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!

[jenra]

Hello, my name is Jen I am a 27 year old identical twin.  My twin and I have had the same type of problem for many years.  My sister says she thinks this first happend to her when she was 12, while eating doritos.  She thought she had a dorito stuck in her throat but soon realized this was not the case.  We have always said that our throat pops out of place when this happens.  We have both noticed that this happens mostly when we are laying down and  we lift our head up and look sideways.  It also happens when standing up while turning our head in a somewhat awkward position.  I don't know if it puts strain on our neck causing the bone to pop out of place.  It feels very uncomfortable when this happens like a chip is caught in your throat.  In order for the bone to go back into place we have to move our throat around until it goes back.  Sometimes it could take a little while before it will pop back into place. We also have never heard of anyone else having this problem besides us.  My sister has told the ENT about what happens and he thought it could be a cartlige in her throat.  Like you have all said I don't think doctors are very knowledgeable about this problem.  I would like to see more research done on the topic because people think you are crazy since they have never heard of this before. Now I know that the problem may be caused by my hyoid bone.  Thanks for the input.

[gorp]

I am 39 years old, I have had this problem for 6 or 7 years.  I have always explained it as  - it feels like my left tonsil has popped out of place.  Would anyone else explain it that way?

[howem41]

Thank you all for this board.  Finally a group of people that have had the same thing happen.  Everyone DOES think I am crazy when it happens.  After years of struggling I found out that this same thing happens to my mother.  I will be back soon to see if anyone has had any luck with Dr.'s

[talonturbo_2003]

I am 24 years old and have had this problem for a few months now. I had my tonsils out in February (which the ENT said it was one of the worst cases that he's seen in a long time) and my necks pops on the left side when I turn my head to the left. It doesn't dislocate completely but I feel alot of pressure like it might but no pain. My hyoid bone is very lax and makes alot of "grinding" noises even when I turn my head to the right. I am a Physical Therapist and I realize it should move but I've had a couple of my co-workers (P.T. and a Speech Language Path.) take a look and they say it feels abnormal to them. I went back to see my ENT and she told me that I had a severe case of GERD and said that is what may be causing my problem due to swelling and inflammation which my cause the laryngeal cartliges to be rubbing against the back of the hyoid. She gave me script for Prevacid and told me to take that and if it still is happening to come back. I've been taking it for a couple of weeks and it still pops. I truly think they didn't have an answer for me. So I haven't decided if I will go back to just live with it.

[GGCB]

I have those same grinding noises in my hyoid area just like you which happens when I turn my head in either direction.  This is just one of my many hyoid symptoms and pains.  My hyoid bone pops out in the left side whenever I turn my head to the left, even slightly, and stays caught on something inside my neck when I turn my head back to the right.  I am in a constant state of discomfort and even pain.  Feels like my hyoid is scratching inside of my throat when I move my head or swallow or talk.  What I would like to ask you is, has the GERD medication helped the grind ing in your throat?  If it has, then I will try that because I do have mild Acid Reflux Disease.  Please post back letting me know if it helped with the grinding at all as I will try it also so that I can at least get rid of one of the many symptoms that causes me discomfort.  I am sorry to see so many people with this hyoid problem. Everyone keep posting and updating their medical status, changing symptoms, things they have tried, and any success in improving any of their symptoms!

[talonturbo_2003]

I feel that it has helped just a little with the "grinding" feeling, but the popping of the hyoid is still there. It wouldn't hurt to try the medication just to see if it works for you.