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!

[ramblinmanva]

I am having a surgery by Dr. Smith next month.  How did yours go?

[LAJ4life]

How did your surgery go?

[Ernuste]

Hello, any updates? How are you? How did your surgery go?

[LAJ4life]

I am very interested as well as I am considering having the surgery because I can no longer live with this.

[Ernuste]

LAJ4life, are You planning to do the surgery to dr. Smith? Or somewhere else? Do You know ENT surgeons, who would know, how to solve this problem? Did You consult with surgeons and what they say?

[LAJ4life]

I saw Dr. Berke back in 2014 but I only got an injection. It helped for a while but now I am in daily pain to the point of where I cant work. I would get the surgery through him I believe however I don't know if it will fix my problem because I have clicking on both sides and it isn't palpable it is just when i swallow. He said my hyoid bone is way to close to my larynx

[Ernuste]

LAJ4life, Have you tried other options to reduce the symptoms? Like physical therapy, chiropractor or sth? Hope, that surgery will help you to feel better, wish you the best and I'll be waiting for your updates

[LAJ4life]

I tried physiotherapy and it made it worst. I did a few chiropractor treatments but it didn't do anything. what is STH?

[Ernuste]

I mean something... sorry for my mistakes:( can I ask you, what kind of exercises or manipulations was done to you during physical therapy? Have you tried electrostimulation, for example TENS?

[Ernuste]

I'm asking because I am physical therapist, who suffer from clicking and pain. I am trying to find the way to solve this, so the information about your bad experience would be very valuable. For me, hyoid bone manipulation from side to side made the symptomes a lot worse... I almost became suicidal...

[LAJ4life]

They took each muscle of my neck and massage it it triggered more inflammation for me. Right now i am at my worst. Do you take anti inflammatories? They seem to help sometimes iwth the pain. Please dont ever feel sucidal because there is hope even though i feel that way alot too.

[Ernuste]

Yes, I take anti inflammatories, it helps a little for a while...  I have tried craniosacral therapy in combination with acupuncture, but there was no relief. Streching exercises are not effective. I also use lexotanil and tranxene for better sleep, now I am going to start fluoxetine because I am on depression due to this hyoid issue. Im trying to stay strong...

[ramblinmanva]

I phoned the office of Dr. Picken and the nurse had her right beside her and checked and I was told she does not do the hyoid bone surgery.  I'm a bit bummed as I'm told that i need it.  

[ramblinmanva]

Is anyone updating to this site any further?  The injection I had in my neck did not help me.  I've checked with a few ENTs in my area and they all tell me they don't treat hyoid bone syndrome.

One out of town ENT recommended Dr Berke or Dr Woo in NYC.  Has anyone ever used Woo?

[ramblinmanva]

I saw a great ENT in northern Virginia yesterday who diagnosed me with hyoid bone syndrome.  He gave me an injection into my left hyoid area.  He used an ultrasound to show where I was rubbing together.  He's not sure the injection will help.  It's been almost 24 hours and I'm still crunching.  Not sure if it will take longer.

He cautioned me about the surgery that he personally has never done it and it would certainly permanently change my swallow.   Hoping it doesn't come to that.

Interested if anyone has updates on their situation.

[ramblinmanva]

Any update?

I'm dealing with this issue for 2 years and I'm betting I need to have this surgery.  I'm in Richmond, VA.

[LAJ4life]

Did you ever figure out your hyoid bone problem?? i am so desperate I need help so badly. Thank you. god bless.