What dr did you see? I just want to go to someone who it’s familiar with all of es abd hyoid bone syndrome. I’m exhausted and I’m tired I just want to go see someone who’s actually going to do something and help. I don’t even care where it is I’m in Southern California I will make it there wherever it is.
Okay I see you had the doctor in San Jose. I’m calling him tomorrow.
Dr. Samji, whom I saw, is the most experienced ES doctor on our Doctors’ List. I don’t know if he’s ever diagnosed hyoid bone syndrome. If you get a second nod away from ES, Dr. Karuna Dewan at Stanford has done hyoid bone surgery for one of our members who didn’t end up having ES. She would be another resource for you.
Thank you you’re amazing. Always helping me out. But what exactly is the difference between the two.
ES is elongation of the styloid process(es) which is actually calcification of the stylohyoid ligament. The s-h ligament runs from the tip of the styloid processes to the lesser horns of the hyoid bone. The hyoid bone also has two greater horns. Hyoid bone syndrome arrises from the greater horns becoming elongated or thickening such that the hyoid bone loses some of it’s movement & begins to press on some of the same nerves that elongated styloids &/or calcified s-h ligaments irritate.
The hyoid bone can also become “tethered” by calcified stylohyoid ligaments. Under normal conditions it moves freely up & down & a little side to side when we swallow, talk, laugh, cough, sneeze, breathe, etc. When it loses the ability to move as it needs to, pain results.
Here are some internet pictures to help you visualize these areas:
Click on the box w/ the question mark & the link for the hyoid bone picture should open. Please let me know if it doesn’t.
I realize this original post is a few years old, but as a new person in the group I am trying to read as much about my symptoms as possible. I am 10 years post whiplash incident that started all these symptoms. Most everything listed I have. Lately my pain in the side of the neck when bending over or lying down and same with chest and arm pains are becoming more frequent. I do finally have a panoramic x ray that confirms ES and an appointment two weeks from today. I am nervous about the chest pains, but have been checked numerous times (EKG, stress test, etc.) and its all “normal”. Any advice on dealing with these symptoms for two more weeks while I pray and wait to see the surgeon?
@MHBOLEWARE - The chest pain could be caused by your vagus nerve. It’s one of the cranial nerves often irritated by ES. It’s pretty dense in the left chest area, & others, including myself, have had chest pain which I believe stemmed from an irritated vagus nerve since all cardio testing was negative for a heart issue. Below is the link to an image that shows the approximate course of the vagus nerve which may help you understand why it most likely causes a number of the symptoms that are common to ES.
Vagus Nerve Image.docx (81.7 KB)
The best advice I can offer is for you to ice your neck for 15 min. every couple of hours or when pain flares as they may help reduce the inflammation that is irritated nerves which are causing your symptoms. If ice doesn’t help, try heat. Some members have found sleeping w/ head elevation at night is also helpful. If you notice that having your head in certain positions makes your symptoms flare, try to avoid those positions.
I’m really glad your doctor’s appt. is only a couple of weeks away. I hope whomever you see is familiar w/ ES & able to help you. Taking copies of a couple of research papers to your appt. that mention at least some of your symptoms as being related to ES can be helpful. There’s a link to many of those under the General Category on our home page.
Please let us know how your appt. goes.
@Isaiah_40_31 Thank you for the information. I have had to sleep with head elevated or almost sitting straight up to relieve pain, so this at least makes sense of my symptoms. So thankful for this forum. Hopefully I can continue to learn to navigate through all the information here and be best prepared for my appointment.
There is a lot on this forum to read & so much to know. You can search for posts related to your symptoms by using the magnifying glass search tool in the upper right & typing the symptom into the search box. Posts that have that symptom listed will come up. This may save you some time over trying to read everything that’s here, but it’s also good to see the whole picture of what symptoms ES can cause.
Hi @Isaiah_40_31 i have pain right under my ear lobe. Thats where the vagus nerve runs. So do i just ice at the basr of the ear?
Yes, that would work though icing that whole side of your neck would likely cover more of the vagus nerve. It’s quite extensive as I expect you know.
Yes i had a look at the picture. Thanks a lot. Its been a long journey for me since 2016. I had a thunderclap headache at work. Got diagnosed with chiari malformation type 1. Had continuos headaches for 10 months. Had C1 C2 radio-frequency ablation, 13 facet joint injections, many painkillers and muscle relaxants, acupuncture, massage, dry needling to name a few. Nothing helped. The intensity of headaches has gone down. But right now its more left sided temple pain, throat pain and pressure, tinnitus, see flashing lights in my vision with certain head movement’s on the left side. Never heard of a hyoid bone and styloids in my whole life. Considering we are in developed countries, not one doctor knew about this. Now bit concerned about the impending surgery and the decisions that have to be made in the process. So grateful that I found this site and this community. Thanks again.
Though your situation is a bit more complex than many of us have experienced, I can safely say, most of us were in the same boat as far as never having heard of a styloid or hyoid bone prior to our ES diagnoses. Having ES has opened up a whole new world medically for me!
Please keep asking questions & after you have surgery, let us know how everything went & how you’re feeling. Hopefully some symptoms will already be gone when you awaken post op!
Im getting a steroid jab soonish and quite ready to accept dr Hughes- offer about resecting my hyoid bone and partially cutting down my styloids from the same incidion. If it doesn’t work i can have an external revision later. But if he is offering both the things in one surgery im willing to take that option as im so so fed up of living in constant pain and prsseure. Three ent doctors have said that the styloids will not grow back. But how much of my styloids he can remove from the front of neck incision, i dont know tbh and not medically qualified to question that. Good news is, he has offered to speak to the imaging centre and get them to look at the extent of compression on my catotid arteries and also confirmed that he will smoothen the styloids and the hyoid down so they dont rub agsinst any nearby areas. If i had a choice i would have the surgery today. But taking the jab first, as an ent friend based based in Abu Dhabi says that before signing up for a very invasive surgery, there is no harm in trying the jab out first. Very scared at the moment. Mind goes on a tangent all the time. But having chatted to Debbie, has given me a lot of faith in Mr Hughes’ abilities. Unfortunately in UK we dont have many options.
Let us know how you get on with the injection, hope that you can get it done very soon…
Thanks @Jules im so glad that i found this page. Will surely let you know. Someone just told me that if the hyoid is <4mm away from carotid it is high risk. Mine is just above 2mm away from the carotid artery.
@Hema - at the very least, your hyoid resection will help with the most critical problem - potential carotid compression. I will be praying that however much of the styloids are removed, that part of the surgery is also very helpful.
Thanks a lot @Isaiah_40_31 im just dreading the thought that i might need another revision surgery later and how ill cope plus its a lot of money.
@Hema - My best advice is not to worry about the future. Stewing about something that may never happen is a waste of time that could be spent being emotionally at ease. Take one thing at a time. The revision surgery may never be necessary.