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!

[Entheos]

Hi guys,

So, my right superior cornu of hyoid bone was broken. It happened 6 month ago. Don't ask me how it was. Also, first 4 month were horror - throat pains, clicking while swallowind, extremely disturbing dizziness.

Since I have this fracture, I have clicks in my throat each time I swallow.

In 2 last months I have also chronic pain at my right jaw. X-Ray of TMJ is OK, i don't know what is lead to this pain.

According to hyoid bone fracture: I meat 3 different professors (I live in Israel) and they propose me a Sistrunk procedure. It means surgery: to cut off the main part (the body) of hyoid bone.

Have anybody here this surgery? Is there any complications after this surgery? I understand that there're many muscles connected to hyoid bone.  If a big part of hyoid bone will be removed - will it affect the swallowing?..

Another question: have you any pain in your jaw after hyoid bone fracture?

[lah126]

I have followed your story and was just curious as to what Dr Berke said that you have.  Was your hyoid bone fractured or not?  What did he do for you and are you symptom free.  Was your symptom clicking and popping of the hyoid bone along with pain.....upoin swallowing...esp. dry swallow.

Thanks!
LAH

[scottiek]

I saw Dr Berke at UCLA medical center in Jan 2010. I highly recommend seeing him if at all possible. My first consult was 1500$ but was worth every cent. He thought outside of the box and gave me a diagnosis and gave me options for treatment that worked. 12 doctors including specialists(ENTs, Neurologists) in Canada couldnt figure out what was wrong with me. Please if you can afford to go see Dr Berke call his office. I cant guarantee he will be able to help but I can go as far as saying he saved my life and gave me the life I once had back. cheer to all.
Scott k

[adk355]

Funny I found this have had this happen for 2 years now aboit 10 times. I thought after it happend last I would give the internet a shot and couldn't beleive it. The very first post shelly k put is just like mine. Although i looked where the hyoid is and mine seems to be on the right side where you would find your pulse so O am not sure. I have never seen a dr. For it i thought i was just crazy i guess. I have never tried to put the bone back though usually just a warm wasgcloth but its very painfull

[Entheos]

Hello. Is anybody in there?

ENT surgeon saw my fracture and told me "Go to maxillary surgeon, because we haven't something to fix your bone, maybe they has".

Than I told to maxillary surgeon, they told "I haven't done hyoid bone surgery never, go to ENT surgeon"

Why?? Is it difficult to fix two parts of fractured bone with some titanium pipe?
It's so pity that I am not surgeon.

Do somebody know about this kind of surgery? Just to fix two bone parts? (The fracture is near superior cornu at right side).

[Entheos]

Hi guys,

I've been diagnosed. Professor of ENT saw me and my tomography results and said that my hyoid bone is broken. It's easy to see on CT.

When I asked - so what I have to do? He told "nothing, just live with it".

I can't accept this solution - because clicking is painfull, also my occlusion was changed and that lead to TMJ dysfunction (I suffer from dizziness).

What can I do? Is there any possibility to "seal" broken bone? Or remove broken part?

Thank you.