Looking for investigatory surgery in the UK - Any recommendations?

I’m so sorry for your symptoms & situation of not being sure who to see for help. I would still recommend seeing Mr. Axon &/or Mr. Fish depending on what Mr. Axon says. I don’t think any doctor will just go in & search around for a problem w/o some sort of indication via scan that something isn’t right. You may have nerve compression or irritation being caused by something so perhaps seeing a neurologist would be most helpful to you. Unfortunately, I’m in the US & can’t recommend anyone in the UK.

All I can do is pray that you will be able to get help soon, & I will do that. :hugs:

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I don’t know, I can understand that it’s the only thing you feel would help, but I guess from a surgeon’s point of view they would want to have an idea what they’re looking for? It’s so frustrating for you…praying for you too :hugs: :pray:

Who’s going to cut me open then?
Been through the ringer again. ENT at imperial college london. Another Videoflurosopy. Still state they can’t see any issue in my throat / swallow yet if you literally stand next to me or feel my neck you will feel/hear a huge cluck/crack every time I swallow. It’s utterly insane that these doctors who spend their careers working focused on the throat cannot work out what’s going on or offer anything to help.

My throat is literally aching at the end of the day from the constant catching and clicking in the throat as the mechanisms in there try to move normally while being restricted by whatever misalignment has taken place in there. I’ve had this shit for 7 or 8 years now. It’s destroyed me.

Sorry for your suffering! Maybe it’s not Eagle’s. But there’s other possibilities that could cause your symptoms like connective tissues disorders, Myositis or Systemic Sclerosis (rheumatology check-up?) or muscular dysfunction? Contractions? Tendinitis? Have you thought about MSK- Neurology for second opinion?

Yes, been through all of those. It’s none of them. And yes I doubt it’s eagles either. It’s something out of alignment in the throat, something catching in there, something preventing the normal upward loop of movement when swallowing. I have no doubt it could be corrected if whatever is causing the misalignment was adjusted. I need someone to operate and try and create more space in there but due to the swallow supposedly being safe, no one wants to do that currently.

@Callmestar1 I think you need to investigate a rare syndrome called “Clicking Hyoid Bone” or “Clicking larynx syndrome”. This clicking sound was apparently by friction between Enlarged Hyoid Bone Horn (Cornua) and Cervical Vertebrae. This is what causes the pain and sound when swallowing and it can be heard as well according to this papers. There are few cases in the literature of this type of rare disease. This causes extreme depression as well since it is rare and hard to diagnose it. I warn you the first paper contains some surgical pictures.

Abstract

Painful conditions of unexplained origin pose a challenging task for the clinician from both the diagnosis and treatment perspective. This might be accounted due to overlapping symptomatology; moreover, nonspecific subjective findings push the diagnostic process to a more perplexing direction. The main loophole in their management lies in difficulty to make an appropriate diagnosis. Clicking hyoid is an extremely rare anomaly of hyoid bone which produces painful clicking in throat. Here, we report a case of a young patient presented with pain and clicking in throat which aggravated on swallowing. After a series of examinations, it was diagnosed as clicking hyoid and was managed successfully by surgical treatment. The objective of this article is not only to increase awareness of the ailment so as to validate its existence but also demonstrate the significant utility of the surgical management.

Source : Clicking hyoid: A rare case report and review - PMC

Abstract

When swallowing, a clicking in the throat may uncommonly occur, causing great discomfort and pain. This unpleasant event may lead health professionals to attribute the symptoms to psychogenic aetiology. The case of a 49-year-old female is presented, who reported an audible bilateral clicking in the throat, associated with neck and throat pain when swallowing or turning her neck. From the ENT examination and palpation of the neck during patient swallowing, we located the source of the clicking on the left. However, during palpation from side to side, the patient suffered bilateral pain. Laryngeal computed tomography with a 3D reconstruction showed a short distance between the hyoid bone and the superior part of the thyroid cornua, accompanied by posterior-medially displaced bilateral superior cornua in the thyrohyoid region. The bilateral sensation of throat pain during swallowing or palpation, in combination with our desire to maintain laryngeal symmetry , led us to a two-sided exeresis of the superior thyroid cornua.

This resulted in immediate and complete relief of the symptoms. Although it is an uncommon complaint, clicking larynx syndrome should be considered as a differential diagnosis.

Source : https://www.sciencedirect.com/science/article/abs/pii/S0385814620302091

image

Source : https://www.uclahealth.org/head-neck-surgery/workfiles/Laryngeal%20Voice%20Research/Articles/2001%20Smith%20Clicking%20in%20the%20throat.pdf
PDF Version : 2001 Smith Clicking in the throat.pdf (157.3 KB)

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Callmestar1,

Several of our forum members who’ve had the same type of symptoms that you have ended up w/ normal length styloids but their stylohyoid ligaments were calcified down by the hyoid bone. The calcification had traveled about halfway up the ligaments but didn’t reach the styloid processes. When the ligaments calcify like that, they tether the hyoid bone so it can’t move freely during swallowing, breathing, talking, sneezing, coughing, burping, hiccoughing, etc., thus the clunking sound especially w/ swallowing. We have also had a few members who didn’t have ES but had Hyoid Bone Syndrome i.e. elongation of the greater horns (cornua) of the hyoid bone. That also can cause symptoms such as yours. If you have a calcified ligament on one side but not the other, that could cause uneven hyoid bone elevation when you swallow, etc. which could also cause a clunking/clicking sound.

Do you have any CT 3D images you could post for us to look at that include your styloid processes, stylohyoid ligaments (which would be invisible if not calcified) & hyoid bone? We could at least give an opinion as to what we see.

I just found this research article online which could be very helpful: Clicking hyoid: A rare case report and review Singh V, Priya K, Bhagol A, Kirti S, Thepra M - Natl J Maxillofac Surg

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Exploratory surgery in the neck… I guess the neck is just too delicate to be cut and sliced without clear and specific target goals. I don’t want to sound rude, but I have to: one wrong slice and instead of painful swallowing you might have to live your life being fed through the tube.

Even going into the neck externally means they need to cut through the external muscle layer (platysma), which itself partially damages the muscle.

One more thing, during the surgery you would be unconscious and totally relaxed, so it is even not clear if the surgeon would know if pulling/pushing something inside would make your symptoms better or worse. And unfortunately even the best surgery isn’t an autopsy, and you really can’t expect to have your every tissue and structure dissected to see what’s underneath, as that would mean destroying them.

On the other hand… I have some discomfort, tightness and “friction noise” with my thyroid cartilage too, and almost am sure it’s due to the tight muscles, especially omohyoid, as at those better moments when I manage to relax them, the cartilage just starts sliding smoothly again.

I’d suggest you to try physiotherapy assuming you might have some variant of thoracic outlet syndrome, compressing scalenes (not in the pic) and omohyoid, while seeking for more specific diagnosis (either by invasive or non-invasive diagnostic means)

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@Callmestar1 In addition to the material I posted yesterday, I would like you to answer few questions regarding the clicking sound in the throat in order to better guide you.

  1. Lie flat on the floor with your neck extended and straight, Try to reproduce the clicking sound and let me know if you can or can’t? I expect, you will have difficulty in reproducing it but let me know anyways.

  2. Is the clicking sound produced more when turning the neck or when the neck is in flexion (tilted/facing downwards) ?

  3. Did you have a neck injury/trauma before the symptoms appear?

I will wait for your answers, my assumption is that your thyroid cartilage horns might be displaced\misaligned and touching hyoid bone or the gab between the thyroid cartilage and hyoid bone is small therefore friction between them is producing the sound.

Got this pic from the internet to show you the thyroid cartilage and the hyoid I am talking about. The arrows points the horns (sides) that might be touching.
thyroid cartilage

I got this pic from the internet as well and in image B it shows how the thyroid cartilage and the hyoid bone are touching each other - potentially causing symptoms you describe. Image A shows normal one.

image

Since CT scans are done on lying flat with potentially neck extended, it might not show when the thyroid cartilage and the bone touch and scratch each other making noises you hear. There is also variant of this which involves hyoid bone and vertebrae as I explained in my earlier post.

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Thank you. Yes there is definitely something similar to the clicking of the thyroid cartilage on the hyoid in certain positions, yet it often feels deeper in the throat than that. Right at the back of the throat at the base in the tongue where you’d typically feel food go down and the sensation of swallow. When swallowing the area essentially just feels stuck, with no movement and lack of sensation. Rather than the movement which would feel as though it takes the food down the throat upon swallowing, this area just feels as though it clenches together because it cannot move freely.

I actually sent that exact document to my ENT previously, asking them to please manually feel my neck as a swallow and allow me to demonstrate the clicking for them to at least have an idea whats happening and the next steps.

Thank you. Yes you are right in regards to your points. If my neck is extended, chin up, there is no click. If me chin is down, there is a much more obvious click. Unfortunately, I wish it was that simple but it appears more complex. Yes there is an issue with the thyroid horns possibly catching on either the hyoid or something further back. But say the thyroid horns were trimmed down, not stop them catching. I don’t think that would resolve the main problem. The whole throat seems to be out of alignment with a lack of space. so even if neck is extended or the throat doesn’t click, there remains limited movement in the throat, as mentioned in my last message. The back of the throat, base of the tongue where food goes down, seems stuck, simply clenches when swallowing, rather than the normal loop that would feel food being pushed down. It’s very difficult to describe. The click is also not always in one place, sometimes it’s felt near the front on the sides, sometimes further back by the thyroid cartilage horns. Something has reduced the space in there entirely.

There was no trauma as such to the neck but it began I believe when i used to have allergies, my outer throat always seemed to get sore over the thyroid cartilage, in then began to click and clunk which I didn’t really mind but them it seemed to shift overnight to this new misalignment, possibly due to some sore of swelling and since then the back of the throat feels as though it doesn’t move upon swallowing, just an clenching, lack of sensation of food being swallowed. The clicking, with head forward, seems to create a little more space and click past whatever is blocked the movement per say. But I 90% sure it’s not purely the thyroid horns getting caught because if so, when swallowing in an extended position or swallowing in a normal position without the clicking happening at time, it would feel like a normal swallow but it doesn’t at all, just a squeezing/restriction of movement in there.

I fully appreciate cutting me open to resolve this is not that simple. I was very frustrated yesterday when I posted and didn’t explain this. Yet at this point, the problems it is causing me, I need at least something to be done.
I tried physio for a number of sessions, specifically on this issue. Made no difference whatsoever. It can loosen everything up around the neck but doesn’t do anything for this swallowing issued which is deep at the base of the tongue.

@Callmestar1 I think it is not mystery anymore. I can confidently say, the space between the thyroid cartilage and Hyoid bone is very small and when you swallow they touch each other. The other thing that might be going on is that the whole cartilage and Hyoid bone are probably misaligned\tangled and creating strictures even when you extend the neck (creating complexity you talked about). What you feel as the base/deep of the tongue, it is because the thyroid cartilage and hyoid bone are below the tongue close to the base of the throat that is why it feels deep down the throat. You need surgery soon to resolve this and the good news is, a lot of people like you have all their symptoms resolved, so do not think that space can’t be created there and misalignment corrected. Talk to doctor soon.

I got this pic from the study I sent earlier and the areas marked with black lines were trimmed in the patients on that study. I highlighted yellow the area I think are touching and areas that are misaligned.

The questions I asked is what the doctors did on the operating table for some of these patients. So I did not imagine it. I just got from here this study. You need to take this study and show ENT surgeon. All 11 patients operated on, have compete resolution of the symptoms

image

Source : https://www.uclahealth.org/head-neck-surgery/workfiles/Laryngeal%20Voice%20Research/Articles/2001%20Smith%20Clicking%20in%20the%20throat.pdf

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Thank you and I hope you are right but I’ve seen about 6 different ENT consultants, had an MRI, CT scan, multiple ultrasounds, 2 videofloroscopy/barium swallows and still they say they can’t see the issue. They say it looks like there’s muscle tension in there but that’s it and I’m left with no sort of solution or help.

Here’s one image from the CT. I can’t find the others currently. But it the structure don’t look that close together there do they?

This is rare entity so I am not surprised that they have no clue in this case. I do not expect imaging (CT, MRI…etc) to show much unless they are done dynamically while you swallowing and take CT images to see the bone and cartilage interact. CT can be better since it sees the bones well.

The one test I asked you to do which I got from the study did come back positive and confirms that you have similar issues as some of the patients operated on in the study. If they can’t help, contact some of the folks that did this study. Nowadays, they might be an email away and they can talk to your baffled ENTs about this rare condition and educate them.

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You could be right but at the same time my most recent ENT has talked about the possibility of the Thyroid horn catching on the hyoid yet says he can’t see it on the scans. It’s as off there’s such limited movement in there, the scans are only seeing the structures squeezing together, and haven’t seen the obvious click. A scan is only a snapshot in time after all.

Does my thyroid cartilage not look too far forward? With the hyoid much further back?

Well let me start that I am not a trained radiologist but based on the limited images you provided I still think you have superior elongated of the right superior cornu of thyroid cartilage which is very close to the transverse process of 4th Vertebrae and possibly touching it when you swallow or do neck flexion.

Again you will need DYNAMIC CT with swallowing & neck movements such as flexion and extension to see if these structures are touching. I believe this static CT was done on supine position with the neck extended a bit so it won’t surprise me if they do not see much touching. Secondly, when I looked closer, there might even be more structures touching when you try to swallow but I will need more images in the axial form to confirm it. So I am confident that you have a variant of ( Clicking larynx syndrome).

Question, do you feel or hear the clicking sound on right side or left? Based on the images, I will bet the deep right side.

The pic below shows the the elongated right superior cornu (horn) that is possibly touching the 4th Vertebrae when you swallow or do neck flexion. The cyan arrow shows the elongated right superior cornu (horn) and green arrow shows the normal left superior cornu (horn). You can see the difference in the space. The green arrow shows the space where the cyan arrow, no space is shown which means it is very close and touching the neck 4th Vertebrae

Here you can see the tiny gap between the right superior cornu and 4th Vertebrae (cyan arrow points the gap.

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