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!

[LAJ4life]

please someone help

[LAJ4life]

Hi milly! I sent you a direct message but this is litterally the EXACT symptoms i have and i am also a singer- it ruined my life. I am recieving a steriod injection tomorrow and am extremly un hopeful that it will do anything i am so tired of eating beans and liquid- please lmk if u find any info please!

[LAJ4life]

has anyone recieved a steriod injection in the area of the hyoid? i am getting one tomorrow for this and i am really nervous please help- thank u

[DNGU777]

Good Luck, Milly04.

I wish you all the best.

[Milly04]

Hey everyone!
I have been reading this forum for sometime now and always backed away from sharing. I felt without a resolution to this issue I I had nothing to contribute. But I am now realizing how important it is for our story to be heard and hopefully more posts means getting the recognition we deserve.

My issue started March 2011 and being a singer and taking lessons for over 6 months I immediately thought maybe I must have pulled a muscle because all of a sudden one day I woke up and had this throbbing pain in my throat. I stopped taking for  a few weeks... spoke with my coach who made me do practice drills and noticed nothing wrong with my pitch. I got my vocals checked and they were fine!

But still my pain was there (I had pain in my right throat near the tonsil and hyoid bone area and the base of my tongue also hurt) Every time I swallowed  it felt like something was stuck. Eventually after a few months my pain was now also my right neck/base of neck at the back/shoulder/and scapula region.

And ofcourse this is where all of our stories share similarities. No doctor has been able to help me or even understand what I am going through.
I live in Canada so I was booking ENT appointments as frequently as I can (the wait time is sometimes 1-2 months)
- First ENT said it was "psychosomatic"!! CAN YOU BELIEVE THAT!
ok let me relax here! But I felt so insulted and he was so dismissive.
I went back to him (a second time) and he felt around my tonsil area and said "seems like theres a hardening in that area like a nodule let me refer you to another ENT"
Fast forward that ENT said I needed a Tonsillectomy and to remove whatever nodule that was.
After surgery they discovered NO nodule and months later after healing my pain was worse then before. This is where my depression kicked in and still lingers around sometimes.
- From there I have seen more ENTS who have said  Acid Reflex, See a speech therapist and possibly thrush because I was taking antibiotics at one point for a month.
- Finally I went to a TMJ and after 4k of getting 2 splints and Ozone Therapy injections I was still where I started except all the money down the drain.
- I was sent to a neurologist who said I have glossopharyngeal neuralgia. I was given Lyrica for 6 months and it worked for maybe 1 month just a little bit but by the end of that I felt like a zombie - gained 20 pounds and that was it.
I started to lose hope at this point but never gave up.
- I went to a chiropractor/Massage therapist and that gave me relief in my shoulder/Scapula pain. But nothing ever resolved my throat/neck pain.
- I ended up going to another ENT who said my muscles are very tense in that area and a solution would be excision of the hyoid bone but "You're too young for that" she said and instead gave me a steroid injection. That helped and brought my pain down but couple weeks later it was back.
-3 months later I got another injection this time with no results

Symptoms
- Hurts when I talk for too long
-Even crying makes my throat hurt
-Lots of pain in hyoid region area
-Throat feels tight
-I hear a clicking in my thyroid cartilage when I swallow
-The right side of my neck hurts
-The back of my right throat
-Back of neck/Base of skull
-diffuculty swallowing sometimes
-headaches
-after a year my pain finally started in my shoulder and scapula

So the reason why I decided to post today after many years of reading this is because I made my appointment with Dr Smith in Salt Lake City Utah. I saved up and I am finally going in a week.

The reason why I didn't go with Dr Berke is if you google him, there was a lawsuit that was broadcasted on lots of news station about racist remarks he's made. The doctor who sued won the case. I thought maybe before judging I should read the reviews of patients and a lot of people were complaining about Racism from him (please feel free to google and read also)


So my heart told me to go with Dr Smith. I felt safe with the decision and I hope I get the treatment I need to remove this pain. My life has drastically changed - I was a singer who was signed to a major label and it was my main source of income. I got released two years ago because I simply was not delivering. I was going in everyday recording under lots of pain medicine and by the end of the night I couldn't talk or move. It finally all caught up to me and now I have been unemployed and don't know what my calling in life is anymore. It was the only thing I was genuinely good at and enjoyed doing.
This whole problem has effected me in many ways! Im hoping we all figure out what this is.

I hope to come back with some answers!

[LAJ4life]

can you please tell us if you got surgery?

[Ernuste]

Did you have surgery and where? Or did you find another solution?

[DNGU777]

Go to Dr. Cannady in Penn Medicine ENT.

He might be able to help you.