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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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Thank you for that information and the links. I have been to neurologists, a spine specialist, and physical therapists (and caridologists rheumatologists and oral surgeons/tmj specialists) and had ct scans, mris, emgs, and xrays although no one has looked at the hyoid bone. The neck is straighter than it should be but evidently not enough for them to have much concern. They mentioned i could let them know if I wanted to look at pain management but then when I went back to talk about it the doc was like nah - and it was focused more on neck pain rather than the excruciating pain in my face, under my chin.
I will look more into TOS, because the weight of my chest is definitely rounding my back and shoulders. The physical therapy I've done multiple times did not do much for me.
At this point, I've seen many different specialists to try to rule out what the causes may be and there hasn't been a definitive answer beyond trigemenial neuralgia
@divinityrose You are welcome. As I said TOS is misunderstood and you have a lot of the symptoms. I had carpal tunnel surgery and they missed TOS and it took a while before I found a doctor who understood TOS. The good thing about MFR therapy is that it is not traditional PT. It is hands on and the therapist will press into a tight spot and then push a direction to get a shearing force, and hold it and wait for the release. They go to the barrier and wait. When it releases, they adjust and follow the direction. It will take many sessions to resolve a big problem. My thoracic surgeon told me he expected it would take 2 to 3 years of MFR therapy. You don't need a diagnosis of TOS to do MFR unless your insurance requires it, but you'll need a doctor to sign scripts for therapy. There are some videos showing John Barnes demonstrating his methods and explaining. Bones will go where the muscles tell them to go, and if the muscles and fascia are restricted, it holds the body with misalignment and it can close down the small spaces where nerves pass through. Look for an expert level MFR provider.
I'm not sure where to post this but I will start here and please forward it to anyone that might be interested. I will do excerpts from an article in the Minneapolis Star/Tribune in the science section on Sunday. I'm hoping that this might help those who are speaking about the difficulty with mucous, and not knowing where it is coming from.
A team of researchers in the Netherlands have discovered what may be a set of previously unidentified organs: a pair of a large salivary glands. They lurk in the nook where are the nasal cavity meets the throat. If the findings are confirmed, this hidden wellspring of spit could mark the first identification of its kind in about three centuries. Dr. Mattthijs Valstar, a surgeon and researcher at the Netherlands Cancer Institute is an author on the study. The study was published in the Journal Radiotherapy and Oncology, it was a small. It examined a limited patient population but it seems like they may be onto something. If it's really good it may change the way we look at disease in this region. Valstar and his colleagues who usually study data from people with prostate cancer didn't set out on a treasure hunt for unidentified spit glands but the structures are important to researchers and doctors who deal in oncology. Salivary glands produce about a quart of spit each day. It lubricates the mouth, making it easier to speak and swallow. The researchers found the unfamiliar structures dead center in the head: a duo of flat, spindly glands, a couple of inches in length, draped discreetly over the tubes that connect the ears to the throat. The new glands were also hooked up to large draining ducts –a hint that they were funneling fluid from one place to another.
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1 ReactionHey
Iam also going through the same issue.
I visited many doctors , took many tests but no one seems to understand whats going on. They think its GERD. But its not. I took medications, did acupuncture too but no use. My dentist told me its Tmj. I started using night guards. Even thats of no use. Finally i figured out its something to do with my hyoid muscles. So i will be soon visiting a craniosacral therapist. I would suggest you to do the same. Hope this helps.
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1 Reaction@happy123 Welcome to Mayo Clinic Connect.
Would you give us an update after you see the craniosacral therapist?
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1 ReactionI have the exact same problem. These attacks are horrible. The pain is in my ear, face, under or behind my tongue, teeth, under my jaw, neck and sternum. It’s been a year since the attacks started and I never know when they will strike. I have been to a bunch of doctors and eventually they thought it was variant angina - but the meds do nit seem to work (nitro when the episodes are active and a calcium channel blocker daily for prevention). The strange thing is that the location of the pain does not fit anything except hyoid bone syndrome. Thud describes it perfectly. I could have multiple attacks in a week or go a couples months without one. The can last minutes to hours. The pain is debilitating. It’s intense, stabbing, aching pain. It also seems to move around with some areas getting more and less painful. Hope you check thus thread. It’s been 6 months so perhaps you were able to find someone to check for thus syndrome.
Lynn
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1 ReactionHi Lynn, welcome to Mayo Clinic Connect. Have you been diagnosed with hyoid bone syndrome? What therapy or treatments help you?
Nope - it’s just the only thing that fits...
Lynn, I'll be interested what you learn from your doctor when you have a chance to discuss this possible diagnosis with them.
Yeah - it’s non stop doctors. Waiting and waiting. Unusual problems are so frustrating.
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