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Hyoid Bone Syndrome
Five years ago I was diagnosed with trigemential neuralgia after face pain started and it did seem to match. however, as it progressed some things didn't add up like the pain crossing over both sides of the face.
Additionally as it went on and I began to pay more attention, I had migraine like symptoms.
Then as I began to pay more attention, I noticed it would falre up immediately if sitting on a soft couch or leaning forward, etc and the pain was also originating under my chin often, and extremely tight/tender/painful muscles on each side of the neck and even as it progressed over the years into the collar bones, and breast.
From the get go, I had told them it often started like a muscle cramp up the right side of back of neck and sometimes the occiptal nerve and up over the head like a spike through the occipital nerve and eye. But really perplexted and was ignored by neurologists is how I would continually tell them about the pain in the chin/thyoid area and how if i press on that pain, it would cause instant flare up in nerves in my face and a cold mask sensation across the lower part of my face like wearing a mask across my mouth ear to ear.
I get a clicking in the my throat when I swallow, sometimes when the pain flares up, it feels like something is squeezing my airway. If i Press on the area around just above my adam's apple, i get clicking and the pain all flares up instantly. When it flares up (even without pressing) it often feels like someone has shoved forceps through my skin into the soft area behind my chin upwards toward my mouth and is pinching them closed around the skin and muscle, etc between the points.
Sometimes the base of my tongue would spasm or even lock up. Often times when the pain is starting up it comes first in my teeth and I know the next few days are going to get really bad. And when it's really bad, the gabapentin, baclofen and tramadol do very little except after I've taken several doses by the end of the day and go to sleep.
When I came across hyoid bone syndrome, I couldn't believe it - every symptom I've tried telling neurologists about is listed there to the letter. And yet, no one seems to know about this and so mentioning it to docs just gets me ridiculed or head scratching.
Is anyone aware of doctors that specialize in this or know anything about it at all? I have had an assault to the neck area before. I have been to TMJ doctors who said maybe a little but not enough to need a bite plate. I went to an ENT who stuck a scope down my throat and refused to do an ultrasound or anything and sent me on my way annoyed with me.
I have been going to neurologists for 5 years who just kep handing me meds for trigemenial neuralgia and saying "see you in six months." Once they tried an occipital nerve block which did absolutely nothing to help. The other wanted to crack my skull open and cauterize the TN nerve. But the pain originates in my chin the most and then causes TN branch pain.
I've tried hunting down doctors who have written articles about hyoid bone syndrome only to be told they've retired or specialize in something different.
Appreciate any help or leads.
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Absolutely, I found mayo connect as it came up in my google search while researching hyoid bone syndrome where it came up as an interesting forum.
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1 ReactionReally informative post, Kari. I hope you'll also join the Thyroid Cancer group here: https://connect.mayoclinic.org/group/thyroid-cancer/
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1 ReactionSo - I have compression of the GP Nerve - cranial nerve IX - unlike Eagle Syndrome - it’s compressed on the right side in the brain by the posterior inferior cerebellar artery. I also have signs of the internal jugular vein being compressed and wonder if there is more to the story in regards to glossopharangeal neuralgia. I have been on Gaba for unrelated nerve pain for a a couple of years - which is one of the treatments for GPN so thus may have been preventing or muting the pain.
Also my gastro doc had me do a motility study to check for esophageal spasms as my pain will radiate to my sternum, I meet the criteria for jackhammer esophagus. If I did not have the face ear neck and throat pain - this could explain things. I wonder if GPN triggers the esophagus to spasm. Still having test done.
I have developed an eye turn in the last month which is interesting as A pituitary lesion was also seen in my MRI. Every test result leads to more rests and more confusion.
And still I suffer with horrible pain. Sigh.
@divinityrose: I often Google hyoid bone syndrome to see if others might be experiencing the symptoms and to share my experience with them. After you mentioned your clicking and tenderness at your hyoid bone, I thought I would share my experience with you. Please see the links below. Many doctors told me I was crazy and that there was nothing wrong. However I did find a doctor at Stanford who removed my hyoid bone and I have been pain free since. Not saying this is what you have, but if you want to talk to a doctor that really knows about clicking in the throat and hyoid bone syndrome, read the links below.
Edit: I tried to post the links below but it would not allow me to do so. Please direct message me and I can send them to you I think. Hang in there, you got this.
Hi yes please send me the links. How was recovery?
Hi @notyouravg, welcome to Mayo Clinic Connect. I noticed that you wished to post a URL with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.
Since the URL you wished to post is to an entry that you made in another forum, could you simply copy and paste that message here for the benefit of all?
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1 ReactionI still cannot post links, but when I can I will do so. My recovery has been great. There is no more pain in my throat.
My post from another forum in Aug 2020:
DO NOT GIVE UP
DO NOT STOP SEARCHING
As of last month, I struggled with a sore throat (on the left side only) for the past two years and I’ve been reading the stories here for about a year now. Everytime I spoke or ate the left side of my throat would just rage with pain. The pain would get progressively worse throughout the day such that, by the end of the day, it would be too painful to speak after a full day of work. Eventually I started to get pain behind my left ear. As I came to learn more about this area of my throat, I started to realize the pain felt like it was coming from what I know know to be the greater cornu of the hyoid bone.
Was not strep. Nothing on xray. Nothing on CT scan. Nothing on MRI. No visual abnormalities inside the throat. Not my voice box. Literally no indication of any abnormality besides the raging pain I experienced everytime I spoke or ate. I honestly thought I was crazy.
All this learned after after a few physicals, ENTs, anti biotics, steroid and anti inflammatory injections, etc over the course of 1.5 years…but still nothing. Until I went to Stanford Hospital here in CA and met Dr. Dewan. As a diagnosis by exclusion (all tests possible had been performed without exception), I was diagnosed with Hyoid Bone Syndrome - a condition affecting the greater cornu of the hyoid bone.
Surgery: I had a hyoid bone recission (remove greater horns) and thyroid cartilage reduction at the end of August 2019 (just had my 30 day post op yay) under Dr. Dewan’s care. After surgery while still at the hospital, Dr. Dewan told me that the ends of my hyoid bone curved inward at 90 degrees, making the surgery a bit more involved, but gave some assurance we might be on he right track, though she had not seen this before.
She also told me that once she had me out, she was able to click my throat...an indicator of hyoid bone syndrome (see reading materials below).
Thank the man above, my wife (by my side the whole way), my family and my surgeon…a month after surgery and I feel amazing. I can talk without pain in my throat or behind my ears. It’s AMAZING. Surgery was intense, but if this trajectory continues wow. I will give a more detailed account in due course, but I wanted to put this out there in case anyone is struggling: a) don’t stop searching and hang in there b) read these stories, they helped me know I’m not alone and to learn about my body and these conditions c) please reach out to me with any questions.
READING MATERIALS:
Here is my collection of what I was able to dig up when I was trying to figure this out; so many google searches and long nights on the internet spinning due to lack of material. I found these resources to be invaluable in learning about the condition and in helping me to realize surgery was the course of action I personally needed to take to solve my issue (and that I wasn’t loco or making the pain up):
1. https://www.researchgate.net/publication/41449944_Anterior_Throat_Pain_Syndromes_Causes_for_Undiagnosed_Craniofacial_Pain - this was my favorite of the bunch. It goes through a bunch of conditions that cause throat pain, Hyoid Bone Syndrome being one of them. Funny enough, the best piece of medical reading I found on the topic for me was this and it’s by a dentist, not an MD
2. This paper https://www.practicalpainmanagement.com/pain/maxillofacial/hyoid-bone-syndrome#:~:text=A%20condition%20characterized%20by%20both,photomicroscopic%20evidence%20of%20insertion%20tendinosis. , by an MD, talks about Hyoid Bone Syndrome from a degenerative muscle condition perspective. While my Hyoid Bone/muscles did not exhibit degeneration (we tested it after they cut out the bone), it’s still super informative and instructive.
3. This paper https://www.uclahealth.org/head-neck-surgery/workfiles/Laryngeal%20Voice%20Research/Articles/2001%20Smith%20Clicking%20in%20the%20throat.pdf refers to Hyoid Bone Syndrome as “click throat” or “click larynx” because it’s a symptom that some folks exhibit. It talks through the symptoms and also evidences several surgical outcomes (via rescission of hyoid bone), all of which eliminated the pain. For me, the positive outcomes kept me optimistic when I was scared pre-surgery and needed a dose of optimism.
4. As opposed to surgery, this paper https://journals.sagepub.com/doi/pdf/10.1177/0145561318823373 talks about injections as a solve for throat pain at the hyoid bone. For what it is worth, I tried injections pre-surgery with no luck. That said, my doctor, and this article, state there are solid outcomes with this approach.
My hope is that anyone trying to solve for mysterious throat pain can read these articles and try to piece things together enough to get in front of the right doctors to solve your pain.
Please reach out to me with any questions and don’t give up, you got this!!!
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4 ReactionsGood luck
Thank you so much for all of your information! I really appreciate it! How was recovery? We’re you able to drink or swallow normally while healing? How long did it take to heal? I am in NY. I am trying to find drs who specialize in this here. If you know of any referrals here please let me know. Thank you so much!