ES and maybe Hyoid Bone Syndrome?

[caiocarv]

Hello everybody, long time lurker here!

For a quick summary:

I started feeling symptoms that won’t go away in March/2020. It started with a feeling of a lump on the right side of the throat that came with a flu and never stopped and now my right side start aching every time I start speaking.

Went to a lot of ENT’s and any of them diagnosed my Eagles. I treated it as rhinitis and sinusitis and acid reflux and it never solved my symptoms.

It was the pandemic time too, so some ENT’s were even telling me it’s nothing, being just anxiety.

It’s common sense of the ENT’s that the flesh of my throat is ok, just with some irritability next to the vocal folds, being the reason why every ENT says it is reflux, but I don’t feel anything related to it anymore after the treatment (had esophagitis).

I was with orthodontic braces by the time the symptoms began, because I had a deep bite.

This year, I went to an TMJ dentist and, seeing an Cone Beam exam, he pointed that maybe it’s ES.

So, thanks to this amazing forum and the post of Swimmer’s, I went to São Paulo to get a consult with dr. Romualdo, that told me to do a CT Scan and touched my throat and felt both styloids, arguing that it’s suggestible that I have ES, but he can’t guarantee it’s the reason.

So, comes to this moment now. I’m having some physiotherapy because of TMD that I have, along with some clicking on my right ear when I raise the soft palate and for the tension I feel on my right side, from the TMJ to the neck, and I’m wondering what to do.

I feel like I’m gonna risk doing the surgery to remove my styloids, the doc said it’s better to remove just the side I have symptoms, but I want to have both removed.

I want your opinion about my styloids and my (possible?) elongated hyoid bone, that took my curiosity being a common topic here too.

Summary of symptoms:

• Lump on right side of throat
• Pain when speaking and sometimes when swallowing
• Clicks on right ear
• Both side tinnitus (even before the other symptoms)
• Bruxism
• Stiff neck and masseter on right side

And those are the one I can remember now.

Some pictures:

Thanks for this wonderful forum that helps everybody that is called crazy!

[Isaiah_40_31]

@caiocarv ~

Welcome to our forum. I’m so glad you’ve posted to let us know your story & your situation. Your 3D images are great & clearly show 2 elongated styloids. I see what could be some calcification of the lesser horn of your hyoid on the left side, and the greater horns do look a bit long, but I’m not sure they’re too long. I’ll leave that opinion for one of the members who’s more experienced than I at looking at these images.

From my perspective, it isn’t bad to get your styloids removed separately for two reasons: 1) Styloidectomies cause significant swelling in the throat & neck post op so many surgeons opt to remove one at a time leaving 3-6 months for your body to heal before doing a second surgery if necessary. 2) Sometimes removal of the most symptomatic styloid is enough, & the second side doesn’t need to be taken out as symptoms subside after the first surgery thus you save yourself the extra pain of a bilateral surgery & recovery.

I’ve annotated the image of your left styloid to show what might be a section of calicified stylohyoid ligament extending from the hyoid bone.

I expect you’ll get more opinions. I hope we can help you make your surgery decision more informed. Glad you found a doctor to help!

[caiocarv]

Thanks for the quick and awesome reply, Isaiah!

I see! Reading others cases I wrongly thought that the recommended is always removing both sides.

Maybe I’ll do just one, but the reason I wanted to remove both is because it would be cheaper for me, as I wouldn’t need to pay all the accommodation and anesthetic bills again and would suffer just one time hahahah!

I’ll talk with the doc about the hyoid bone and see if he has some experience with it too.

Thanks again for the reply!

[Jules]

I second @Isaiah_40_31 's opinion/ advice! Others on here are better at reading the CTs, but it looks to me as if you could have compression of the IJV by your C1 process on the right side, so that might be something to ask the doctor about too, although you don’t mention vascular symptms…
It is a tricky surgery, and there are risks, so be aware of that, if you’ve not read up on post operation stories it might be an idea to have a look at that so you know what you’re letting yourself in for. Unfortunately no doctors can guarantee what symptoms are ES & which ones will improve after surgery, only time will tell that…
Let us know how you get on with Dr Romualdo if you see him again

[Isaiah_40_31]

I totally understand that the cost for surgery especially when travel & accommodations are added in can be prohibitive for people. If he’ll do bilateral, that can be an option, but as I said, more often ES surgery is not done that way.

I didn’t think to look for IJV compression, but I agree w/ Jules it looks like you could have that problem on the right side. Worth asking about. It’s great that you don’t have vascular symptoms though.

ES Information: Background, Anatomy, Styloid Length, Angulation, Classic and Vascular

Eagle Syndrome Information: Background- Including Anatomy, Classic or Vascular?, Length Vs Angulation: Disclaimer: These answers to common questions were put together for new members to gain a head start in finding information about Eagle Syndrome; to give you confidence to discuss issues with your medical team and to encourage you to research issues further for yourselves. It was compiled by a volunteer Moderator, who does not claim to be a medical professional, merely an informed observer and…

[caiocarv]

Thanks for the advices!

Will definitely look into it and keep this post updated as I proceed.

[KoolDude]

@caiocarv First of all it is harder for a trained radiologist to conclude anything from a few 3D Images and we, as fellow patients trying to help each other with what we have learned from ES & HBS in our experience, have even more difficulty to discern anything meaningful from few images. Having said that, I can see you have what I believe to be CTV images since the Veins are more visible than arteries. So it is bit difficulty to see any artery interactions with the bones (Styloid & Hyoid). In terms of Styloid, I agree with @Isaiah_40_31 and both of them seem to be elongated (left appears to be longer than right with some calcifications). I also see right Internal Jugular Vein is compressed by the C1 more than the Styloid. There is also some visible collateral veins, typically indicative of impaired Jugular vein drainage since the CTV was done lying where almost all drainage happens via IJV. On the left side, I do not see any significant IJV compression by either the Styloid or C1. Styloid might be touching the IJV a bit at the top.

As far as the Hyoid bone/Thyroid Cartilage is concerned, it is harder to conclude anything from these limited images. You will need to look at the axial images to see if either Hyoid horns or Thyroid Superior Cornu are displaced/calcified and angled towards the throat to cause symptoms. These are not easily seen unless you scan through a series of CT slides around the throat area. Since you have throat issues like lump feeling, I would say get flexible laryngoscopy to see if those bones poking in your throat area because the CT would be more suggestive but flexible laryngoscopy can even show inside the throat with dynamic movement of the neck.

Red arrow pointing to Collateral drainage to help with the impaired Jugular Vein by the C1 (Cyan Circle).

[caiocarv]

Holy! I didn’t pay so much attention without the visual pointing to it.

My C1 is literally smashing my jugular vein! I’ll,
without a doubt, point it to the doctor on the next consult.

About the flexible laryngoscopy, it’s the one that insert a camera through the nose to see everything until the vocal chords, right?

If it is, more than one ENT made this one with me while telling me to say AH and EH and swallow too, and none of them told me that there is something strange. I even had one recorded but unfortunately I lost it.

Is it possible that the C1 compressing my vein can cause me do feel this lump?

[KoolDude]

@caiocarv

flexible laryngoscopy

Yes that is the one I was talking about. Well, sometimes they do not pay attention to the little pumps or protrusion which could give a clue if there was a Hyoid/Thyroid Cartilage Superior Cornu slightly protruding it when you swallow or move your neck. Well, let us assume they did their job and could not find anything medically relevant. In that case, am not a doctor, but it is highly unlikely that C1 compression of the Jugular Vein could cause lump-in-the-throat feeling. Can’t think of any mechanism now. Lump in the throat feeling or Globus Sensation (medical term) can have numerous causes but the only plausible explanation with regards to ES, is that if one of your Styloids is messing with the glossopharyngeal nerve (GPN) which can produce Globus Sensation, Throat irritation, hoarseness…etc. So at this point it is just guess but possible.

[caiocarv]

I see. The doctor just felt the bilateral styloids behind the tonsils, didn’t say anything about things that shouldn’t be there around my throat.

Thinking further, this compression may explain my feelings of light head and some dizziness that happens sometimes without a reason.

One ENT told me this could be Labyrinthitis, but the compression makes more sense.

I really think that the orthodontic treatment could be the responsible for everything I feel, as it changed neck and face bones and muscles, too bad most dentists don’t give a damn about this possibility.

Thanks for all the help, will keep updating as I advance.

[caiocarv]

Hello guys!

Not yet an update about the surgery plan but new symptoms that I perceived and want to know that others had it too.

Isaiah told me in another post that the styloids cause crackling songs in the ears after I said that felt some that were different than the ones caused on the TMJ.

Right now, I perceived that my left ear do spasms when I heard high sounds, and does the same kind of spasm when I rub my hand along the muscles of my face, like a feeling that it’s going to the original place after.

The crackling is louder in my right ear, and I can make it happen raising my soft palate, I guess that it moves the muscles around the styloid and then it crackles. When I’m laying down on my right side, I can clearly hear it clicking when I do the palate movement and another click to go back to place.

I perceived too that moving my head from up and down while relaxing my jaw causes a not so loud click in both sides too.

I’m more certain that surgery is the way as each day passes because, unfortunately, our bodies doesn’t have what it takes to tear make it go away by itself.

My next post will be talking about the surgery as I advance on it.

Thanks for all the support!

[Isaiah_40_31]

Hi @caiocarv,

Thank you for the update. I’m sorry for your new symptoms.

What you are describing are symptoms that some people have with ES. The glossopharyngeal nerve innervates the soft palate, & the trigeminal nerve usually is what causes the ear symptoms, but the two are in close proximity so when you move your palate, it may be irritating both nerves which causes the crackling sound & the ear spasms you’re having.

Another possible scenario is the elongated styloids move a little when you move your soft palate because there are small muscles that contract during palate movement which could be causing styloid movement which could bring them in contact w/ the nerves causing your ear symptoms.

I hope others will give their opinions as well. I’m glad you’re planning to have the styloids removed as that should help reduce or stop the symptoms you’re having.

[caiocarv]

Thanks for the support as always Isaiah!

And it’s fine, after 2 years of suffering, I made peace with this condition. It is what it is, no benefits in fighting it mentally.

Hope to update it soon!

[caiocarv]

Unfortunately I come with bad news.

Since a couple of days ago, I’m feeling a sharp pain on my left side of throat everyone I swallow.

I got a hard flu that attacked my throat and went to some chiro and physiotherapist that manipulated my neck and I get those crackles.

I don’t if maybe the movement could made the styloids hurt me or maybe my throat got sensible and now it’s feeling the styloid more.

Got some appointments with many neck surgeons this month and next and will look forward to one that can make the surgery and then will update.

Peace and thanks for the support!

[Bc2]

I get this question all the time. Would you say you have tinnitus or pulsatile tinnitus (Heartbeat)?

[caiocarv]

Yeah, the tinnitus is permanent in both ears and the pulsatile one are too, but not always. It generally comes when I’m lying with my head on the pillow I hear in the one that’s touching it.

[Isaiah_40_31]

Hi @ciaocarv,

It is a good idea to stay away from chiropractic neck adjustments or maniputlations once you have been diagnosed with ES because the “neck snapping” that is sometimes done can cause symptoms to worsen because of the reasons you suggested such as movement or even fracture of the elongated styloids which can cause them to rub or press more deeply into the nerves that are causing symptoms. A neck adjustment w/ an “activator” tool which is very passive is acceptable but many chiropractors only use manual manipulation which is too aggressive when one has ES.

You can try icing your neck for 15-20 min at a time w/ at least 45 min between. We recommend buying two or three gel ice packs with covers so you always have a cold one to grab when you need it.

To help your tinnitus at night, have you tried sleeping with your head elevated - that is, either using several pillows in a sort of sloped position so your head is above your shoulders but your shoulders are also supported? Another option is to buy a wedge shaped pillow & arranging bed pillows on it to help support your shoulders & upper back while sleeping w/ your head elevated.

I’m glad you have some appointments coming up & hope & will pray that you’re able to see a doctor who can help you.

[caiocarv]

Will definitely try the ice pack and pillows! Yesterday I was really getting scared of swallowing because the pain was too sharp.

Today is a little better, thank God.

I will stay away from chiro for now.

I have tinnitus for years, way before having the first symptoms, I got used to living with it, so it’s not that bad.

Thanks for all the good energy!

[caiocarv]

Hello! I come with a little update about my situation.

I went through 4 appointments with head and neck surgeons and got mixed answers.

The first two was more into the possibility of surgery, with the second one even asking me for the documents so he could schedule it.

The third and fourth told me that they are certain that the styloids aren’t the responsibles for what I’m feeling, tending towards my cervical and TMJ, as the orthodontic treatment could have given problems to my muscles in the region of head and neck.

The fourth doctor did a laringoscopy to see if he could see the bone pointing in my throat as I speak and he didn’t see it, although the others did a touch test and felt the bones.

I’ll start with a TMJ treatment, with shield protectors while sleeping and physiotherapy 2x a week for some months.

I’ll try to end my chances with some specialized cervical orthopedists. If after all this the symptoms continues, I’ll take my chances with the surgery, because the doc that’s willing to operate too can’t be certain about this.

Tldr: will keep the surgery in standby and try some more with non invasive procedures.

[Isaiah_40_31]

Your approach to this sounds very good @caiocarv! It’s always best to try other things before surgery. You may get some good results, but if not, you’ve left the door open for surgery which is also good.

No doctor will guarantee good results from ES surgery as they cannot predict how a person’s body will react to surgery or how well nerves that have been compressed/irritated for some time will recover. They always hope for a good outcome for their patients as do we, as patients.

Please come back periodically & let us know how you are doing & if the non-surgical therapies are being helpful.