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Has anyone heard of Hyoid bone syndrome?
I'm a thirty year old woman who has had an increasingly distressting problem with my neck. It's been a problem since my early teens. The very first time 'it' happened I was yawning and stretching at the same time whilst lying down. I felt something pop and move in my neck to the right of the thyroid and jumped up and tried to swallow. The pain was unbearable. Breathing hurt, moving my head hurt, the pain was spreading up through my jaw and head and down to my shoulder. I tried to speak but the pain was too bad. I couldn't physicaly cry as it hurt too much. I honestly thought I'd broken something in my neck and I thought maybe I was going to die. I tried to massage the area, to push whatever it was back with my hand but couldn't and it hurt to touch my neck. I felt like my neck was getting tighter and absolute panic set in. I had the urge to swallow but it was terribly painfull. I decided to try and foce it back by swallowing, so although it was incredibly painfull, I concentrated and did big forcefull swallows. After a few goes, I felt it pop back, and the pain subsided. I was very frightened but just gratefull it had gone. I figured it was a one off, and that I'd never stretch and yawn at the same time again. I never have. Unfortunatley, it turned out not to be a one off and my neck has never been the same since. It happened throughout my teens and early twenties, usually caused by yawning or straining my neck (I dread going to the hairdressers). I have been left terrified of yawning, plus the problem is much more frequent and seems to 'go' much more easily these days. It has gone when I've been laughng, talking, even when I've been sat stationary and has happened in my sleep waking me. I also find that most of the time I have almost a pulling sensation in my neck on the right hand side. I find that I have a small window of opportunity where I can get it back when it pops. If I don't manage to do it straight away, it becomes the full blown problem and panic sets in which does not help. I can sometimes push it back with my hand, but if I cannot do that then I have to do the forced swallowing thing which is very difficult and painfull. I have lived with this for almost two decades, with sometimes it lasting seconds, sometimes, minutes to hours, the longest period being three days. Even though I know that at some point 'it' will go back, the panic I feel is always the same. I cannot describe the pain, I have other bones that dislocate and they have nothing on this. I cannot describe the level of panic that I feel. I think partly due to the pain and because it affects such basic things as breathing. I have to concentrate on everything, breathing, movement and usually go to a room on my own as I cannot concentrate when others are around, and it's impossible to explain what's going on, especially when it hurts to speak. I have had the same GP (basic doctor) throughout this time period. I first went to see her as a teen. I have been to see her many times, and other GP's with her and them dismising it as a non serious problem. She believed that it was muscle cramps. She gave me coedine and diazepam, which take the very slight edge off it and although I'd rather have it than not, I wouldn't go as far as to say they help. I've been to A&E many times with this but they can never do anything as my doctor is aware of the problem and gives me medication for it. I went to an ENT years ago who put a camera down my nose and into my throat, and did an Xray. They said everything was fine and I shouldn't be complaining. It recently happened at my best friend's wedding, where I was a bridesmaid and that was the final straw for me. I'd had enough of it affecting my life. For it to affect the biggest day in hers was not acceptable to me. I went back to my GP, said I'd had enough and that I want it looking into further. She sent me to a neuroligist who sait that he didn't think it was his area, and he believed that it was a problem with the Hyoid bone. He said that he's never heard of this before. This is a comment I've come accross many times during my suffering. Because they haven't heard of it it's obviously not serious and may not even exist. The neurologist has suggested that my GP send me to another ENT surgeon but explain that they believe the problem exists outside the throat. I am at my witts end. People do not seem to appreciate how debilitating this is. I feel like I'm walking around with a ticking time bomb in my neck, and although I don't sit there thinking about it constantly worrying as I've learned to accept that it does happen, I am fearfull of every attack. My doctors may not have come accross this before but i| refuse to believe that I'm the only person that this happens to. That doctors somewhere must have come accross it and identified what's causing it. I want to know what's going on, and hope to find a cure that works, not just be sent away with more pills or a stronger dose. I'm hoping that a doctor out there can give me some advise before I go to see the next specialist who hasn't heard of it. Or maybe a patient who has the same symptoms. I feel very alone with this but refuse to believe that I am. Many thanks for any help that anyone can share.
I think I have found solutions to this exceptionally frustrating and uncomfortable problem for some people:
I believe it is indeed a problem with the hyoid bone- in particular, the region called the Greater Cornu (the tips of the U shape of the hyoid bone). There is a surgery that reduces these tips (i believe it translates into that "sharp edge" feeling in the throat) removing a small amount of the bone. the patients describe relief on the same day of the operation. more info here: http://www.practicalpainmanagement.com/pain/maxillofacial/hyoid-bone-syndrome?page=0,1
I myself deal with a seemingly minor version of this, the only way i am ever able to relieve myself is to try and relax my throat as much as possible and gently press into my neck in VERY specific ways near the bend of the U-shaped hyoid bone while simultaneously providing pressure from the inside using my throat/tongue muscles. The only way I'm able to experience relief is to press towards the front of the hyoid bone while relaxing my throat so that things "fall" into place when i jointly provide pressure from the inside by pressing the roof my mouth with the base of my tongue, it sometimes feels like i'm widening my trachea and there are usually "hot" cracks that are paired with deep, blissful pain relief. But that's only one way of doing it- sometimes, different "methods" are required for me, and if I use the wrong one my sinus can get stuffed up on one side and the pain/discomfort will increase significantly. It is SO relieving for me when I get the right "method" though. It has taken me years to figure out how to press, when to press and where to press as well as how to use my inner neck and throat muscles to aid in the release of pain from the inside when I press.
The best method I have ever used is to use my fingers to reach deep in the back of my throat and massage the area from the INSIDE, sounds very weird but I laughed out loud with joy from the sheer amount of relief the first time I figured out how to do this technique. it can cause lots of gagging so I rarely do it, only in extreme cases. What i do is I use my fingers to follow my tongue all the way to the back of my throat- imagine I'm facing forward, I use my fingers to slide down into the left and right sides of the back of my tongue on the side of the inner throat towards the front of my body. In this (very sensitive) region, you can feel the tips of the U-shaped hyoid bone from the INSIDE of your throat- right above the "tips," controlled pressure massages with my fingers have released IMMENSE amounts of pressure throughout my upper chest, throat, ears and temples. this method is used with high degrees of caution, because too much massaging results in the sensation of excessive readjustment by my body, in other words if i do it too much it still takes away the main pain but still feels a little uncomfortable.
I wish I was better at describing these seemingly bizarre "methods" I have come up with, i presume it takes some practice to get a feel for yourself. I know what it's like to "force" a neck crack or "force" a massage and the bad sensations associated with it, and with that in mind i still genuinely feel like I'm relieving my pain in a weird but hopefully a healthy way.
I believe it is indeed a problem with the hyoid bone- in particular, the region called the Greater Cornu (the tips of the U shape of the hyoid bone). There is a surgery that reduces these tips (i believe it translates into that "sharp edge" feeling in the throat) removing a small amount of the bone. the patients describe relief on the same day of the operation. more info here: http://www.practicalpainmanagement.com/pain/maxillofacial/hyoid-bone-syndrome?page=0,1
I myself deal with a seemingly minor version of this, the only way i am ever able to relieve myself is to try and relax my throat as much as possible and gently press into my neck in VERY specific ways near the bend of the U-shaped hyoid bone while simultaneously providing pressure from the inside using my throat/tongue muscles. The only way I'm able to experience relief is to press towards the front of the hyoid bone while relaxing my throat so that things "fall" into place when i jointly provide pressure from the inside by pressing the roof my mouth with the base of my tongue, it sometimes feels like i'm widening my trachea and there are usually "hot" cracks that are paired with deep, blissful pain relief. But that's only one way of doing it- sometimes, different "methods" are required for me, and if I use the wrong one my sinus can get stuffed up on one side and the pain/discomfort will increase significantly. It is SO relieving for me when I get the right "method" though. It has taken me years to figure out how to press, when to press and where to press as well as how to use my inner neck and throat muscles to aid in the release of pain from the inside when I press.
The best method I have ever used is to use my fingers to reach deep in the back of my throat and massage the area from the INSIDE, sounds very weird but I laughed out loud with joy from the sheer amount of relief the first time I figured out how to do this technique. it can cause lots of gagging so I rarely do it, only in extreme cases. What i do is I use my fingers to follow my tongue all the way to the back of my throat- imagine I'm facing forward, I use my fingers to slide down into the left and right sides of the back of my tongue on the side of the inner throat towards the front of my body. In this (very sensitive) region, you can feel the tips of the U-shaped hyoid bone from the INSIDE of your throat- right above the "tips," controlled pressure massages with my fingers have released IMMENSE amounts of pressure throughout my upper chest, throat, ears and temples. this method is used with high degrees of caution, because too much massaging results in the sensation of excessive readjustment by my body, in other words if i do it too much it still takes away the main pain but still feels a little uncomfortable.
I wish I was better at describing these seemingly bizarre "methods" I have come up with, i presume it takes some practice to get a feel for yourself. I know what it's like to "force" a neck crack or "force" a massage and the bad sensations associated with it, and with that in mind i still genuinely feel like I'm relieving my pain in a weird but hopefully a healthy way.
1 Comments
I will bring this up with my GP. Thank you!
I can't give you an answer but I have the same thing. I'm 19 and it's been going on for at least 2 years now, every time getting increasingly worse. It's like something 'pops' behind another thing in my neck and gets stuck. It hurts so much that even though it's happened multiple times I still panic. Once it pops back out the pain can linger. I can't swallow, I can barely move my head up and down. Sometimes I can't even make any vocal vibrations. I used to be able to forcefully pop it back out but now that hurts too much to do. It used to only happen when I was lying down, but now every time I yawn I have to be VERY careful about it.
I just wanted to let you know that you are not alone. I have not found an answer either, but at the time of writing, I just finished the worse episode so far. The pain is lingering on the left side of my jaw up to my face (It always happens on my left side). I hope you find an answer, and a fix.
I just wanted to let you know that you are not alone. I have not found an answer either, but at the time of writing, I just finished the worse episode so far. The pain is lingering on the left side of my jaw up to my face (It always happens on my left side). I hope you find an answer, and a fix.
You posted a good while back, so I don't know if you'll see this... I was curious if you ever found any help for this?
Also, (you probably know all of this by now) the ENT that first told me about the Hyoid bone catching on the cartilage told me that this usually happens as a result of some type of head/neck trauma (like a car accident). This isn't the case for me, never had an accident or trauma of that sort. But he said that its like the bone has a jagged edge that catches easily. He didn't say anything about medications or injections, just said in passing that they could 'sand' the bone a bit. Didn't end up going back to the doc because he was really awful on a few levels... Anyway. I'm going to another ENT specialist next Monday and will see what course of treatment he recommends. I'm all in for surgery if it will actually FIX this! No bandaids for bullet wounds!
Also, (you probably know all of this by now) the ENT that first told me about the Hyoid bone catching on the cartilage told me that this usually happens as a result of some type of head/neck trauma (like a car accident). This isn't the case for me, never had an accident or trauma of that sort. But he said that its like the bone has a jagged edge that catches easily. He didn't say anything about medications or injections, just said in passing that they could 'sand' the bone a bit. Didn't end up going back to the doc because he was really awful on a few levels... Anyway. I'm going to another ENT specialist next Monday and will see what course of treatment he recommends. I'm all in for surgery if it will actually FIX this! No bandaids for bullet wounds!
I realize you posted this a couple years ago and may not even see this reply- but it's worth a shot! I'm having this same exact problem (have for about the past 15 years) and I'm wondering if you ended up finding anything concrete to do about it? I saw an ENT four years ago and he did say it was my hyoid catching on cartilage that was causing the problem, but the arrogant, obnoxious man didn't offer any actual help for it. I'm seeing another specialist on Monday. Had to date, my worst 'attack' last Saturday and my throat/neck is still hurting badly. The attacks are getting longer and happening more often. I saw that you're a singer- so am I, so this is effecting that part of my life.
I'm hoping you've found some relief and that you may see this and let me know of anything that's helped!
I'm hoping you've found some relief and that you may see this and let me know of anything that's helped!
Maybe try seeing an osteopath that treats using manual therapy. Many of the DOs in the States don't do manual therapy, but in Canada and Europe they do. The strain that is pulling on the hyoid needs to be relieved, and manual therapy sounds a lot less invasive than surgery.
I just experienced this for the first time last night. I went to see my chiropractor this morning after reading comments from people who successfully move it back on their own. His adjustment has not seemed to work. I was wondering if anyone who has had an x- Ray, MRI, etc... Has had the displacement show up? ( is it worth getting this done?) my next step will be an appointment with my doctor as well but from what I have been reading most doctors either don't know or suggest surgery or injections but I'm wondering if it can/ will just fix itself?
Also one last thing, mine is the left side (seems like this is common? very interesting) and I'm 20 years old and it started when I was 17. Perhaps sleeping on one side of your neck for enough years causes gradual build up of trauma? glad we are all coming together to share our experiences in an effort to get at the bottom of this. i firmly believe we do not need to keep suffering, and that there is a solution out there
I've been recently told that I have hyoid bone syndrome. Trying to find a doctor to treat it has been difficult. Been told Berke in LA or Woo in NYC. Any experience?
My tongue will go numb and I get lightheaded. Wonder if this presses on the carotid?
My tongue will go numb and I get lightheaded. Wonder if this presses on the carotid?
I have exactly this same thing happen to me. It started happening after I was rear ended in '06. One day I was laying in bed on my back and yawned -something popped in my neck and then left side from my ear to my shoulder seized. I couldn't breath or swallow or move my neck without the most excruciating pain I've ever felt. It last for a period of hours in which I also panicked thought I was going to die. It happened again that year and then the next. It is very sporadic and the length of time in which the pain lasts varies. Recently I started to get little hints -my neck would start to feel sort've lumpy and sore in the area that I associate with the full blown "thing." Then it happened again last week for the first time in about four years. I thought maybe it was done, but the little warning feelings are still there. Yesterday I went jogging on a paved surface and started to feel the muscles on the left side tighten (the pre-cursor feelings before the hyoid pops out) and I immediately stopped. I know it is going to happen again, and I am terrified. in addition to the fear of the pain, I am a singer and am afraid that this will eventually handicap my ability. Has anyone found a doctor who will help or has anyone found any measures of prevention that work? Help!!
I'm 27 and have had this since I was at least 18. My cousin also has the same thing she is 36 and has it since she was 17-18. We both suffer with the pain on the left side (is everyone's the left side??). Like everyone else, our GP's have looked at us like we were crazy and dismissed it. I tried to describe it to my GP as a tongue cramp and she gave me the weirdest look. I have been trying to do research recently, and it seems like a good portion of people suffer from this (which makes my cousin and I feel less like we are nuts) I hope that someone finds a doctor that knows what this is and what to do for it. Good luck everyone!
can u please help me? have u figured yours out yet? i have this and it is killing me.
Hello! I am 39, have had the same problem since I was about 17. The first time, my boyfriend and I were wrestling on the floor and I was laughing and squirming and all of a sudden I felt a pop. I was a swimmer and familiar with cramps and I thought that's what it was, so I massaged it (practically crying the whole time). When I relaxed and pushed really hard (like practically choking myself), I finally felt it pop back in. It happens all the time now but thankfully, I'm always able to pop it back in, usually within an hours time. Because i can deal with it on my own, I've never asked a doctor. I just assumed it was one of those things like a dislocated shoulder, or nursemaids elbow where once it happens, it's more likely to happen again. It's nice to know what it is, but it seems like many doctors are clueless. I have read a bit about the fact that if you have TMJ, you are more likely to have it. I have TMJ that pops on my right side and my right side is where I get the hyroid issue too. Good Luck All.. it pretty much *****!
Hello, Im 17 and my Hyoid also slips and dislocates or whatever it does, often. Iv had this for quiet a few years and along with the time its gotten more and more painful, Im sure anyone were can understand nd relate to the pain and soreness that follows even after.. :/ Mine is usually in my left side, Ill lose feeling in my ace, my tendons and nerves in my neck will shoot with pain up my face and down my left arm, tooth aches, ache and soreness after it happening.
I was wondering if anyone has heard anymore news on it or if there has been any progression in treatment for it that actually works? Or anything to help ease putting it back in place? Iv found sticking my tongue out as far as I can helps move it sometimes and focusing on breathing through my nose and calming my manic while I push it back. I made the mistake of not breathing because I was so fearful and scared to, to where I almost blacked out, I hate the panic feeling that comes with it, but in time iv learned to manage it alot better.
Im happy and sad at the same time to know others have suffered with this for even longer than I. Please post any new, news tips or just anyone else that has this.
I was wondering if anyone has heard anymore news on it or if there has been any progression in treatment for it that actually works? Or anything to help ease putting it back in place? Iv found sticking my tongue out as far as I can helps move it sometimes and focusing on breathing through my nose and calming my manic while I push it back. I made the mistake of not breathing because I was so fearful and scared to, to where I almost blacked out, I hate the panic feeling that comes with it, but in time iv learned to manage it alot better.
Im happy and sad at the same time to know others have suffered with this for even longer than I. Please post any new, news tips or just anyone else that has this.
Iam 26 years old. Iam not in country speaking english. So i have a trouble with comunicating someone who has same symptom and searching informations. I am a korean. In korea there are no one has knowledge with this symptom.
Who is the one has a way treating perfact?
Please contact me anyone someone like me or some perfactly cure.
***@****
Headache like pressing.
Remembering ability down.
Teeth ache.
Pain next to the nose.
Eyepain and dry eye.
Neckpain.
Sound after moving my jaw.
More pain all of the parts after weight trainning .
Who is the one has a way treating perfact?
Please contact me anyone someone like me or some perfactly cure.
***@****
Headache like pressing.
Remembering ability down.
Teeth ache.
Pain next to the nose.
Eyepain and dry eye.
Neckpain.
Sound after moving my jaw.
More pain all of the parts after weight trainning .
I hear you! Mine has been a problem for 10 years plus. Too much detail for me to write but a history of ENT, Neurologists, several X-rays, endoscope, MRI all results in th especialist saying there's nothing wrong ( I do have some age-related wear on a couple of veterbrae but that isn't my problem ). I am male and 47 years old. I've all but given up on conventional medicine. They don't seem to realise how arrogant they are telling you there's nothing wrong - I can demonstrate my hyoid bone grating against my spine in a way that can be heard and felt to the touch. Because this is outside their experience they dismiss it as nothing. My frustration at the pain and related symptoms including spasms, ears, jaw, neck, shoulder, pectoral, back, swallowing, talking, headaches - is matched by my inability to communicate the very odd feelings and lack of knowledge. It's taken a long time to find the term 'hyoid bone syndrome'. I know this is the problem - I recognise everyone talking about it. It seems to be barely understood or recognised. I can only say you're not alone! Exercise and relaxation help relieve a little. If I ever find anything worthwhile I'll post it all over the internet! Good luck everyone.
I have had an issue of the sensation of an object in my upper neck. I have been to 1 GP, and 4 ENT's and a neurologist. Have had MRI, 3D scan, xrays and no-one knows. Not sure if this is hyoid bone syndrome. Can feel something pressing against a nerve and used to feel it near my collar bone or clavicle. The object floats from left to right in my sleep as I turn over. Been 3 years now.
I too have suffered with it. So far my searches has shown it to be mostly women, but it has happened to me. It started about fifteen years ago. The first time was excruciatingly painful. I remember thinking it felt like a muscle cramp. I tried messaging it and swallowing was near impossible . It was the left side of my neck. What has worked for me is to crane my head back and to the right as if looking at the ceiling , I then message with some force and push it back. The pain goes away almost instantly. It appears to be happening more frequently .
it happened to me last night for the first time which is the reason why I am here searching about it. You are right, panic is not even the word to describe how u feel. I felt like I was going to be paralyzed or something because it would hurt so much to move or swallow. I tried to massage it, I went to the bathroom and filled up my palm with hot water and held it against the hyoid bone, it seemed to help and also I put ben gay on it and wrapped it with a scarf whole night. This morning the pain isn't there but my throat, ears, and back of my head hurts. Something just doesn't feel right. I know whatever it was it had something to do with hyoid bone and the muscles connecting to it because all that part got so tense. If u guys have any suggestion, let me know too please because I don't want to go through this again. I feel terrible this morning, kind of like the way u feel after having a migrain. email me at ***@****
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