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!

[maryflorence1976]

Sorry I see only now the messagge.
You have to contact Doc Staffieri in Padova hospital. He knows the problem with Hyoid bone.
Let me know if you need other infos.
Regards
Mary

[Entheos]

Is that mean that you haven't find any doctor except in India who agreed to do hyoid bone resuspending?

[Entheos]

DNGU777, Thanks a lot!
How are you feeling now?

[DNGU777]

The email is not visible.
So, just type tushar lakhia on google.

you are able to find his phone number.
Then, make a call, and tell your symptoms.

God bless you all.

[DNGU777]

I got surgery from Dr. Tushar Lakhia in India.

He reconstructed the dislocated hyoid bone, by fixating the dislocated part with wires.
It greatly relieved my pains from clicking and feeling of unbalance between the left and the right neck.
Even if it does not help voice disorder, I think that it is much better than just excising the bone

His email is ***@****

[Varadar]

Hi,
Has something changed with your problem ? I would like to know if there is any doctor in Europe who may help, for me it is impossible too to go to USA from Poland