@Callmestar1 I found an interesting 9 min youtube video that talks about swallowing with hyoid bone movement ( watch it fully). This makes me think what you said earlier about constriction at base of the tongue. As you swallow the Superior Hyoid & larynx (thyroid cartilage) move in anterior direction and there are a lot of moving parts as food goes down so it conceivable that the first Superior Hyoid movement is restricted by either Thyroid Cartilage Horns or at base of the Vertebrae where it might get stuck. This is to show you that static CT will not show anything unless you capture all these movements in the CT.
I also see that due to the unique curvature of your neck, your thyroid cartilage does appear forward (not aligned with Hyoid bone) whether that is contributing the tangling with the Hyoid bone or the Vertebrae as move towards each other is not clear unless we watch them. The majority of these clicks are produced due to the following condition according to the studies and I bet you fall into one of these categories or combination of them.
The clicking larynx most often is reported to be a result of a displaced cornu superior of the thyroid cartilage, an enlarged greater cornu of the hyoid bone, or a short distance between the thyroid cartilage and hyoid bone.
Source : https://onlinelibrary.wiley.com/doi/10.1002/lary.26891
I know this is getting detailed & way beyond my knowledge, but would like to add in that both the hyoid & thyroid horns do look pretty long! I hope that with the suggestions you’ve had, that it might give you some ideas…not sure with the NHS how much help you’ll get, or could you go private if you had an idea of who to see?
Private and NHS consultants seem to all be the same in the UK, with the same diagnostic tools and options for treatment. I did speak to Mr Axons secretary at one point but was directed elsewhere due to him being more “skull based” than swallowing/throat. The ones i’ve seen most recent are Mr Charles Hall and Prof Sandhu.
@Callmestar1 & I decided to post the following private message after I received CT images so that people with similar issues can benefit from it in the future.
Hi, I think I found what could be causing your clicking sound in the CT. Your greater right horn of the Hyoid Bone is both long and bulky and very close to your C4 Vertebrae Transverse process. It is highly likely that when you swallow or move your chin down, it is coming into contact with C4 Vertebrae. Your Left greater horn of the Hyoid bone is bulky but not close to the Vertebrae to cause friction sound as the space is far greater than the right horn. By the way, this falls into one of 3 categories I mentioned to in the posting earlier. This is a case of elongated, bulky right greater horn of Hyoid bone with close proximity to 4th Vertebrae possibly touching it when Hyoid moves . You will need to show this to your ENT doctor along with the study below. You also need him to manipulate the Hyoid Right Greater Horn to see if he can apply pressure and reproduce the click. the ENT needs to be a surgeon as that helps him/her with the hand manipulation.
Here are different images showing the right greater horn of the Hyoid bone with close proximity to 4th Vertebrae Transverse Process ( Cyan Arrow to 4th Vertebrae and Red Arrow point to the long, bulky greater right horn). The gap is really small and within touching distance if Hyoid bone moves during swallowing
Here is similar case as yours and it was reported in the study link attached below. This person had bilateral elongated greater horns of the Hyoid bone with clicking. If you compare the gap between the horns and the 4th Vertebrae, it is even slightly bigger than the gap you have between your right horn and 4th Vertebrae (I Marked Cyan and Red arrows to show you the bones and their distance as their thick Arrow appears to be covering the gap between the bones.
I’ve been emailing the ENT secretary for months asking for the ENT to review me. I’ve had no response. I’ve emailed again and linked them to this thread. Hopefully they will take a look.
I hope so, too, for your sake, Callmestar1! I’m so sorry for the frustration you’re experiencing due to lack of help & sincere acknowledgement that you have a problem that needs resolving. I will be praying that someone there will click the link out of curiosity & take the time to read the information here.
The ENT at Imperial college london just wrote back to me saying they cannot find a target to treat via the scans I’ve had and have discharged me. I can literally demonstrate my hyoid catches on my vertebrae when moving it and demonstrate there is an extreme catching/clicking elsewhere in the throat. I’ve asked for them to physically feel and listen to my throat in person so I can demonstrate this but they just ignore my requests.
@Callmestar1 I am sorry to hear that they neither show responsibility to investigate this nor care about that you can demonstrate/reproduce the click deep into your throat where hyoid bone catches on vertebrae. As I documented here, I agree with you and am pretty sure that your right hyoid cornu is catching on your Vertebrae given the close proximity to C4. How can he find if the problem is dynamic in nature and is triggered by swallowing. This is not Tumor on your throat. Similar cases are documented in the literature as I shared with you earlier. Just to show how some medical establishment ignore evidence, I had shown my Jugular Vein compression to Radiologist who reported it normal and he never replied to me. I moved to a much better doctor who not only found it but acknowledge what I presented to him was interested in investigating further. So I learned a lesson there. When they refuse to listen to you as patient and consider the evidence presented, it is time to move to another doctor if that one also refuses, move to another one, even outside UK if needed (online is an option for long distance doctors nowadays). The person suffering is you, not them. See this as an opportunity to perhaps find a better doctor that can meet your needs. The current one would not have cared anyways so it is better to terminate this early on than waste your precious time with him. The key here is persistence and patience. Remember your problem would only be 100% diagnosed with surgery in semi-conscious state on the operating table as they did some with patients in the study I shared here. (Looking for investigatory surgery in the UK - Any recommendations? - #28 by KoolDude). Remember always, that the clicking hyoid cases are rare, difficulty to diagnose with conventional imaging and requires a greater degree of suspicion to find what could be causing them. Most doctors won’t find it in imaging so you need a doctor that cares enough to investigate this further even if it means operational investigation.
@Callmestar1 I just did a quick search in trying to locate doctors in Europe who are familiar with this rare Clicking Larynx/hyoid bone. These three doctor ( Michael Jungheim, Simone Miller
& Martin Ptok) are located in Hannover Medical School, Germany and have written a number of studies in swallowing and throat problems. One of the study is (Clicking Larynx Syndrome). So since they are familiar with this condition and are located in Hannover, Germany, you might want to contact the Hannover Medical School (Hannover Medical School | Universities | Study | Science & Education) and tell them your condition and the doctors you are interested in seeing.
You can also try this spine clinic (Larynx Syndrome Literature) in London who posted their study and see if they have anyone that treat or is familiar with this rare condition. If not, contact the Doctors in Hannover.
Here are the studies of those Doctors in Hannover and as you can see them, they all involve around the throat and swallowing, so these guys are expert in your area of interest.
One final note, You need to gather the studies and images and create an easy to understand document that includes your symptoms and couple of images in here ((Looking for investigatory surgery in the UK - Any recommendations? - #45 by KoolDude)) that you can send to any doctor any where in the world. This way, you do not have to remember all the symptoms and repeat it every time you meet a new doctor. It did work for me.
What a travesty in the medical world, Callmestar1. I’m so thankful for our members like @Kooldude who have done a lot of research & are able to encourage you & give you names of doctors who are more likely to be helpful!
I all still struggling with the same symptoms. I had a look at my barium/video swallow again recently.
Does this look normal to you? This front to back view. The barium can clearly be seen to divert to the left hand side of my throat upon swallowing. When other barium swallows I’ve seen for others that are normal, show the food/barium traveling straight down the centre.
I’ve attached photos of the video swallow showing the barium traveling down the throat. Any thoughts? I was discharged from charring cross despite them seeing this.
Thank you again. I contacted the doctor who wrote the paper. He recommended two consultants in the UK. One of whom I’d already seen and the other who I paid to see a couple of weeks ago. He felt my neck for about 10 seconds, I demonstrated the click and all he did was say it’s muscle tension so let’s try physio. Which I’ve already had multiple times with no improvement.
I left him a copy of my scans so hopefully be might have something more to add once he’s reviewed those but the initial appointment doesn’t fill me with hope. He will also see the images I’ve justed attached to the last post. I can’t see how anyone can think that is normal or not attempt to find a solution.
The whole area is compressed. It’s clicking, catching. Food clearly having to squeeze down a gap on the left hand side of the throat. Yet no one seems to be able to help.
That is pretty odd, Callmestar1! I’m in your camp in not believing any doctor would look at those images & say, “All’s good!” That’s ridiculous!!!
Have you had a look at our patient self-advocacy info on the home page (click on the butterfly icon above left)? There might be some info there that could help you make better headway w/ one of the doctor’s you’ve seen about this.
That is so frustrating, even when you’re paying to see a doctor & they’re not helping you…I agree those scans look like something’s up, not good that they’ve discharged you after looking at that! I hope that when he looks at the scans maybe he’ll be more helpful…Sending you a hug as it feels like you’re getting nowhere currently
I’m desperate for help. I’ve developed M.E. and an ongoing dehydration issue which I have no doubt is linked to the almost constant stress this swallowing issue has caused.
I’ve wasted years of my life being limited by this. I wake up every single day feeling dreadful. There must be someone out there who can attempt to help.
We may well have mentioned it before, but quite a few people have had their scans looked at by Kjetil Larsen at msk neurology- is that a possibility? I think he’s doing a medical degree now so not sure how much he can do at the moment…
Here’s a link to the discussion about him: New Here … not diagnosed yet UK - General - Living with Eagle
I just wish there was more we could do to help you
This is a very difficult & worrisome time for you, Callemstar1! It’s made more difficult for you by how long it takes to get medical appts & referrals which go nowhere once you see the doctors. Is there anyone else your PCP might know of? I’ve forgotten if you’ve seen Mr. Axon about this?
