Diagnosed with hyoid bone syndrome

General
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Hi guys. I was encouraged to post a new discussion so I'm following the advice.

My story is that for 1.5 years I've been dealing with various symptoms that no one could pin-point despite all sorts of exams, tests, etc. My CT Scans continue to show as normal. An ENT has diagnosed me with Hyoid Bone Syndrome but the injection he tried in the neck didn't help me at all. He said my thyroid cartilage is rubbing the left hyoid bone but he said I'm not the atypical hyoid bone syndrome patient for this reason. Another ENT has confirmed this diagnosis. Both have told me I do not have Eagle. We think an injury happened 1.5 years ago when my 8 year old son was playing with me, put his arms around my neck, clasped his hands and threw all his body weight backwards.

None of the doctors in my area seem to want to do the surgery as they have no experience with this exact sort of injury. They said they've worked with/around the hyoid due to throat cancers.

I have spoken with Dr. Berke's office in Los Angeles and they asked me to send my records to them which I'm in the process of compiling. I've also left a message with Dr. Marshall Smith's office in Salt Lake City.

Anyone else had hyoid bone surgery? Or a surgery to trim the hyoid bone or thyroid cartilage in general? Any advice about the recovery? Or surgeons? I'm willing to travel across the map to find experts.

Thank you.

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There were a couple posts lately having to do with Hyoid Bone Syndrome. http://forum.livingwitheagle.org/forum/topics/for-those-with-hyoid-bo...

I had hyoid bone surgery and removed about 2cm of the greater horn. I was told that hyoid bone surgery is less dangerous than styloidectomies, but that it is very painful to swallow for about a week since the hyoid bone is directly related to swallowing. I would say you should look for a doctor who has both experience in both thyroid surgery and styloid/hyoid surgery (if there is such a doctor). I would think any doc that does skull base surgery should be well-equipped to do your surgery. Have you looked at the doctor spreadsheet posted on this site for a list of docs in your area?

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Thank you very much for the response. Are most of the doctors doing the surgery ENTs? Three doctors I’ve seen told me it is a very rare surgery and had no idea who in our area would do it. One said he would take a shot at it but that was hardly inspiring. Honestly, no I had not search this thread in a while and was unaware of the spreadsheet. I will check it out. Thanks for the tip.

In my situation for about a year I had a dull pain in the left Hyoid area and A doctor put me on prednisone for the various symptoms he thought were neurological. At the end of the prednisone my neck began to crunch where there was once a dull pain. This crunching help people diagnose it and actually believe me.

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May I ask what your recovery was like? From what I understand sometimes they trim the thyroid Cartilage instead of the hyoid bone.I have yet to get into the doctor to know for sure which path that will take with me.

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I had an ENT do my surgery and he did a very good job. His specialty is in vocal chords. The surgery is rare, but not any more difficult than other surgeries in the area (said by my doc).

The surgical recovery was about a week. It was very hard swallowing. That was the most painful part. Lots of mashed potatoes and gravy. It was done through the neck and the scar is barely visible. Where are you located?

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I am nervous with all the nerves, arteries and muscles in that area. My ct scans have never showed anything unusual. My docs diagnosed me by using an ultrasound to show the rubbing.

I am in Richmond, va.

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I have scheduled a surgery with Dr. Smith in SLC for next month. Still not sure it will resolve all my problems of tongue tightness/choking feeling but I've got to give it a try.



Christian22 said:

I had an ENT do my surgery and he did a very good job. His specialty is in vocal chords. The surgery is rare, but not any more difficult than other surgeries in the area (said by my doc).

The surgical recovery was about a week. It was very hard swallowing. That was the most painful part. Lots of mashed potatoes and gravy. It was done through the neck and the scar is barely visible. Where are you located?

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Whoa you have something extremely specialized! I can not give you any advice. I did accidently run across a web site for the head and neck Institute at Cleveland Clinic for a doctor Brian Burkey that has an awful lot of head and neck specialties under his belt. Perhaps this is something you may want to explore or go to his site and try for an on line second opinion? I do not know this doctor and have never seen him, but I do understand when you are searching for docs out there and willing to travel. I posted a discussion just today giving his web address at the Cleveland Clinic. At least he is the first doc I've researched that actually listed Eagle Syndrome as something he treats....perhaps your issue may be within his expertise also?

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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.

Well… :slight_smile:
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.

Everyone here kept me going, thank you!!

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Great info & report, notyouravg! Thank you so much for sharing your “adventure” & its happy conclusion. Hyoid Bone Syndrome & ES can have many symptoms in common. It’s those darn cranial nerves that get irritated & make us hurt & sometimes feel crazy. So glad you found the right doctor to treat you. I will add Dr. Dewan’s name to our doctors’ list w/ a note that she did hyoid bone surgery for one of our members. I would expect if does hyoid bone surgery, she could also do ES surgery & would be another reference for ES surgery.

We’re so glad you found help here. That’s what we hope for everyone who joins us.

:relaxed:

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Yes, amazing forum!

Dr. Dewan is great and she can do ES.

In re: HBS As I understand it, she is one of a handful of docs in the US performing the surgery.

I note that Dr. Samji in San Jose is an ES pro (and super nice guy), but he told me he had not performed this specific surgery before.

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So pleased that you found out what was causing your symptoms & have had a successful surgery! Great news! Nice to know of a doctor doing this surgery.

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Thank you for the info about Dr. Samji. That will be useful going forward.

BTW - I corrected my post. I realized after I posted it that Dr. Dewan is a she, not a he. Sorry for my error.

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Thank you so much for your story because yours is exactly to a t like mine. I have had a sore throat for more than a year now. The pain comes on when I speak and by the end of the day I can not talk at all because I am in so much throat pain. I was diagnosed with bilateral vascular Eagles and had my first right styloidectomy 10 days ago, but I don’t think it has helped my throat. Thank you for your story I will be now telling my ENT if he can check on my hyoid too as I really now begin to believe this is what is causing my painful talking and throat. May I ask you how are you feeling nowadays. Any suggestions. I am so desperate. Thank you again and God bless.

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Hi Pinky,

Though your hyoid could be involved, you are still very early in recovery from your surgery. ES surgery can take 6-12 months for full recovery. You still have a lot of inflammation in your neck & throat from the surgery you just had. Keep icing at least a couple of times/day for 15-20 min at a time. This will help your symptoms. If not, try heat or alternating ice & heat. ES surgery requires much patience during recovery as nerves are very slow to heal. It’s the vagus nerve that affects the vocal cords & often also the throat.

Usually by the 2-3 month post op mark, our members have noticed a significant improvement in symptoms that are still bad soon after surgery. Additionally, you have bilateral ES. Often symptoms from the remaining side flare up after the first side is removed. This leads some people to believe that the first surgery didn’t help at all when it really did. It’s just that the second styloid needs to be taken out for complete recovery.

I had my styloids removed in 2 separate surgeries - 2014 & 2015. I am 6.5 years out from my first surgery & am still noticing improvement from the bits of nerve pain I had left over after surgery.

Please, please try to be patient. Hyoid bone syndrome & ES have very similar symptoms. If your hyoid bone has elongation in the greater horns, that should be obvious on your CT scan so you can ask to have it reviewed again to look for that rather than having another scan.

Here’s the link to an article that may help you:

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Thank you so much, you are the best. May I ask how much better are you?

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Night & day better! I was very debilitated by my ES symptoms. Though I didn’t have vascular symptoms per se, I had weird blood pressure drops & heart palpitations when I exercised & would not be able to catch my breath. Felt like I was going to pass out. Between my first & second surgeries I had a terrible bike accident w/ a head injury that I think was perhaps caused by my remaining styloid pressing on something vascular that actually made me black out while I was riding. It caused postponement of my second surgery.

Today I am very active & mostly pain-free & symptom-free from ES. I still get an occasional twinge in my neck, face, ears but it doesn’t last. I also have a bit of numbness along my left jawline. I count all these things as good reminders of how far I’ve come since I had ES & I am so thankful for the good results I got from surgery. As I said, though, it did take 9-12 months after each surgery before I really noticed most of my ES symptoms were basically gone.

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Wow, these are all my symptoms. Thank you for uplifting and inspiring me. At times it seems like this nightmare will never end but now I know I am on the right path and have to be more patient. Thank you my friend from Colorful Colorado. I really miss being active and screaming lol. My son, 12 is being trained for the 2024 Summer swim Olympics to represent USA, and I miss screaming at this meets when he sweeps 1st places. I now have hope. Thank you again for all this valuable information. It means a world to me.

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Oh Pinky! How exciting for you to have a son who excels in swimming! I’m sure he knows how much you support him even if your voice doesn’t work right now. I will pray that you can get back to screaming for him. It may take awhile. Please take it easy for the first couple of months after each surgery because pushing yourself will cause your symptoms to flare up which will make you feel down. Even on days when you feel good, try not to do too much. You’ll learn your limits during healing but once you feel better, you can resume your normal activities.

Did Dr. Hepworth do your surgery or someone else?

I wish you quick healing!

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Thank you. Dr. Hepworth did my surgery 10 days ago, and I am glad I am on the other side. It is just I can’t even say a word without going into major pain in my throat, under tongue, hyoid bone. Is this normal? I thought by now I would see some tiny improvement. Should I limit my talking (even though I don’t talk much at all)? It 's been like this for the past year and now after surgery. Thank you and sorry if I am repeating myself, maybe this is why I think Hyoid Syndrome could be the culprit.

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