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!

[wildblue98]

Hey guys, I just got back from an ENT appointment with the another ENT I am working with here in Los Angeles he ordered a 3d reconstruction of the hyoid which basically takes the cat scans and runs them through a computer program that will allow us to better visualize the space between the hyoid bone and the tranverse process. I got a really good look at my ct scans with him for a good 5 min today on the computer monitor screen and both ends of the hyoid bone do appear to be close enough they could be rubbing against the tranverse process the right side is about a mm closer which another ENT surgeon from Utah had also explained as elongated. I think since there is really no control normal position for the hyoid that defines symptomatic from asymptomic (like there is in Eagle's syndrome) it is hard for them to say " it is abnormal to be off a millimeter closer to the right and that could be causing the clicking" but from looking at the scans myself with my doctor we both agree these two structures could be close enough to be clicking on one another. Also, what I got from this is that it probably does not take much maybe a couple mm for the hyoid to alter position and begin to click, that would explain why the click starts in many people with relatively uneventful episodes like a cough or yawn. Hopefully, when the ct gets digitalized and reconstructed into its 3d-dimensional format the team of surgeons at UCLA will be able to observe the exact malformation or elongation responsible for the click, I mean if one can feel and hear it, one certainly should be able to see it. I hope this 3d constructed scan and surgery provides some needed answers for all of us. Science has gotten too good to keep the hyoid syndrome in the dark for long.

[miskatonic]

sorry to hear that; If they're giving you dillies (hydromorphone) then you must be in a world of hurt I can't even imagine. What I found with the narcotics was that they take my mind off the condition a bit, but don't actually do anything to relieve the pressure - does that sound familiar? Benzos (klonopin, valium, xanax) can help actually relieve pressure because they are smooth muscle relaxants, but unfortunately they are probably more addictive than even opiates are, and the withdrawal can kill you.

Hang in there, we'll get to the bottom of this. All of us.

[scottiek]

Ive never heard of those 2 drugs. The first month I toughed it out the best I could before I kept going to ERs. I ended up on 500mg of neproxen which is an anti inflamatory but didnt help. I was told to take tylonol3s with it which I tried. I was taking 5-8 T3s a day with 2 neproxens and it didnt help that much, gave me a bit of relieve but gave me new pain elsewhere and I became more or less an a-s-_! So Im now on 1mg of hydromorphone but need 2-3 at a time to get any relief. Sorry those are the only meds Ive really ever been on so I cant help you with the 2 you are inquiring about.

[miskatonic]

man, my heart really goes out to you guys :-/ most of the time I just feel a pressure sensation over my hyoid tip, and that's the worst it gets if I don't abuse my voice or throat.

You guys are making me feel like I don't even have a real problem.

Out of curiosity, have any of you experimented with Neurontin or Lyrica for pain management? I just started a tiny dose of neurontin, but I may push my doctor to switch me over to Lyrica because it looks like a more hardcore version of the same thing, and I'd rather find out sooner than later if it's going to help.

[wildblue98]

another incubator baby this seems too coincedental, I have had similar experiences with sleeping on the left side yours sounds a little more severe but I definitely know what you are talking about, your greater cornua of the hyoid is hooking on the thyroid cartilage or tranverse or both that is probably what you are feeling. I readjust the left side of my hyoid all the time thats the only thing that makes it temporarily better is taking that bony protrusion getting my index finger behind it and  trying to push it forward away from the tranverse process, makes sense why this would reduce pressure and the click. That is great you are going to make it out here in January I should be recovered by then and be able to give you input on the procedure. You are almost there hang in there I wouldnt worry too much about the catching being unfixable since it is a mechanical issue you should have quite a bit of relief after that portion is removed medical literature with hundreds of patients with similar hyoid bone syndromes symptoms validate this.

[GGCB]

Sorry I haven't posted for a while, I am just recovering from that awful H1N1 flu...yup, I got that....and the coughing has made the muscles and ligaments extremely loose and the hyoid issue even worse, if you can believe that.  Now, it is almost impossible to sleep anymore.  I used to use sleeping to get away from my problem, now whenever I lay down, the hyoid hooks onto something in my neck on the left side and makes it impossible to swallow and what ends up happening is I immediately wake up feeling like I am choking and smothering to death.  It always used to get caught when I slept (that is why I used those special bead-filled pillows to support my head and keep it in one position), but it also always used to uncatch when I swallowed...now it gets caught and stays there unless I sit up and physically manipulate it back to where it is supposed to be.  I have been able to sleep only a few hours per night for the past week.  The hyoid feels so loose now (too loose), since I got the flu.I am so afraid that things have gotten so damaged that even Dr. Berke may not be able to help me now...I truly hope that is not so, because I am making my appointment to go and see him in January and I am going to plan to have my surgery that same week...no more waiting...I can't anymore.  A person cannot live with only being able to sleep a few hours a day.  It is so strange that after 3 years of having this, that it would get worse...well, I only hope and pray that it is not too late for me, that he can still fix it.  What do you think wildblue98?  Has this ever happened to you, where it gets caught when you sleep and won't go back?  By the way, in answer to the question regarding premature babies, I was told I was an incubator baby...I believe that means I may have been born a little early.