My son needs your help. We have been to soooo many Drs. and none of them know how to fix this.
The hyoid bone is disattached from the ligaments on one side. My son is experiencing pain to his ear and temple, chokes on food, feels like there is a golf ball in his throat, trouble breathing when his head is turned to one side. This is all causing him to have panic attacks. He wants to rip his throat out he told me.
The bone pops out chronically. It has been 3 weeks since we were able to verify the injury. His ENT used a video scope. One ENT wants to cut a portion of the bone and another wants to try to resuspend it. Neither have experience with this injury, I think because it is so rare. These are very good Otolarygologists from Manhattan, but who do I listen to??????
I thought my son was the only one in the world dealing with this. It started when he was 15. We took him to the doctor numerous times with no results. Finally we took him to an ENT who did some research. He said he could only find one other case in the US. He did a sort of experimental surgery cutting the bone shorter. My son healed quickly and had relief for about three years. Then it began on the other side of his throat. A second surgery when he was 18 was performed and both sides were cut this time. Again relief for 3 years. He had a third surgery in June. He is 21. These surgeries did give him 3 years of relief each time. The ENT has no idea how long or if ever he will need a 4th surgery. Our hope is that it will stop with his growth. Please let me know if this helps. :}
Last edited by Administrator; 10-02-2011 at 06:56 PM.
hi, i am so happy that you responded to my post. It is such a horrible feeling seeing your child in pain and discomfort and not being able to help. My son has been living with this for 5 years now. He just turned 20.
I have felt such guilt all these years that I could not help him. I was too nervous to allow the Drs. to perform surgery on him when none of them had experience with this injury. I am curious how your son injured his hyoid bone?
Last edited by Administrator; 10-02-2011 at 06:56 PM.
I thought I remembered you were on the east coast. I live in Oregon so I don't know how much help it will be. The surgeon is from Kaiser Permenente which is an HMO. His name is Steven A Long. He is from Otolaryngology. My son had no injury that we know of. It just started "popping out" when he was 15, and none of the doctors seemed to know what to do. We had to be very persistant. Dr Long had no experience in this and did a lot of research. Now he's done my sons surgery 3 times and I trust him. Hopefully he can help or direct you to a colleague in your state. . :}
Last edited by Administrator; 10-02-2011 at 06:57 PM.
I am so happy to find this forum. I thought that I was the only one who had been suffering from this pain. I also went to many ENTs and discussed my symptoms with doctors, but they did not understand.
They seemed to consider a hyoid bone as auxiliary.
Every time I tried to explain my symptoms, they said that it was just a neurological or psychological problem.
I also keep trying to find a doctor who understands this and knows what to do. Good Luck. Way to go.!!!
Actually, I know a doctor who is really interested in researching on this subject. He has done many surgeries, and most of the patients are satisfied now. He is an Oral Surgeon having specialties in TMJ and Hyoid Syndrome.
One of my friends had a dislocated hyoid bone, so he could not speak loudly.
Furthermore, he had also problem with breathing and swallowing. But after getting the surgery, the pain almost disappeared. And the volume of his voice greatly increased. It seems like he has become a new person.
I also have same symptoms with him, but the doctor does not accept my insurance, so I am just waiting until I am able to get a new insurance.
I am currently talking with my ENT doctor about Resuspending my hyoid bone. He took my CT scan and said that he would email me if he could do the surgery. So, I am waiting for his answer.
Anyway, the bottom line is that
"DO NOT excise or remove your hyoid bone."
Hyoid bone is ESSENTIAL for normal body function, such as breathing, swallowing, speaking, and total balance of the body.
I assure the you guys also have the feeling of unbalance for the neck and face; suppose that you cut the portion of your hyoid bone.
It would worsen the feeling of unbalance and the other symptoms.
That is, RESUSPENDING or RECONSTRUCTING the dislocated bone is the only way to fix this problem. I am waiting for my doctor's answer.
So, once again, "DO NOT listen to any doctor who insist that he or she should cut the dislocated bone. DO NOT !!!!!
I really hope and pray that this post would help you guys.
P.S: my ENT physician is Dr. Robert Ward. He is at Cornell University.
Even if he is at Pediatrician Department, he deals with the hyoid bone dislocation. So, if it is hard for you guys to wait for my result, you could try to contact him by yourselves.
Hello, my name is Mike and im 15 years old... Im from Europe and i really need help. I think im suffering the same problem as your childeren. I dont know if my problem is so bad as what others have but i'd like to share and maybe ask for help. This problem started about a when i was 14. Always when i stared laughing and i turned my head i suddenly had this bad pain in my neck, sometimes i managed to put my finger there and it went away. But about a week ago i laugh and i didnt manage to stop it. I had really bad pain in my neck, i couldnt move my neck and i felt like someone stabed me. I was like this for 5 hours then i just took my fingers and hardly touched my neck and suddenly the pain went away. This is what leads me to a possible dislocation of the hyoid bone but im not sure. The thing is that even though im not suffering really bad pain, now i still feel like there is something in my neck, as if always when i swallow i feel something there. I also feel small presure which i have all day, its not really paintfull but its really distracting and it affects me mentaly... Im scared to laugh and the fact that im one of few people that have this type of a problem scares me even more. It would really help me if i would find someone what would maybe share some ideas. THx!
Last edited by moderator2; 04-28-2013 at 11:08 AM.