Is this Hyoid Bone Syndrome or ES? (Need Help)

General
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Hey everyone , I’m new here and want to thank you in advance for anyone who takes the time to read this or help me / guide me in the right direction. The whole “doctors not knowing much HBS and ES” is why I’m here as I feel like it is something every doctor I go to is missing or not even considering.

I’d like to share with you my story if you don’t mind and see if any of you think its potentially HBS or ES, if it is I am willing to fly to any of the doctors this site recommends to have the surgery as it as so deeply affected my life to the point where I’ve developed severe anxiety and can barely go out anymore because of it. I firmly believe I’m having HBS that is causing muscle / nerve issues or affecting my vagus nerve but let me know your thoughts…

So here is my story and all the symptoms I suffer

For me this globus / gagging + clicking sensation that only happens on the right side of my throat started randomly when I was 14 years old during a soccer game. I started gagging for no reason at all while playing and fast forward 20 years later I still have it and it only got worse as I got older. What’s so weird is prior to this “event” I never had this issue, it’s like it occurred over night. Here are my exact symptoms

  • Constant gagging sensation right side of throat (tightness)- Symptoms gets worse with stress or anxiety/any emotion or even just talking for to long.
  • Symptoms worsen with heavy physical activity (working out / sports / lifting things / etc)
  • Lack of sleep or being tired makes it 10x worse / However good sleep makes it 10x better
  • Everyday fluctuates, there is no consistency in this thing
  • Caffeine makes it worse (but not all the time, some days it doesn’t even affect me)
  • Talking for long periods of time without chewing on a mint or drinking something is impossible (because if I don’t ill gag)
  • Throat clicks on the right side where this globus is felt when I dry swallow or turn my head to the right- When eating / drinking / chewing the sensation is relieved (especially mints or gum)
  • When I swallow food its a struggle on the right side (same where there is clicking)
  • Globus sensation / tightness where the “clicking” is happening (sometimes the click is painful like a sharp feeling)
  • Sometimes if I yawn to hard it feels like the hyoid snaps out of place and hurts so bad I have snap it back in by putting my chin down to my chest
  • The clicking only happens when I turn to the right or dry swallow, I can also make it click just by simply placing my fingers on my throat and moving it back n forth.
  • Xanax Helps It (this is the ONLY medication that has helped. I’ve tried every medicine you can think of and this is the only one that supplies a bit of relief)
  • about 15-20 min after eating any food it gets worse + throat feels heavy and full.
  • Strong alcohol helps
  • Sensation is there all the time , it’s just more “tamed” when emotions aren’t involved. Emotions like excitement, anxiety, happiness, sad, etc. all affect it.

The best way to put this is that it almost feels like if the muscle (or hyoid bone?) is being used at all, it just spasms or tightens. I know that this is cricopharyngeal spasms but there is no definitive or underlying cause of what is causing it. I have done the following so far

  • CT Scan (when they took my CT scan they had me laying down and swallow, but the clicking doesn’t happen when I lay down. They should have taken the CT scan in a neutral position and had me cause the clicking but they didn’t so I feel they missed it)
  • X-Ray
  • Endoscopy
  • Barium Swallow

All which came back normal, which is the same for all these stories I read…everyone gets a million tests done but everything shows “normal” but this is the complete opposite of normal. To shut down the “anxiety” theory that all doctors seem to resort to, this happens when I am not anxious. The best way to shut down the anxiety theory is let me put it like this

Anxiety is brought on by the feeling, the feeling isn’t brought on by anxiety. (anxiety just heightens it)
It’s like having a bruise on your arm , then someone comes up and punches the bruise. The bruise was always there but the feeling got worse cause someone punched it. The punch is the anxiety, the bruise is the globus. The problem is I have no idea how the bruise got there in the first place!

The sensation is only heightened by my emotions and that goes for other emotions as well, not just anxiety. If I am excited about something, afraid, sad or anything it causes the sensation to get worse but the sensation is always there regardless just tamed. The hardest part about this problem is its inconsistencies. Let me give you an example of what I mean:

If I had 2 days back to back where I did the exact same things as in got the same amount of sleep, ate the same foods , went out to the same places, etc. one day the sensation would be 10x worse then the other for NO REASON its as if this problem has a mind of its own.

I just find that there HAS TO BE something going on with the right side of my throat. The fact that the globus sensation is coming from where I’m feeling the “clicking” can’t just be a “coincidence”.

I really would love to hear any of your thoughts, money isn’t an issue for me so if I have to get surgery or go somewhere to have this fixed, I’m fully committed because I’m at my wits end and in a desperate position now. It has affected my life way to much.

Note: I would like to say that I know that my symptoms are identical to that of cricopharangyeal spasms but I’m curious if something is going on with my hyoid bone on the right side that is causing them , like compression on the vagus nerve cause I know the vagus nerve is the mother of crico spasm.

Thanks!

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I forgot to mention that it also is a click when I dry swallow every single time on the right side and some days it feels heavier on the right side then others…more predominant .

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Hi and sorry to hear about your symptoms.

Would you be able to post images of some of your scans here (most preferably the CT scan. Perhaps one of the members may be able to see something that the radiologist missed (as these are rare syndromes).

On reading your note, I was thinking you may have clicking larynx syndrome or HBS, but I am not a medical professional, so my opinion counts for nothing.

However, depending on where you are, you should try and get an appointment with one of the doctors listed on this page:

It has a list of doctors listed by area that are familiar with ES, and some will know about hbs and cls (but another member of the group may need to help you on this to point you in the best direction). Recently, I have seen some people on this forum who had hyoid issues in the US go to a doctor called Dr Dewan.

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Just to add, the forum has a search function where you can search key terms, and posts that contain those words will appear. You can type “clicking larynx” and read posts from other people who have this as a symptom and their story. Hope this helps

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I will absolutely post my CT scan once I get the images, I had to request them from the doctor cause in the results report they sent to me it didn’t show , all that was there was this report.

CT SCAN OF THE NECK

INDICATION: Abnormal swallowing function study with possible
abnormality of the hyoid bone.

COMPARISON: Swallow function test on 05/01/2024.

TECHNIQUE: The study was performed without intravenous contrast. The
study was performed without oral contrast. Multiplanar reformatting
was performed. One or more of the following dose optimization
techniques were used: automated exposure control; adjustment of the
mA and/or kV according to patient size; use of iterative
reconstruction technique.

MIPS Quality Measure: Appropriate Follow-up Imaging for Incidental
Lesions:
In this report, any dictated pulmonary nodule without stated
specific follow-up recommendations is to be considered incidental and
per consensus recommendations requires no follow-up imaging.

FINDINGS:
Visualized base of the brain: Normal.

Visualized orbits: Normal.

Visualized paranasal sinuses and mastoid air cells: Clear.

Tongue, tongue base, and floor of the mouth: Normal.

Pharynx, larynx, and trachea: Normal.

Salivary glands: Normal.

Thyroid gland: Normal.

Lymph nodes: No lymphadenopathy.

Vasculature: Normal.

Upper chest: Normal.

Soft tissues: Normal.

Osseous structures: No significant abnormality. Hiatal bone is normal
and symmetric.

IMPRESSION:
Unremarkable exam.

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Also what is the difference between CLS and Hyoid Bone Syndrome? Thanks so much for the response btw appreciate the help and guidance.

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The globus sensation is typical of ES, (it’s not necessarily that there’s anything blocking your throat, it’s because nerves in the area get irritated), the clicking throat is more often seen either with HBS, or when the stylo-hyoid ligaments calcify at the hyoid end. As @virenlondon says, when you get the CT images you can upload them (remove personal info though) & we can have a look to see if there’s anything obvious- it’s unfortunate but many radiologists miss this.
It is very common for ES to flare up, sometimes there’s an obvious reason, but often for no apparent reason. Some members have had symptoms abate for long spells. Finding your throat symptoms worsen with certain emotions isn’t unusual either, see this discussion by @nancyh :
Does stress or nervousness make your sore throat pain worse (or other symptoms)if you have Eagles syndrome? - General - Living with Eagle
As @virenlondon says, there have been several members who’ve recently had surgery with Dr Dewan , so here’s some posts:
Thought it was time to post my story… - General - Living with Eagle
Finally diagnosed with clicking larynx syndrome! - General - Living with Eagle Need help to get diagnosis. Anyone from GA? Any doctors does provide consult for out of state patients? - General - Living with Eagle
Hope this helps, & you can find out if HBS is the issue!

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Thank you so much , everyone has been so helpful and has provided me with alot of hope. I have gone undiagnosed for 20 years now and I can deal with the clicking and the other symptoms but the “globus”, “strangling/gagging” sensation is just to much to handle and has caused alot of anxiety in my life and prevented me from doing alot of things. All my doctors just brush it off as anxiety , but they never listen to me when I say that its this sensation that causes my anxiety not the other way around…anxiety just simply heightens the sensation.

I will most certainly reach out to Dr Dewan. Do I do that through this website? I’m new here so not sure how to reach out to that specific doctor. Thanks!

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Also quick question if you don’t mind.

I forgot to mention that I noticed after I eat , especially fatty foods or heavier meals the globus sensation is much worse. Is that because the muscles are being used or stressed on that side , can it affect the hyoid bone directly? It seems like most of the symptoms stem from the bone causing muscle issues correct? so if the muscle / bone is being used in general it causes stress on it / flare up of symptoms?

Also I do get really bad ear pain / tightness about 2-3 times a month out of nowhere and I now have tmj on the right side of my jaw.

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@Rfoxed - You should call Dr. Dewan’s ofc directly to make an appointment:
•Dr. Karuna Dewan, Ochsner LSU Health Shreveport - Academic Medical Center - Specializes in Hyoid Bone Syndrome surgeries
1541 Kings Hwy, Shreveport, Louisiana, 1-318-626-0050

Symptoms are more related to nerves being irritated & the muscles’ responses to irritated nerves. My thought on the globus sensation becoming worse after eating fatty foods is that those foods are inflammatory i.e. they create inflammation. Though we do need fat in our diets, fried/greasy foods have excess fat which may be causing an immediate inflammatory response in your throat. Some of our members have gone on anti-inflammatory diets & a number said it helped reduce their symptoms.

Here’s an example from Johns Hopkins: https://www.hopkinsmedicine.org/health/wellness-and-prevention/anti-inflammatory-diet

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@virenlondon / @Jules

I was able to get my CT Scan images but unfortunately I do not know how to get them to be in 3D to provide better imagery , if either of you could help me with that I’d appreciate it because I tried to use one recommended by @Isaiah_40_31 but unfortunately it says you have to have the images in DICOM format but mine are in .jpeg so not sure how to go about that.

However here they are (if any of you could take these and turn them into 3D for me it would mean the world to me as I am not tech savy at all lol)

Note: All my symptoms as stated before are on my right side

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I’m a totally rubbish with tech , so I wouldn’t be able to help you, I’m sorry!
There’s is another tutorial on here, I’m not sure if it’s of any use:
Making Your Own 3D Images from CT Scan- 3D Slicer Tutorial - Living with Eagle
I can’t really see the styloids in those images, the hyoid looks like the processes could be a bit longer and thicker than average in your second image but the images aren’t great…I’m sorry!

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Are these the only images you received, @Rfoxed? Normally the images come on a CD. The way to convert them to 3D is to upload the images off the disc into the dicom conversion program. If your radiology lab only sent you jpeg images, you need to request they put all your imaging on a CD & give it to you that way. I’m sorry for the confusion regarding conversion. A number of our members have said that the RadiAnt conversion for PC is pretty self guided so you don’t need to be super techy to use it. I think Bee Dicom Viewer for Mac is also that way. Another option is to ask the radiology lab to please produce some 3D images of your of your scans which show your styloids & hyoid. Some labs will do that for you.

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Yes all the images on my disc were .jpeg format unfortunately
I can take a look again to see if they came in DICOM format at all but I don’t think they did so I’m not sure what to do

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@Rfoxed - I just looked up how to convert jpeg files to dicom files. You’ll need to have your jpeg files uploaded onto your computer.

Here’s a link to a tutorial for a site where you can do that. Click on the “Check our video” button for the tutorial.

If you are still struggling, please ask someone you know who’s more techy for help. I’m pretty sure it’s free:

Online JPEG to DICOM converter | Free GroupDocs Apps.

I hope this helps.

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Gotcha, well I got all my files converted to DICOM but I still can not figure out the program to get the images. Do you know if there is anyone who would be willing to help me out by doing them for me if I send the DICOM images? I’m willing to pay someone to do it , just not sure who or where to ask. Thanks!

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Good job, @Rfoxed! That’s a GIANT step in the right direction!! Did you try following the info in the link to the post @Jules sent?

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Quite a few of our members who are good with all that are taking a break for now, hopefully after Christmas someone will see this & give you advice!

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RadiAnt DICOM Viewer is pretty easy to use. install it, upload the DICOM file location, select which CT image you want turned into 3D, and select 3D volume rendering or F3. You should be able to rotate/edit the 3D image, and save screenshots and even save videos of the 3D image. A video wold then have to be converted to GIF or uploaded to video hosting and link sent to see on this site? Here is an example of a movie converted to gif I made. Still images are fine too!

FrontEScut

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Thanks for that @BirdsOfSore , I hope it helps @Rfoxed …:crossed_fingers: