Hyoid Bone Syndrome
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.
Does any one have any referrals to doctors in Georgia? If not is there I will travel anywhere I just need help
@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.
@nc27 did u ever find a doctor wheeling to do surgery or where r u at now
@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
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
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
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?
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
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..
Hi, I'm still working on it with the Doctor. So far nothing. Good luck to you.
Peter