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.

[Burgundy3021]

I have this...burgundy_21***@****

Email me if you want....

[mkhan30]

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 ***@****

[Worknprog]

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 .

[longjohnsfrogs]

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.

[deanism]

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.