hyoid bone problems

[shell k]

History of my problem: For as long as I can remember, I have had a problem with my hyoid bone popping out and causing excrutiating pain. It is always the same - the right side of my neck. At about the age of 8 I talked to my pediatrician about it and he promptly told me it was not possible. That I was having anything "pop out" in my neck. He contended that there wasn't anything there that could pop out. So I just continued to push it back into place whenever it popped out. Back then, it was very easy to push back and only lasted a few seconds until I got it back. About 3 years ago, I noticed that this was happening more and more frequently (used to be about 2-3 times per year) Now it was happening about every month and was much harder to push back. Sometimes taking 20 or more minutes. During that time, it was extremely painful to swallow or talk. After I would finally get it pushed back into place, the pain would go away, but my whole neck would be sore up to my ear and through my jaw. It felt bruised, but no visible bruising on the outside. Over the next couple of years, this problem continued to get worse, happening weekly with some minor "slippage" on a daily basis.  Throughout my life, I have talked to various family practice doctors about this problem. They all contended that it must just be a "lump in my throad" like when you get emotional. Or maybe it's just excess head conjestion. Or maybe it's just a muscle spasm. Or maybe I'm just imagining it. Whatever the case, no one had ever heard of anything like it and no one ever took me seriously. So, I started researching on my own. I could not find anything that sounded like what I had. I posted questions to "Ask and Expert" all over the web. I did get some respones. all of which started with "wow, that is interesting. Never heard of anything like that before." One physician directed me to find a good ENT. So, I did. He took me seriously. He ran tests - CT scans, swallowing x-rays, blood work, etc. I saw a speech pathologist and everything. The swallowing x-rays showed that my hyoid bone did not more in unison. It appeared that the hyoid, which I'm told forms in the womb from 3 point of origin and then fuses into a solid bone before birth, had never fused into the solid bone at all. The ENT that ran the tests did not feel qualified to handle this case, so he referred me to a colleague who does a lot of throat cancer surgery and work around the hyoid bone. He reviewed the tests and theorized that if we removed the portion of the hyoid that was not firmly attached to the rest of the bone, it should solve the problem. I ran this thought process past the head of Otolaryngology at the Mayo Clinic, who had also never heard of such a problem, and he concurred that this theory did make sense. However, there were no guarantees due to the fact that no one had ever seen or heard of anything like it before. So, I went ahead with the surgery on 10/26/06. It seemed to go well. For 3 months, I had no problems. Then on 1/23/07, it popped again, just like it had always done. I immediately went back to the surgeon who is completely at a loss of what to do. His only recommendation is to do more surgery and remove more of the hyoid bone. However, the more they take out the greater the risk of swallowing issues post-surgery. I'm not sure I'm ready to sign up for that again just yet. Since the 1/23 incident, it has happened 3 more times with the last time being only 2 weeks from the previous episode. I'm worried that this is going to continue to get worse again. If it were only going to happen a couple of times a year, I would just deal with it like I have my whole life. But if it gets back to being almost every day, I can't imagine having to continue to deal with that for the rest of my life. As long as the bone is in place, I have no problems. No swallowing problems, no pain, nothing. I just never know when it's going to pop. I do a lot of public speaking and presentations. My greatest fear is that it will happen in front of an audience. The pain is so sudden and intense that I immediatley burst into tears. This is the main reason I have been pursuing this issues to begin with. Any suggestions? I saw in your archives that a person with the nick name of "creyn" described a similar condition back on 11/22/2004 on this web site. Did anyone ever help her? Any feedback would be greatly appreciated. Thanks!

[miskatonic]

one thing i've just noticed -- as i said, i can feel a little nub on either side which seems to be the base of the greater cornu. I used a sharpie marker to place a  dot on my neck on the outside directly over this nub. On the left, my dot is a good 1 centimeter higher. This sort of implies to me that the lump i feel in my throat literally is the top of the greater cornu on that side, and i feel it unilaterally because it's only mis-elevated on that side.

not sure what affect if any this has on my prognosis -- clearly, chopping out the entire cornu is going to relieve the pressure, since there would no longer be anything pushing -- but if I have really done this to myself through crazy screwed up muscle use and muscle tension, seems like it might just cause more problems down the line.  I'm going to mention all this to my PT and see if there are any manual exercises which could be done to stretch the hyoid ligature on that side,  to get it to rest at a more normal angle.


My heart goes out to all of you in serious pain :( My biggest problem all along has been foreign body sensation and intermittent swallowing pain (which, for sure, is anxiety producing and screwing up my life), but it sounds like I've gotten off very easy compared to some of you. You will be in my heart and prayers.

[scottiek]

Im just going to pass on playing around with my hyoid, Ill let my doctor or physical therapist play around but for me there is way to much pain in the area and Im already in a great deal of pain.

When I see my doctor I will ask him about it, what he knows about it and if their are any benefits in doing it. I havent spoken to my doctor to go over what the neurologist thought and recommends. I might get to a point sooner than later where contacting Dr Burke at UCLA become an option. Right now Im just seeing what we can figure out here. I know my physical therapist and my doctor have skimmed through some of these posts. When is your second surgery schedules for?

[wildblue98]

I have never heard of an inflammation test what part of the body is this focussed on, my symptoms have been the same, do your headaches follow the distribution of the internal and external carotid arteries?  (look at my posted diagrams for reference)

I tried playing around in my neck and I cant  seem to do that hyoid thumb self test thing you wanted me to try. I have alot of sensitivity in the area and a lot of inflammation.
While if it exacberbates your symptoms it could be a hyoid syndrome GGCB can actually grab the end of the greater cornua it is sticking out of the side of our neck on the left side this may or may not be a difference between us. I dont know how to better explain the brown method you have to rock the hyoid back and forth one hand on each side.

[scottiek]

hi sorry to hear that you are dealing with some of the same issues we are. I also dont have any click like GGCB and wildblue98. But my symptoms match theirs. If you have found an ENT that thinks surgery is an option count yourself lucky. My ENT still doesnt think anything is wrong with me. Also be thankful that you have insurance and are in the states. Im in Canada so I have no insurance. I would much rather pay less taxes, pay for your own heathcare insurance and still end up with more money then have a free system where you get taxed to death for it, unless ofcourse you are poor, unable to work or in a lot of cases here unwilling to work. Both countries have great doctors but we lose ours to the US and Ive never heard the US complaining about losing doctors to Canada. Anyway you have choices and get dealth with quickly.Here you wait for everythign its free but Ive been off work and in incredible pain for 4 months now and Im more or less stuck in the system. My doctor now is outstanding but my ENT was terrible and the department wouldnt let me see other ENTs in the city....where you are you could see who ever you want. Sorry Im just frustrated but please dont complain about the american system it has its benefits just like we have ours here.  Hope you figure your situation out.

[scottiek]

Do either of you every get dull aches and pressure behind your eyeball sockets. This symptom has been annoying me a lot lately and feels like eye strain with pressure


I forgot to answer that, sorry.

I do have pressure all over in my neck and head but even the headache are generally brief and in odd spot in my head. Ive felt strong pressure behind my eyebrows but not really behind my eye. Its too the point right now my eyes could pop out and I might not notice because of all this pain in my neck....im exaggerating but the pain has been more than i ever thought I could deal with.

[scottiek]

Hi seems like Ive missed a lot of action on this site. In the last few weeks Ive felt more pain than at any other time in my life. I think its from doing very minor new exercises with my PT. With all that pain I have had a tough time reading for any length of time. It could also be from the hydromorphone anyway sorry I never got back to you. I tried playing around in my neck and I cant  seem to do that hyoid thumb self test thing you wanted me to try. I have alot of sensitivity in the area and a lot of inflammation. Since we last spoke I saw a neurologist and was told everything seemed fine from a neurological poinit of view. I havent seen my doctor yet but the neurologist was going to recommend a I-something test. Its an inflammation test but Ive never heard of it and I have no idea how this will help me. Do you have any idea what test I mean? or if it will help?
How have your symptoms been the last 2 weeks?