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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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I’ve have this mucus also. I thought it was overactive salivary glands. Various doctors have said it comes from smoking. Some mornings I waking up foaming at the mouth. It’s not stomach acid. I keep thinking it’s a bad case of thrush. Interested to know how things work out for you.
I see a neuro on July 16 - it’s so painful and frustrating.
i know what youre going thru let me tell u my story is been a year of so much pain my daughter kick me directly to my troath i been in so much pain i already been to 5 ent doctors they dont care give med for acid reflux ,i keep telling them i have pain when i bend over even makes me cough,also i am in bed and my daughter jumps i can feel the pain ,also when i talk and swallow i just feel something is not where it should be i am desperate and some ENT doctors suck,
to be honest i think i have my hioyd bone dislocated but the doctors dont focus on that keep saying is acid reflux i am so disappointed i already see like 6 ENT doc some of them is more the waiting time that what last the consultation,mean while i am in every minute of my life
Hello @contrera and welcome to Mayo Clinic Connect. I am sorry to read of your trying year and the pain you are experiencing.
You mention that you feel you may have hyoid bone syndrome and that you have shared that with your ENT doctors. Can you share a bit more on why the believe that is not the case and maybe why you feel it is possible?
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1 ReactionFor everyone, I have the same issues. However, many people with these symptoms can also have Eagles Syndrome. I had Eagles Syndrome and needed surgery to remove the temporal styloids and stylohyoid ligaments to the hyoid bone. I was unable to move my head and in constant pain. I had this bilaterally. I also have a jaw that slides to the left due to a longer jaw bone socket on one side than the other. After the surgeries for Eagles,I am better,but I still have all the symptoms of hyoid bone syndrome. I do not know if this is because of the stress on my jaw or the surgery on the left side required cutting the digastric and SCM muscles. Every bit of the pain is there clavicle ear, facial shoulder breast and shoulder blade. That said, if you have Eagles Syndrome, you may also have these symptoms and after surgery they may go away, I think that my left side is caused by the congenital deformity of the jaw. I presently have a great PT who specializes in intracranial and temporal mandibular therapy, and he can get me feeling pretty good for a few weeks at a time, however, I do not expect any much better. If you have not been tested and treated for Eagles syndrome, then you may actually be one of the many who can be cured if that is the primary problem. For me I am better, but suffer a lot. I am going to ask my pain management doctor if he can do anything that might help for longer term. Wish you all well, I will not be on again much too much pain, but good luck. Try the website http://www.livingwitheagle.org if you have not done so yet. For those considiering breast reduction. I had that done and it helped ,my posture,but I cannot say how much it has helped my pain overall. I feel better when walking so I am so grateful to be able to walk better and straighter.
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1 ReactionI’m still suffering but being dehydrated or tired seems to make it worse. I have also wondered about the thymus. If somehow that can cause nerve irritation or muscle spasms. Possibly compression of a blood vessel? For me the pain centers around my neck. My cheeks or even the roof of my mouth will get severe sharp pains, I had a 2 hour attack and passed out. Awful. Then are still running tests. Honestly with something this severe - i would think they would do everything stat. Oh —- nitro tabs don’t help so I prob not silent Angina I had hope that was it but alas the beat goes on ... on and on.
So I saw the neuro - she said neuropathic pain - she asked if I had a therapist ( I am worried that means live with it and get a therapist). My problem is not the emotional fall out - I do not want to have pain this horrible. Now I try warnings before an episode, Deep achey stabbing pain that gets more and more intense and spreads until I reach a full blown attack - then I need to wait through the agony - passed out once. If it starts when I am asleep - I’ll wake up with the full blown attack. However - if i catch it early and slowly drink water I can get the throat muscle to relax and the attack will stop, But it will restart several times, I think there is an underlying problems - she thinks that unlikely.
Having MRI and CTA Former to check cervical spinal nerves
Latter to check for blood vessel dissections or other vascular anomalies
I still need to be vigilant and keep track of anything that seems relevant.
Hi divinityrose,
Allow me to introduce myself, I am KariMorganPhilippot where I reside in Winnipeg, Manitoba Canada. I am 46 years old and I was diagnosed last year with Thyroid Cancer, Hashimotos disease along with Hypothyroidism where I underwent numerous testing that resulted in the removal of my entire right thyroid due to papillary carcinoma. I also suffer from severe
Fybromyalgia and TMJ discomfort with Dysphagia along with numerous other ailments too many to explain here. Because I am having difficulty with my voice Cancer Care referred me to a Speech Language Pathologist for voice training where she discovered that I was suffering from hyoid bone syndrome where she is fully trained on identifying this syndrome along with many other ailments relating to speech and swallowing. I was advised that it was a direct result from my major car accident 11 years ago with extreme trauma to my neck. I was shocked to learn about Hyoid Bone Syndrome which truly was an eye opener since it explains everything that I have been experiencing for many years exactly to a T where I have been in voice training for around 6 months now therefore my recommendation to you would be to obtain a referral to see a Speech
Language Pathologist who can explain this in great detail and provide you with a proper diagnosis. I hope and pray this helps you!
Sincerely Kari
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1 ReactionHello Kari @karimorganphilippot, Welcome to Connect. Thank you for sharing what you have learned and how it has helped you with your hyoid bone syndrome. It is extremely helpful when patients like yourself can share their personal experience with other members.
Do you mind sharing how you found Connect?
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