Hyoid Bone Syndrome

Posted by divinityrose @divinityrose, Oct 30 12:45pm

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.

Hi @divinityrose, welcome to Mayo Clinic Connect. I had not heard of hyoid bone syndrome before your post today. I did a quick Internet search only to discover that little is written about it. I found a related syndrome called Hyoid muscle dystonia which was discussed at Mayo Clinic Proceedings here: https://mayoclinic.pure.elsevier.com/en/publications/hyoid-muscle-dystonia-a-distinct-focal-dystonia-syndrome

Am I correct in understanding that you haven't been diagnosed officially with hyoid bone syndrome, but upon your research you discovered that your symptoms match closely with HBS, correct? Now you are looking for a specialist who in knowledgeable about this syndrome. Have you considered consulting neurology and/or ENT at Mayo Clinic? At Mayo Clinic you may benefit from their team approach to diagnosing and treating a patient. Here's a quote from the website about the Mayo Clinic approach:
"Your Mayo Clinic team will be hand-picked according to your unique needs. It will likely include specialists within and across departments to evaluate your condition from fresh perspectives. Plus, your team has access to more than 4,700 Mayo Clinic physicians and scientists on three campuses. If there's a question, alternate ideas and emerging research are just a phone call — or hallway — away. At Mayo Clinic, our approach leads to more answers and more happy endings for patients than anywhere else in the world." (https://www.mayoclinic.org/why-choose-mayo-clinic/what-makes-mayo-clinic-different)

Might be worth exploring.

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@colleenyoung

Hi @divinityrose, welcome to Mayo Clinic Connect. I had not heard of hyoid bone syndrome before your post today. I did a quick Internet search only to discover that little is written about it. I found a related syndrome called Hyoid muscle dystonia which was discussed at Mayo Clinic Proceedings here: https://mayoclinic.pure.elsevier.com/en/publications/hyoid-muscle-dystonia-a-distinct-focal-dystonia-syndrome

Am I correct in understanding that you haven't been diagnosed officially with hyoid bone syndrome, but upon your research you discovered that your symptoms match closely with HBS, correct? Now you are looking for a specialist who in knowledgeable about this syndrome. Have you considered consulting neurology and/or ENT at Mayo Clinic? At Mayo Clinic you may benefit from their team approach to diagnosing and treating a patient. Here's a quote from the website about the Mayo Clinic approach:
"Your Mayo Clinic team will be hand-picked according to your unique needs. It will likely include specialists within and across departments to evaluate your condition from fresh perspectives. Plus, your team has access to more than 4,700 Mayo Clinic physicians and scientists on three campuses. If there's a question, alternate ideas and emerging research are just a phone call — or hallway — away. At Mayo Clinic, our approach leads to more answers and more happy endings for patients than anywhere else in the world." (https://www.mayoclinic.org/why-choose-mayo-clinic/what-makes-mayo-clinic-different)

Might be worth exploring.

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I have considered it for sure but I live in Kentucky. For years I have tried to get various doctors to act like a team. It is excruciating and HBS lists everything I have exactly.

No diagnosis yet because no one I have talked to knows what it is.

I am willing to travel.

Thought I would start here and then figure out how to be seen at clinic

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@divinityrose– many of your description sound like a tight SCM muscle that has trigger points. The Steronocleidomastoid muscle connects to the clavicle and up behind the ear but also controls a lot of movement and stability of the head. This tightness can cause a lot of problems and uncomfortable symptoms all throughout the head and neck. You will not feel it at the places it originating from. But most are the tightness just below the skull which sends off nerve response into the occipital and and trigeminal area. Neurologist will only locate the spot you show them. They won’t take the time to help you understand where it’s coming from. I would check, not with western medicine and look more into myofascial release. The part you mentioned under your chin is a muscle that gets very tight/reactive with stress, vision stress, and txting. Look to a physical therapist for postural assessment and musculature imbalance.

Liked by tonyinmi

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@nrd1

@divinityrose– many of your description sound like a tight SCM muscle that has trigger points. The Steronocleidomastoid muscle connects to the clavicle and up behind the ear but also controls a lot of movement and stability of the head. This tightness can cause a lot of problems and uncomfortable symptoms all throughout the head and neck. You will not feel it at the places it originating from. But most are the tightness just below the skull which sends off nerve response into the occipital and and trigeminal area. Neurologist will only locate the spot you show them. They won’t take the time to help you understand where it’s coming from. I would check, not with western medicine and look more into myofascial release. The part you mentioned under your chin is a muscle that gets very tight/reactive with stress, vision stress, and txting. Look to a physical therapist for postural assessment and musculature imbalance.

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Thank you this is both sides. I have been going to both physical therapists and deep tissue massage therapist. I have tried to talk to neurologists about muscular causes and posture causes as I have extremely large chest pulling on everything I am constantly straining against. (Plan to have reduction). Physicaltherapy did not help and they tried dry needling which was unbelievably painful and just had me in tears .

This has been a five year journey of seeing neurologists, pts, rheumatologists, a very rude ENT, massage therapists and even a. Cardiologist because the physical therapist said some symptoms sounded like circulatory (some numbness but I think its from gabapentin)

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@nrd1

@divinityrose– many of your description sound like a tight SCM muscle that has trigger points. The Steronocleidomastoid muscle connects to the clavicle and up behind the ear but also controls a lot of movement and stability of the head. This tightness can cause a lot of problems and uncomfortable symptoms all throughout the head and neck. You will not feel it at the places it originating from. But most are the tightness just below the skull which sends off nerve response into the occipital and and trigeminal area. Neurologist will only locate the spot you show them. They won’t take the time to help you understand where it’s coming from. I would check, not with western medicine and look more into myofascial release. The part you mentioned under your chin is a muscle that gets very tight/reactive with stress, vision stress, and txting. Look to a physical therapist for postural assessment and musculature imbalance.

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And btw I had tried bringing this very suggestion up with my doctors after massage therapist discussed it and no one seems to listen or know what to do with the information

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@divinityrose

And btw I had tried bringing this very suggestion up with my doctors after massage therapist discussed it and no one seems to listen or know what to do with the information

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@divinityrose-that’s great that you already started with physical therapists and the more natural side of things. You mentioned you are straining against your large chest. All of that muscle strain will cause an imbalance. From clavicle all the way up to neck, into head. Forward head posture is literally a pain in your head and face.
I will tell you, the only reason why I am on this site is due to a misdiagnosis from an ENT. So I’m not surprised he was rude annoyed. Just keep in mind if you go to a surgeon, they will only see things in a “box” so to speak of what they can operate on. Zero western medicine doctors will speak to you from a whole body perspective. They will give you pain meds, check mark there box to bill insurance and send you on your way with a patient visit summary just in time to rush in their next patient. Most doctors you go to will know nothing in how to treat pain. They spend very little understanding it and ultimately it will just be another pain med you are prescribed. I feel your frustration with going from doctor to doctor. I will say I always considered myself and still do to be a very holistic person. I would really suggest meeting with Functional Medicine doc or Natural Path. I am not trying to make this sound simple, by any means. Look at your stress levels first. Your daily life. Work and home. What are you fueling your body with? Real nutrients or fake/processed foods. What’s your sleep like. These are all things that you can control. And no doctor can reduce your stress, improve your diet or get you to be active and social. Lack of these are all starters/contributors to inflammation, poor functionality and pain. Your body really wants to work for you. Don’t get frustrated with the process. Just take that energy away from doctors.

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@nrd1

@divinityrose-that’s great that you already started with physical therapists and the more natural side of things. You mentioned you are straining against your large chest. All of that muscle strain will cause an imbalance. From clavicle all the way up to neck, into head. Forward head posture is literally a pain in your head and face.
I will tell you, the only reason why I am on this site is due to a misdiagnosis from an ENT. So I’m not surprised he was rude annoyed. Just keep in mind if you go to a surgeon, they will only see things in a “box” so to speak of what they can operate on. Zero western medicine doctors will speak to you from a whole body perspective. They will give you pain meds, check mark there box to bill insurance and send you on your way with a patient visit summary just in time to rush in their next patient. Most doctors you go to will know nothing in how to treat pain. They spend very little understanding it and ultimately it will just be another pain med you are prescribed. I feel your frustration with going from doctor to doctor. I will say I always considered myself and still do to be a very holistic person. I would really suggest meeting with Functional Medicine doc or Natural Path. I am not trying to make this sound simple, by any means. Look at your stress levels first. Your daily life. Work and home. What are you fueling your body with? Real nutrients or fake/processed foods. What’s your sleep like. These are all things that you can control. And no doctor can reduce your stress, improve your diet or get you to be active and social. Lack of these are all starters/contributors to inflammation, poor functionality and pain. Your body really wants to work for you. Don’t get frustrated with the process. Just take that energy away from doctors.

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Yeah I have done that and yoga. Exercise helps. I have a very small frame and wear 36H so it's just time for surgery with that. It's getting worse every year. Strangely enough my cosmetic surgeon did know about the hyoid bone. If I hold my arms and lift my chest up, I often get instant relief.

I have worked to wean myself down on meds several times but then get a bad cycle (extended period of pain) and have to take more again.

I am not looking for hyoid surgery but would be interested in trying the pain block.

The only holistic thing I haven't tried is acupuncture. Honestly a bit scared to after how bad dry needling was.

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@divinityrose

Yeah I have done that and yoga. Exercise helps. I have a very small frame and wear 36H so it's just time for surgery with that. It's getting worse every year. Strangely enough my cosmetic surgeon did know about the hyoid bone. If I hold my arms and lift my chest up, I often get instant relief.

I have worked to wean myself down on meds several times but then get a bad cycle (extended period of pain) and have to take more again.

I am not looking for hyoid surgery but would be interested in trying the pain block.

The only holistic thing I haven't tried is acupuncture. Honestly a bit scared to after how bad dry needling was.

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@divinityrose-that’s great your cosmetic surgeon understood it and when you elevated your arms you had relief. So perhaps it all is in your straining against your chest. That would possibly explain the pain under your chin too. Acupuncture is far far less painful than dry needling and it can help you rebalance energy. You might find all of this resolves after reduction. I only chimed in here when you said you have seen all kinds of doctors for the pain. I can empathize and just wanted to say that there is a reason we have the most expensive healthcare, the most drugs and the most unhealthy people. This isn’t to doctor bash, but it’s truly because most, not all, do not look at the entire person and are driven by a health care system. Referral after referral and med after med does little for a persons self reliance of how to get better on their own or with the proper education. I was mainly trying to say, save your energy and only put it into things that will make yourself feel better. Rude, careless doctors certainly won’t. Go with your gut, is the best advice even with the body.

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@nrd1

@divinityrose-that’s great your cosmetic surgeon understood it and when you elevated your arms you had relief. So perhaps it all is in your straining against your chest. That would possibly explain the pain under your chin too. Acupuncture is far far less painful than dry needling and it can help you rebalance energy. You might find all of this resolves after reduction. I only chimed in here when you said you have seen all kinds of doctors for the pain. I can empathize and just wanted to say that there is a reason we have the most expensive healthcare, the most drugs and the most unhealthy people. This isn’t to doctor bash, but it’s truly because most, not all, do not look at the entire person and are driven by a health care system. Referral after referral and med after med does little for a persons self reliance of how to get better on their own or with the proper education. I was mainly trying to say, save your energy and only put it into things that will make yourself feel better. Rude, careless doctors certainly won’t. Go with your gut, is the best advice even with the body.

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Thanks so much or your responses. I 100% believe in a mix of holistic approach and dr approach. I had a chiropractor who also uses supplements etc provide a solution that made me feel better than I had in years related to sore joints, etc years ago.

I agree posture and muscles are involved and brought up forward facing posture to my last neurologist. I have been very aggressive in exploring everything I can and looking for answers, which is how I came across a chart of facial pains caused by various muscle or posture or other issues and HBS. Posture issues can also cause the hyoid bone to be pulled down to a lower place than it should be.

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@divinityrose I read your story and you said this seems to come from an injury to your neck. Has anyone done an MRI of your cervical spine? I know from my experience as a cervical spine surgery patient that slight changes in the alignment of the spine can cause strange pains in the neck and head, and muscle spasms can cause shifting of the spine's vertebral bodies, the jaw, and how the skull sits at the top of the spine. I have had the occipital headaches you describe, and a tight jaw on one side. What you might want to consider instead of trying to label this as a diagnosis would be to work with a good physical therapist who does myofascial release and cranial work. You may want to see a spine specialists to either rule out a spine issue or find one, and it may be something that physical therapy could help. There may be a loss of normal curvature in your C spine due to muscle spasms. The chest pain and forward head position you describe possibly could be thoracic outlet syndrome. That is often worse on one side and I have that myself. MFR does wonders for TOS and it might be good to explore that even if you don't know specifically what is causing the problem. Posture is very important if you have TOS. You could see a vascular thoracic surgeon for a TOS diagnosis or a neurologist, but look for those specialists at medical centers that list treatment for thoracic outlet syndrome. TOS is misunderstood and not covered well in med schools, so it is difficult to find a doctor that understands it. Scars and surgical scar tissue as well as injuries create restrictions in the fascia that hold our bodies in an out of alignment position. If I raised my arms or turned my head a certain way, my hands would get blue and cold because I was cutting off the circulation because of TOS. There are compression points between the collar bone and rib cage for TOS and it can pull the scapulas forward and to the side rounding your back. My PT has gently adjusted my hyoid bone a few times. I am much improved because of physical therapy.

Here are some links that may be of interest written for physical therapists in detail. There are several on this page for the shoulder, neck and jaw that you'll want to look at including an article on TOS. https://mskneurology.com/category/jaw-head-neck/

Here is our discussion on Myofascial release. There is a provider search on the MFR website.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Provider search http://mfrtherapists.com/

Liked by tonyinmi

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@jenniferhunter

@divinityrose I read your story and you said this seems to come from an injury to your neck. Has anyone done an MRI of your cervical spine? I know from my experience as a cervical spine surgery patient that slight changes in the alignment of the spine can cause strange pains in the neck and head, and muscle spasms can cause shifting of the spine's vertebral bodies, the jaw, and how the skull sits at the top of the spine. I have had the occipital headaches you describe, and a tight jaw on one side. What you might want to consider instead of trying to label this as a diagnosis would be to work with a good physical therapist who does myofascial release and cranial work. You may want to see a spine specialists to either rule out a spine issue or find one, and it may be something that physical therapy could help. There may be a loss of normal curvature in your C spine due to muscle spasms. The chest pain and forward head position you describe possibly could be thoracic outlet syndrome. That is often worse on one side and I have that myself. MFR does wonders for TOS and it might be good to explore that even if you don't know specifically what is causing the problem. Posture is very important if you have TOS. You could see a vascular thoracic surgeon for a TOS diagnosis or a neurologist, but look for those specialists at medical centers that list treatment for thoracic outlet syndrome. TOS is misunderstood and not covered well in med schools, so it is difficult to find a doctor that understands it. Scars and surgical scar tissue as well as injuries create restrictions in the fascia that hold our bodies in an out of alignment position. If I raised my arms or turned my head a certain way, my hands would get blue and cold because I was cutting off the circulation because of TOS. There are compression points between the collar bone and rib cage for TOS and it can pull the scapulas forward and to the side rounding your back. My PT has gently adjusted my hyoid bone a few times. I am much improved because of physical therapy.

Here are some links that may be of interest written for physical therapists in detail. There are several on this page for the shoulder, neck and jaw that you'll want to look at including an article on TOS. https://mskneurology.com/category/jaw-head-neck/

Here is our discussion on Myofascial release. There is a provider search on the MFR website.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Provider search http://mfrtherapists.com/

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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

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@divinityrose

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

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@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.

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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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