PAin on Phonation, physical exertion, and my Story

[virenlondon]

Hello everyone,

First of all, thank you to the people responsible for this forum, as I feel I have been alone for the last 4 years. I wanted to share my story here, as I’ve been dealing with intense throat pain for nearly four years and finally may potentially have the answer. Its a long post, but essentially, I wanted to know if anyone experienced pain on phonation or physical exertion. If so, would love to hear your experience My journey started in 2020 after I sustained a direct blow to my throat from an elbow while playing basketball.

Symptoms and Pain

Since the injury, I’ve experienced severe throat pain that’s triggered by speaking (phonation) and any physical exertion (that I believe requires head stabilization). The pain is so intense that I no longer speak, even though I can physically do so, as it triggers significant discomfort. Activities like swimming, weightlifting, cycling, and even lifting my young son cause major pain around my throat. Interestingly, the only exercise I can manage is running, as it doesn’t require stabilizing my head.

These symptoms have severely affected my quality of life, impacting everything from speaking to daily physical activities. I used to love socialising and keeping fit. Now I do not ever speak and my gym life is over.

Extensive ENT Evaluations with No Answers

Over the past few years, I’ve seen more than 15 ENT specialists and have undergone numerous tests, including 5 MRIs, 2 CT scans of my anterior neck, 7 laryngoscopies, functional testing, and EEG of the throat muscles. Despite all these efforts, no abnormalities have been found around my larynx, and no diagnosis has been able to explain the restrictive pain I feel during phonation and exertion. Some doctors said it could be GERD (even though they know this issue causes physical restrictions), some said it could just be psychogenic pain, and some said oh you probably just have a bit of inflammation, and loads of others. I paid thousands of pounds for these doctors opinions, and had so many different types of medicines (prior to this injury, I barely took medicine for anyhting). Others said you just need speech therapy, which I did for months with no improvement. In fact, because I had to make sounds, it just caused more excruciating pain

TMJ Findings and New Suspicions

Due to the lack of answers and severe impact on my daily life, I recently underwent an MRI of the surrounding throat structures (cervical spine, TMJ). The TMJ MRI revealed some TMJ issues, so I booked a session with Harley Street Maxillofacial surgeon, who instantly told me the TMJ would not be causing this, but I potentially have an issue with my styloid process or stylohyoid ligament. In fact, he looked at some of my previous scans which did show it elongated. I also have a (what feels like a) bony part sticking out near my jaw which causes pain when touched. He thinks this is my styloid process, and ordered a high resolution CT scan of the area. I will get results in the next couple of days. I really am hoping I have finally found what has been causing these horrible symptoms (I have also had to pretty much give up work, except for some online freelance stuff).

Anyway, I will update the post after I get my results. If it is indeed confirmed that I need a styloidectomy, or a partial cut of it, which surgeons in the UK (preferably London) have decent experience? Also, I am self pay , so what would be the rough price (bearing in mind this could be Harley Street) of the procedure?

Seeking Support and Experiences

If anyone here has had similar symptoms—especially severe pain with speaking or activities requiring head stabilization, I’d be very interested in hearing your experiences. I haven’t seemed to find anyone that exhibits/has exhibited these symptoms .After years of searching, I’m hoping this new development may finally lead to some answers.

Thanks for reading guys

[JugularEagle]

Welcome to the "mysterious pain Doctors cant figure it out " club. Mine was identified by a Dentist who had seen a case of it. You can use Radiant 3d viewer if using PC on existing CT scan. If you are computer literate you can then use Blender program to show what is happening when you turn your neck. Some studies have done this. I cant figure Blender out.

I suspect you will be amazed at what you see and be shocked so many missed it.

If you use a MAC the Bee dicom viewer can do similar to Radiant.

There is a Doctors list here for some known Doctors who deal with this issue.

In the US we have federal laws dealing with estimates for health care. Even with that some people are struggling to get cost estimates.

I will say to you what i have said before. Mayo Clinic has been ranked as the number 1 hospital in the world but they dont seem to know what to do with Eagle Syndrome. The famed Harley street may not be where you end up for this surgery. Check out the Doctors list for some ideas. On that list is the story about a man who spent 10k trying to get diagnosed but it took Google for him to figure it out. He then got covered by NHS.

It doesnt matter what country a person is in the story is often the same with Eagle Syndrome including the abject despair after the rounds of testing and Doctors appointments. Sometimes a person gets lucky like Jules but i think that is the minority.

[virenlondon]

Thanks.

Funny you mention Google; for me it was never ending conversations with chatgpt that got me to go to a maxillofacial surgeon and see if he could provide answers…as mentioned above, I saw so many ENTs about this.

Obviously my thinking (as it stops me talking) is it has to be some sort of throat issues, so that’s where I stayed for many years.

The annoying thing is I told (and pointed to the region) each and every ENT that i get a lot of pain in the region just to the right and above my hyoid bone.

It was only about 3 or 4 weeks ago that I figured out I could hit that same spot (and more clearly) by touching what feels like a protruding bone just to the right the side of my lower right side teeth.

I mean, surely one the many ENTs I saw could have told me to attach least check the styloid .

But yeah, it’s not good that chatgpt and Google are at times better at diagnosing than specialists. Also, NHS has just been so slow. 6 months for an ent appt, then they just refer me to elsewhere, then repeat.

Not sure whether if they do confirm the diagnosis that the NHS will accept me, and if they do, how long to wait.

[virenlondon]

Also, I have the links to all my previous scans… I don’t mind putting them up, but I would rather wait till this new CT scan images and report come out, as my maxillofacial doc said the previous ones were not specifically targeted at this, so not super clear.

[JugularEagle]

While you wait you could download the viewer and just see for yourself. Radiant is free for 30 days. You can practice with all the different settings and movement.

It might give you some plan as how to build a case for fast tracking NHS. For example, if it shows severe constriction of a carotid artery or jugular. I dont know what it takes to fast track at NHS

I would put all my scans through it just to compare. One might pick up something that another missed. You need all the images in a scan to get the best 3d look.

Also, many Eagle people have multiple things going on so you definitely should look at all the scans in case it picks up something else.

[JugularEagle]

No. Look at my scans on the "Oh boy do i need help with my scans " thread. I cant link it on my phone. Those are done with Radiant.

It helps those of us who dont have a clue how to read the scans. Doctors use Radiant as well but my neurovascular surgeon didnt even seem to be aware that 3d viewers exist. He didnt even seem to be aware that you could ask for a 3d scan from the lab. He said, “You mean like with AI?”

[virenlondon]

Oh I see, those pictures look so clear. Unfortunately, I have no idea what I am meant to be looking for, but I will give it a go.

Thanks…

[JugularEagle]

Radiant is user friendly. Experiment with it and you will figure it out. Post ones similar to mine and there are people here who may spot something.

You can look at the reports for those scans for any thing they found to see if they referenced the particular image. Your next report will probably be more instructive.

[virenlondon]

And this is the 3d image from the CT angiogram down in August on my online viewer.

[JugularEagle]

Will it let you rotate it to view from side? There may be radiant program for android phone.

Nope. Just looked. No Radiant for Android

I think your name is showing up on these scans. I think there is a way to anonymize it.

[virenlondon]

Yes, can rotate.

[JugularEagle]

The rotation view is blocked at skull area right where you need to see it. Try to see if it lets you view through the underside similiar to mine.

[Mod_support]

Jackie-
@virenlondon wanted to let you know how appreciative they are of all of the assistance you have offered with sharing the images. They couldn’t post anymore today as a new user so emailed ModSuppport

Sharon

[Jules]

Hi @virenlondon, & welcome to the site!
So frustrating that you’ve been seen by so many doctors & been dismissed or fobbed off, that’s crazy, but sadly not unusual!
I can’t see the styloids clearly in your images, so can’t comment on that, but hopefully when you get the new CT done we can have a look…it will be interesting to look at the hyoid bone processes & to see if there’s any calcification on your stylo-hyoid ligament too given that it was a blow to the throat which set your symptoms off.
We have definitely had members whose voices have been affected by ES, we’ve had some professional singers who have had to stop until after surgery & also several teachers , so ES can certainly cause pain talking. If you use the search function to look up ‘professional singer’, it will come up with lots of discussions!
Pain exercising is common too, and lifting. Swimming (if you’re keeping your head up & out the water), & cycling will have your head in an awkward position which aggravates everything in your neck- I had to give up cycling which I loved because of the neck pain, & I believe it contributed to a prolapsed disc in my neck, which I think then contributed to vascular ES…
The best/ most experienced surgeons in the UK are Mr Axon at Addenbrooks in Cambridge, & Mr Hughes at UCH London. Both do NHS and private practice. For NHS treatment Mr Hughes would probably be the best to get referred to as Mr Axon has a really long waiting list, & doesn’t seem to be allowed to do as many ES surgeries as he was doing before, & has strict criteria for when he is able to offer surgery. He also shortens the styloids when needed, but I don’t know that he removes stylo-hyoid calcified ligaments so that would be something to consider if yours are. Mr Hughes I believe will & will look at hyoid bone resection if necessary.
Here’s a discussion about Mr Hughes:
First appointment with Dr Jonathan Hughes - General - Living with Eagle
Several members have had surgery with him recently, you can click on their avatars to send them a private message. I don’t think any of them have had a complete ‘cure’ with all symptoms going, but then many of us have had other neck issues alongside ES & sometimes ES is one step in the process…
As @JugularEagle says, I was very lucky & had really good results from my surgeries with Mr Axon on the NHS, my surgeries were a few years a go so before he started having to refuse some patients. I would definitely recommend him if you were to see him …

[Isaiah_40_31]

@virenlondon - Please make sure to edit all personal information out of your images before you post them here. I’ve annotated the first image you posted to cover the text as I couldn’t read all of it so wasn’t sure what was personal & what was general information. I see you’ve taken care of that on the subsequent images based on @JugularEagle’s recommendation.

The image you sent is a great picture of your internal jugular veins. The area in the middle of your neck where your thyroid cartilage is looks a bit messy, but again, I’m not a doctor, so this could be insignificant. Your styloids aren’t visible in this image or the other two you posted.

[Isaiah_40_31]

I’ve slightly annotated the second and third images. In the second image, the R greater horn of your hyoid bone looks very close to your spine.

In the third image, the L greater horn appears to be in contact w/ a vascular tissue which could be the external carotid artery, but it’s pretty diminutive if it is. The contact may not be causing significant compression but that can change depending on head/neck position.

Hyoid Bone Syndrome can also cause vocal trouble and has many similar symptoms to ES. The two problems can also occur simultaneously though it’s somewhat rare.

The vagus nerve is the nerve that innervates the vocal cords & w/ a blow to the neck, it could have been injured & is continuing to be irritated by an elongated styloid or hyoid bone.

Vagus Nerve Image.docx (81.7 KB)

2-Minute Neuroscience: Vagus Nerve (Cranial Nerve X)

[JugularEagle]

I was just providing a little help until the real experts wandered through to take a peek at the images

[virenlondon]

My CT results are out.

There are bilateral elongated styloid processes/calcified stylohyoid ligaments. They measure 6 cm in length bilaterally. There are discontinuous segments in their mid portions (only minor lucency on the right but a 3-4 mm segment on the left) which likely relate to demineralised segments of stylohyoid ligaments and a pseudo-articulated classification. The tips of the styloid processes/calcified stylohyoid ligaments lie at the lateral borders of the palatine tonsils. There is a normal appearance to the hyoid bones with slightly prominent greater cornua. Note is made of left orbital floor fracture with inferior deviation of the fracture fragment fragment (hammock type). The fracture line extends to the infraorbital nerve canal. There is some inferior deviation of extra conal fat and minor distortion of the left inferior rectus muscle. There is also some distortion of the left posterolateral wall and anterior wall of the left maxillary antrum with medial bowing of the left lamina papyracea on a posttraumatic basis. There is polypoid hypodense peripheral mucosal thickening and some central inspissated hyperdense secretions within the left maxillary antrum. The laryngeal framework is of normal appearance. In conclusion, there are elongated styloid processes/calcified stylohyoid ligaments with a pseudo-articulated morphology (without any clear evidence for displaced fracture). There are previous left midface fractures as described.

I asked Chat GPT what it all means

ChatGPT

Here’s a breakdown of what this CT report likely indicates:

1. Bilateral Elongated Styloid Processes/Calcified Stylohyoid Ligaments

• Description: Both styloid processes are elongated (6 cm each), and there is calcification of the stylohyoid ligaments. This elongation could compress surrounding nerves or vessels, potentially explaining symptoms if related to Eagle Syndrome.
• Discontinuous Segments: The ligaments have small gaps in the middle sections, possibly due to demineralization, giving a “pseudo-articulated” (joint-like) appearance. This means the stylohyoid ligaments may appear segmented or partially separated, especially on the left side, where a 3-4 mm gap is noted.
• Position: The tips of the elongated styloid processes are close to the palatine tonsils, which may place pressure on nearby soft tissues or nerves.

2. Hyoid Bone and Cornua

• Normal Hyoid Bone: The hyoid bone itself appears normal, but the greater cornua (horn-like extensions on either side) are slightly prominent. This prominence doesn’t seem to indicate a structural issue but is noted as an anatomical variation.

3. Previous Left Orbital Floor Fracture and Related Findings

• Fracture Description: The CT notes a prior fracture in the floor of the left eye socket with the fragment shifted downward in a “hammock type” pattern. The fracture line extends to the infraorbital nerve canal, which may affect sensation in the cheek and other areas.
• Surrounding Effects:
  • Fat and Muscle Deviation: There is some downward deviation of extraocular (eye area) fat and minor deformation of the left inferior rectus muscle, which may impact the eye’s movement or positioning slightly, though there’s no indication of severe functional impact.
  • Sinus Wall Distortion: Trauma to the left maxillary sinus has caused changes in the shape of the walls, including slight inward bending of the lamina papyracea (the thin bone between the sinus and eye socket).
  • Sinus Mucosal Changes: The left maxillary sinus shows areas of thickened mucosa and denser secretions, likely from past inflammation or sinus issues due to the trauma.

4. Laryngeal Framework

• The laryngeal framework appears normal, indicating no structural abnormalities around the voice box.

Conclusion

• Elongated Styloid Processes/Calcified Stylohyoid Ligaments: This finding may be related to Eagle Syndrome, given the length and position of the styloid processes. The pseudo-articulated segments suggest some structural irregularity but without clear fractures.
• Old Midface Fractures: The report notes healed fractures in the left midface area, including the orbital floor and sinus walls, with some residual changes but no major immediate concerns.

Next Steps

These findings suggest possible anatomical factors (elongated styloid processes) that could be compressing nerves or soft tissues, potentially causing symptoms. Your specialist might consider a styloidectomy or other interventions if they confirm Eagle Syndrome and link it to your symptoms. Further consultations with ENT or maxillofacial specialists can help determine whether any treatment is needed for the orbital or sinus changes.

I am surprised most of the findings has come on the left side, when most of my symptoms that I feel are on my right side. I will probably have a follow up consultation with the doctor who referred me, but I have asked my wife to see if she can get me an appointment asap with Dr. Johnathan Hughes (as I do not speak). A couple of opinions will be better than one.

[JugularEagle]

I am impressed with the detail. Disheartened by all the imaging and testing you went through that missed it. Styloids can cause such pain for patients.

People have come on here with reports that dont even measure the styloid. You definitely need to get to an expert ASAP. It seems you should be able to get NHS to cover this.

Will be interested to see what isaiah and jules say . at least you have scientific words now to use to look up studies and to back up your case.

[Jules]

Good that you have such a detailed report now! Given your symptoms, it seems likely that you have ES, and interesting that your hyoid bone processes are enlarged too, as we suspected. If you see Mr Hughes & he can help you, I would check how much he’s prepared to shorten the styloids, check he’ll remove the calcified stylo-hyoid ligament and also ask his opinion on the hyoid processes, & whether he thinks these could be causing symptoms & may need shortening.
Re which side looks worse in the CT, it depends on the angle as well as the length of styloid, so if you’re finding more trouble with your right side, it could be it’s slightly more angled, or thicker, which can then irritate different nerves or blood vessels.
I hope that you can get some help from one of the doctors!