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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.
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Your story sounds very similar, all I can remember is when I twisted my neck really fast after throwing a super heavy bag of garbage out, I felt a big pop in my throat, then slowly symptoms came on and been so for over two years now, been to every doc possible except those who specialize in hyoid, geez much of the medical problems I knew more then the doctors knew, simply because of two years plus research., Im lost on what to do all they do is prescribe all the meds you have and then some, only to be able to fall asleep and then wake up like ok im alright now no problem till i start swallowing or straining my neck getting up.. The only pressure pain I feel is when i push in on the end of the hyoid which can be very painful on the left but not on the right at all when pressing in....any input would be great... I got surgeons who want to cut gpn nerve and more, I dont think that is the solution
And what is the cause of the stinging tongue, mine does cramp up at times but this pain is gotta be the most annoying.. and can the hyoid affect the cheek... would be nice to know if anyone has similar cases to my situation.. I would like to know every possible symptom there is from hyoid problems. Any input would be great.
Welcome @roger278, I think it's really important to research and learn as much as you can which is what I think you are doing now. There is a post by @notyouravg earlier that I'm not sure you have read. It has some really good references that you may find really helpful. Here is a link to the post - https://connect.mayoclinic.org/comment/670386/
Does is sound similar to what you are going through?
Hi everything you are describing I have experienced. As well as a lot of these Dr not being able to help or knowing anything about this kind of pain. My hyoid gets twisted and restricted and the only Dr who has been able to help me are osteopaths. When my osteopath releases and manipulates my hyoid back into the correct position all of these symptoms go away without any medication needed. My favorite osteopath is Virginia Johnson in Los Angeles CA. I hope this helps
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2 ReactionsHi Friend.
My initiation into this most awful painful infliction came by way of an operation. The saliva gland in the left side of neck went haywire and started making sharp stones that cut their way along with the saliva. I could manipulate them along their path. So i was used to sharp things in that area. The stones grew bigger than the tube. Blockage and neck swelling as the gland filled up. It had to come out. (i would go back in an instant if i could). Now i have a scar that frankenstein would be proud of. All was well for a few months, then a sharp jab, just like the stones felt.. then another, now its constant, and getting damn sore, but hard to tell where its coming from. So i go back to the surgeon, is it possible you missed one? MRI showed his work was good. Try the dentist, maybe its tooth related he said. All my wisdom teeth had been removed i was sure it was not that. But fair shout, So of i went. X-rays showed i was right.. nothing. Then the dentist had me moving my tongue in ways you just dont whilst she felt about.. Then i heard, for a brief moment, a squelch / rip noise. So did the dentist. She stopped the examination and i was getting out of the chair to stand. Then BANG a huge pain bomb went of in my head.. I collapsed, knocked a medical trolley over and was saved from falling through a plate glass window by a terrifed nurse. As i hit the ground i felt it.. something almost half inch long and curving, sticking somewhere into my tongue / neck. (From that moment on i have had a constant high pitched noise, it does change pitch from time to time seamingly coming from the centre of my head, and i can hardly feel my lips and chin). Now its serious , off to the hospital. The consultant i saw had read my notes before she saw me.. she had a piece of paper face down on the desk, she asked me to describe what i felt. She had written my answers on this paper, She turned the paper over and ticked off everything i had told her. She then turned her PC monitor for me to see... Hello Hyoid you nasty peavish misery maker.. I have serious pain up into my ear lobe, i get clicking and clacking, if im not careful when eating i can bite myself with it, dont laugh until you tried it, pain round my neck up into the back of my head, deafness which sounds like water in your ear for days, Looking up causes painful mayhem..but above all.. this damn pointy sharp thing i have to keep parked in the best spot in the sore hole it dug itself...Who ever heard of their hyoid? Who ever heard of someone with only 3 saliva glands? Dread to think whats next.
Hope this helps anybody who happens along, likely you got here like i did. In painful exploration.
I have a very similar condition, which has confused and perplexed doctors to know end. With mine, however, it has caused dysphagia - or difficulty swallowing - in addition to many of the issues everyone has listed here. I did get a diagnosis of muscle tension dysphagia after exploring hyoid bone syndrome, reflux, etc, etc. Sitting on surfaces causes a flare up super fast, as does using a computer, or misc other activities.
My biggest advance towards healing happened when I found a myofascial massage therapist. the culprit of all these issues? Stuck, tight, and unbalanced muscles of the next and throat. Specifically, the SCM, scalenes, and muscles of the hyoid. So far, we’ve treated everything but the hyoid, as we’re working outside in, but I’ve had huge relief. Dysphagia is disappearing and more. Out of all the crazy things I thought this could have been, I can’t believe it’s just muscles. Because of the sheer amount of nerves and important structures in the neck (cricopharyngeal for reflux and esophageal pressure for instance), you can get such a wide range of symptoms and pain.
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2 ReactionsHello @jkirchgessner07, Welcome to Connect. Wow! That must have been extremely satisfying to have found a myofascial massage therapist and finally found some answers and relief. You might find this discussion started by @jenniferhunter helpful:
--- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.
Did the doctor who diagnosed you with muscle tension dysphagia suggesting trying myofascial release therapy?
Thanks for the link! I had been seeing a chiropractor for the neck tension and his office just hired a new myofascial specialist. She happened to be someone who had thyroid surgery and went through a lot of neck therapy herself, so she was well-versed in the complications and pains that can happen in the jaw, throat, and neck muscles. It’s taken 3-4 months at this point, to get everything broken up and loose enough to be able to work on the smaller muscles that have actually been the source of the problem.
In the process of this, I did make it to Mayo, as well. My ENT diagnosed me and referred me to a speech pathologist. She did recommend I continue with myofascial and was pleasantly surprised I had already started.
The key moment I remember that took me from swallowing only liquids to swallowing solids again was when the massage therapist was working on the scalene muscles near the thyroid that had somewhat fused together and prevented my hyoid from moving. I felt an audible “pop” and adjustment in my throat when it released and she was amazed at how it all just “broke up”. Since then, I’ve had more similar moments of release and am now where I am today.
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2 ReactionsThese comments have been so helpful, I am suffering from very similar symptoms: clicking + pain when swallowing, pain when touching the hyoid bone area, etc.
Does anyone know of a doctor, chiropractor, or myofascial massage therapist who specializes in this in the NYC area?
Thank you!
Hello I just had surgery at Stanford for a trim down of my thyroid cartilage, which was severely deviated he said. I went in for the clicking in my throat, it’s only been 3 days since surgery but I still feel the click in there. I was wondering if you experienced the same thing? And if you did how long did it take for click to stop. I know it may take a few weeks for swelling to go down and for the click to stop.