I appreciate you sending this and I almost have it working but when I go to turn it into a 3D image , the 3D button doesn’t light up or enable me to use that feature. Here is what I mean…(is it because I am using a trial version?)
I think all of our members have used the trial version, @Rfoxed. No one wants to pay for the program as I think it’s pretty expensive. I sure wish I knew more so I could help you. Maybe @BirdsOfSore has some more helpful hints to share. Please don’t give up. We’ll get you to a point where you (& we) can see your styloids & hyoid bone.
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@Isaiah_40_31 @Jules Thanks to @BirdsOfSore I now have visuals to provide. Hopefully you guys see something, if you need more images I can get them but here is everything.
@Rfoxed - Your styloids aren’t overly long but they’re massively thick. I don’t ever recall seeing any as thick as yours in the 10 years I’ve been on this forum. My other observation is that your neck is very straight you have lost the natural curve that the cervical spine needs to properly support your head w/o pain.
Back to the styloids - elongation is only one feature that can cause symptoms. Other physical features of the styloids that can cause symptoms are thickness, angle of growth, & how pointed, twisted or curved they are. Because yours are so thick, I suspect that is at least part of what’s contributing to your symptoms. Having lost your lordotic cervical curve puts your styloids into closer proximity to the cranial nerves in your neck which exit the skull in the area where the styloids exist thus causing the symptoms you have. Your hyoid bone looks normal to me but I’m not an expert in recognizing things that may not be right w/ the hyoid.
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Great images, but sorry, I did delete them as they had your name & DOB on them! I know you’ve found it hard with the tech stuff but if you or @BirdsOfSore could re-post them with the personal info that would be helpful for your protection, or send them on a personal message to @Isaiah_40_31 & myself? …but from looking at them I would say the styloids & the hyoid bone processes look really chunky, so could be causing symptoms because of the thickness!
I just deleted the info on the images but didn’t get a chance to open the videos so didn’t see them.
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Oh wow so there is something physically causing this? you have no idea how much this has made me tear up. Doctors have treated me like I’m insane thinking anything was possibly physically wrong. Would you guys say this is 100% certain of what is causing my symptoms? Any ideas as to why my symptoms are more prevalent on my right side? cause I don’t really feel anything on my left side.
When you say support my head without pain, I don’t feel pain unless the “click” that happens is painful, sometimes it’s not. It basically feels like a bone is poking my throat , when the pain happens its a sharp one maybe that is just cause from the thickness of the hyoid?
Also what would be my next steps? I live in New Hampshire atm and I’m willing to travel to whoever to get this fixed , obviously would prefer local but I’ll do whatever it takes to get this fixed. I would obviously prefer an online appointment first before traveling to solidify diagnosis + treatement / surgeries.
Is there a surgery to actually fix “thickeness”?
Thank you guys so much for helping me this could be such a life saver for me
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Doctors unfortunately do that, and make you think there is nothing physically abnormal that is contributing to your issues (they did with me too).
Your next steps should be looking selecting a doctor from this list that I posted earlier in the thread Doctor Lists -- no discussion
Regarding the thick styloids, I would imagine they could perform surgery to make them thinner, or even take them out as much as possible. However, this would need one of the more skilled surgeons as this would be closer to the skull base, as yours are not particularly long.
Hopefully, one of the US based members can point you to the most appropriate surgeon.
I wouldn’t say anyone can be 100% but it is rather likely that it is causing some of your symptoms. Isaiah has seen many CTs of this, and if she says it’s the thickest she has ever seen, then that’s something.
Good luck
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I can’t say with 100% certainty nor can any doctor but the symptoms & visual image point to yes, your right styloid, & possibly lower down, your hyoid bone, could be the culprits. Your right styloid is more angled in toward your lower jaw than the left one which is sort of parallel to your jaw, so that may be why it’s causing the symptoms you feel on the right. A view of your styloids from the front would more clearly show their angle of growth which could also help explain why the right is more problematic.
I mentioned Dr. Cognetti in Philadelphia to you previously as he does both hyoid bone & styloid resection surgeries. He does virtual initial consults. Dr. Dewan is in Louisiana & requires an in-person initial consult. She specializes in hyoid bone surgeries. Closer to you, Dr. Annino in Boston has helped some of our members. I don’t know if he does virtual consults or not.
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The symptoms are often felt more on one side than the other, it could well be that the styloid is at a slightly different angle so id irritating different nerves. We unfortunately see that after surgery one side, the other side can ramp up a bit, whether that’s because there’s a subtle shift in the structures of the neck, or whether it’s because the worst side masks the symptoms we don’t know, but it’s worth bearing in mind if you do get the surgery.
As @virenlondon has said, your next step would be to see one of the doctors on the list, preferably one who is aware of hyoid bone syndrome as well as ES. It may be that you need the styloid removed as well as a hyoid bone trim- unfortunately we can’t say that this is causing your symptoms 100%, the only way to tell is by having surgery!
The doctors that we know of who do hyoid surgery are:
Dr. Karuna Dewan, Ochsner LSU Health Shreveport
Dr Coniglio, Rochester
Dr Marshall Smith, Salt Lake City
Dr Dinesh Chhetri, UCLA
They’re on the list, you can look for their contact details, & use the search function on here to look up discussions about them, Dr Dewan has done surgery for members recently…
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@Rfoxed - I neglected to mention the loss of lordotic curve in your neck again. Here is an image of a cervical spine w/ the proper lordotic curve compared to a straight cervical spine like you have so you can see the difference:
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oh wow yeah that is crazy actually, is it possible mine just came out straight cause I was laying down? or no?
Can they even fix that? that is wild to me and nerve racking lol
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@Rfoxed - your neck curve should be there no matter what position your body is in. It’s not fixed by surgery but by practicing good posture & sometimes w/ help from PT to retrain the muscles in your neck.
Here are a couple of YouTube videos with Kjetil Larsen discussing way to help improve your neck curve. He’s working on getting his medical degree but is very knowledgeable about the human body. His company is MSK Neurology (mskneurology.com)
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@Rfoxed your symptoms are spot on to what I was experiencing before surgery! Feel free to message me on here if you have any questions. I have a ton of posts on here too.
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I had all your symptoms.
I can clinically and from your 3d CT confirm that you have HBS. Your greater cornu of hyiod bone seems to be very posteriorly positioned , probably touching the neck vertebraes. If you have vascular symptoms it could also be touching the carotid sheath causing them.
So i had your symptoms and got hyoid bone resection surgery on the left side. 50% of my symptoms are gone.
No waiting surgery for the right side.
You probably should get referred to dr. Karuna Dewan if you are in US.
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Thank you for your input, @Solomon, it’s very helpful.
I’m glad your surgery helped. So your surgeon only did one side of the hyoid & you need the other one done? I think in the US both sides are done at once. Do you also have ES? I’m sorry if you’ve already discussed this. I’ve obviously forgotten.
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Thank you so much for responding to this and providing insight. I just sent in my CD to Dr. Cognetti and then waiting to schedule an appointment with him , hopefully he sees the same thing you do.
I truly hope this is what is causing these symptoms so I can get the surgery and get my life back. When you got the surgery did the symptoms immediately get relived? I sent you a private message would love to learn more about your story and discuss. Thanks!
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So glad that your first surgery helped @Solomon , who did your surgery?
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@Rfoxed - Another member who’s story you should read is @a_catindisguise. She’s been through HBS surgery w/ Dr. Dewan somewhat recently.
Here’s a link to @a_catindisguise & @notyouravg’s stories. Both had HBS:
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Thanks for all this, everyone in this thread has been super helpful seriously!
Quick question if you guys don’t mind answering this might sound stupid so bare with me lol. Lets just say this is HBD or CLS; can caffeine or exercise acerbate the symptoms that it produces? For instance I notice that when I drink coffee the globus / gagging sensation heightens which I presume is cause it increases anxiety / stress but would that affect the hyoid bone? or is it affecting the muscles that are already affected by the hyoid bone? I presume exercise would cause it cause the bone is moving and rubbing on the muscles.
I have been really noticing lately that the clicking and rubbing of the bone is exactly where I feel the globus so it had me curious. Looking back at when this all started, it makes more sense cause this all started randomly one day for me when playing soccer, so im wondering if the bone was rubbing on my muscles the wrong way and caused the gagging, cause I remember I wasn’t anxious when the incident happen and this globus sensation / gagging still happens even when im not nervous its just that anxiety makes it worse. If that makes sense?