptoms, in the past or present?

nurismi | @nurismi | Mar 6 8:54pm

Saya juga mengalami hal yg sama kak...apakah kaka punya sudah sudah sembuh? Bhkan saya takut mkn semua mknn sdh 3 bulan dan badan sy sdh kurus..saat menelan sblh kiri ada buny klik tapi bunyi klik kaka ada kayak benjolan tdk turin tapi tdk teraba benjolannya..entahlah perasaan saya atau bgmn

mattk1995 | @mattk1995 | Mar 17 6:17am

Hey, I just wondering how u went on with this problem? Did y ever find any help ? Suffering with some very similar symptoms and this is one of my conclusions too..