I did contact Mr Axons secretary at one point but she recommended somebody else. I don’t believe mine to be eagles syndrome but more of an obscure throat cartilage/muscle issue, which isn’t Mr Axons specialist area I’m told. I’ve supposedly seen two of the best in the UK and all they did was feel my neck for 5 seconds, then say let’s try physio/speech and language therapy. For which I’ve tried multiple times and it does nothing.
There is clearly an issue with my swallow and it’s causing my a great deal of almost constant discomfort, but they class my swallow as ‘safe’ and therefore it doesn’t appear they want to explore this any further or look at other options such as surgery.
While I sympathize with you, I think you need to advocate yourself more aggressively as this is a rare syndrome and most of the doctors are not familiar with it. As I have looked into your case closely, I do believe you have an issue as I documented in my previous posts but it won’t show up in barium swallow exam since that usually shows if there is a blockage of some kind like a tumor or an object in the throat (see the case below in the underlined text as an example to show as exmple). You have complex, dynamic movement issue at your hyoid greater horn with or without the thyroid cartilage involvement as I have documented here (Looking for investigatory surgery in the UK - Any recommendations? - #45 by KoolDude). Unfortunately, this problem won’t go away on its own and you will likely need a surgery to get a final diagnoses and lasting treatment as many cases have been diagnosed and treated this way. Doctors will keep dismissing you as well as most of the exams and imaging might not reveal anything that will necessitate a surgical intervention. In my opinion, you need an aggressive strategy but repeating old tests, or muscle therapy won’t be enough. I would say go back to the German Doctors and tell them you need an intervention surgery if the folks in Britain won’t do it and explain that you exhausted all other interventions. Wish you all the luck.
It wasnt shown on my scans or anything, but my styloid was fused with my hyoid bone. In my surgery they had to remove the styloid from the hyoid as well. My throat also clicks, in fact my whole neck does, pretty much every part of it. If I take my hand and move my Adam’s apple you can hear a very loud clicking sound, also like you my neck sometimes clicks when I swallow, but this doesn’t happen very often. In the removal of the right styloid this issue wasn’t fixed, but I am hoping when I get my left removed it may. I do think it has something to do with the hyoid. I am not nearly as educated as the others here, but maybe its possible your hyoid is also fused with the styloid? (Again I have no idea if there is validity to that statement, just that I also have a similar clicking in my throat). I wish you all the best.
Thanks again for your valuable support and input.
I have literally shared that exact quote and paper with the consultants I’ve seen. Problem is, you’re seen for a consultation, little time, no exploring the intricacies of what might be going on in the throat but simply the same crap, instantly jump to the box tick conclusion of ‘muscle tension’ and offer nothing more at the time. They do sometimes mention their awareness of surgery for clicking issues but say it is rarely performed and often makes matters worse. Then when I attempt to share such statements and medical papers such as the one you just posted, I’m sending that via email and rarely get a direct response or comment on what I’ve sent. They simply say they can’t find a target to treat and then discharge me. I think they know there’s something wrong in there but just don’t know how to fix it and therefore just resort to the muscle tension diagnosis.
I am waiting to hear back from the most recent consultant I saw on his opinion of my scans. Despite him saying this is muscle tension from my consultation, he hadn’t looked at my scans at that point. He is liaising with the previous ENT/Throat specialist I saw. I hope he comes back with something but I’m not hopeful.
If no luck with him, then yes, it’s on to the next. I appreciate I probably should be a little more prepared in future, maybe with a file I can take along with some of the papers you’ve linked and my history etc.
The only thing, I will add (who can beat @KoolDude 's research & suggestions for you?!?) is that commonly, our members who have clicking when they swallow do have calcified stylohyoid ligaments & some of them the ligaments were calcified starting at the hyoid bone & growing toward the styloids but styloids were normal length.
We’ve had a few members who had hyoid bone syndrome which is what KoolDude just posted about, where the greater horn(s) of the hyoid are longer or bulkier than normal & cause clicking & pain upon swallowing. I could imagine if only one of the greater horns was elongated or enlarged, it could cause compensatory muscular changes in the neck which, in turn, could result in what you’re seeing in your scan images. I feel like I’m shooting in the dark here but trying to leave no stone unturned.
I conclude that the doctors you’ve seen may be right - your symptoms are being caused by abnormal muscle tension, but where they’re wrong is in not seeking to find the cause & dealing w/ that so the muscle tension can be resolved once & for all.
You are right they know something is wrong but don’t know how to approach them so they dismiss you. You can show them the 10 cases listed below that all were treated through surgery and resolved. Also give them your confirmation that you are willing to take the risk of exploratory surgery to get to the bottom of this. See the yellow high-lighted text on the study below. These were diagnosed on the operating table and treated at the same time. After all I agree with the title of this thread. You need to seek investigatory surgery. If they are not willing to do, don’t waste time with them, move on to the next doctor. It’s your body you know it better than any doctor. I am confident this will be resolved but might take you a little longer to find a good surgeon to do it. Keep the faith and the fight for yourself.
@Isaiah_40_31 thanks but many folks here helped more than I could have in the short period I was here. You and Jules do it every day along with many other folks. I was helped much by this place and I am here to help as many as I can. After all we are not doctors but try to equip patients with the right info and research so they they can have an educated conversation with their doctors and guide their diagnostic process. Knowing the problem is half the battle with rare diseases/syndromes.
When you’re paying privately to see a doctor, I wonder if you could ring their secretary beforehand, explain the situation & that you have a complicated medical history, then send a file for them to look at before you go in for your appt? It doesn’t seem unreasonable, as you’re paying, & if they’re unwilling to do this then you’ll know it’s probably not worth the money to pay for seeing them!
Sorry if you’ve tried this already…
There are several of you (@vdm, @TheDude & some others) who have “gone the extra mile” in presenting appropriate research, links to videos & articles that relate to various issues from which our members are suffering. Some of what you all have posted is over my head, but you have been good at giving layman’s explanations, which I appreciate.
Thank you for the compliment. @Jules & I do our best, but there is much we don’t know & much of what we do know we learned from our experiences w/ ES & posts & research articles on this forum. This is a team effort. We’re all here to help each other win.
Started choking on some milk these evening. To the point where my airway felt as though it was closing up. Could catch my breath. I was on the verge of going to hospital. Yet none of these consultants want to try and help.
Not yet. The most recent consultant I saw has come back and said he still believes this to be muscle tension and has suggested me trying CBT (Cognitive behavioral therapy) as if it’s a case of my over analysing the problem rather than it being a serious physical issue that’s impacting me.
I’m at the point where i’m kind of giving up on life.
I’ve emailed the consultants from Germany that @KoolDude recommended here. But other than that I don’t know anymore.
I’m struggling. I don’t know how I can cope with this anymore. No one seems to want to help. It’s destroying my life.
It’s as though everything you say is used against you by these consultants by whatever means possible so they can suggest it’s either psychological or purely muscle tension.
If you even dare say you are stressed about anything then that will be blamed for your symptoms. They actual lead you into that by repeatedly asking questions about if you find work/life stressful. Then if you demonstrate an issue in the throat to show them it’s real / there is obvious clicking etc, then it’s just said to be muscle tension. What the fk can I do at this point?
I’m swallowing via the tiniest muscle movement at the back of the throat because everything in there is stuck. But because I’m just about managing to get food down, then my swallow is supposedly safe and nothing more is done.
I’m making my swallow safe by forcing food down there. My swallow is completely efficient and strong other than the blockage which is stopping the movement. It’s completely the opposite of me supposedly swallowing incorrectly or having learnt an improper swallow over time or muscle tension. I’m literally swallowing in the only way that works because I’m forced to.
I’m waking up repeatedly all night because of this. My airway is feeling reduced. I’m sometimes choking now. And these people do nothing. Its sick. I cannot go on like this.
I’m so sorry that it’s such a struggle for you to get taken seriously, it’s crazy when something can be seen with the swallow study you did…not sure who you saw, but this ENT I looked at online does at least acknowledge structural abnormalities/ external compression so might be a bit more thorough? Swallowing difficulty - ENT 4 London
Will be praying that you can find someone to help, sending you a hug
Thanks Jules. I’ve not come across him before and if the statements on the website are accurate he sounds more open to explore this kind of thing. I will make contact.
I’m so sorry for all you are going through! I don’t know your situation and I’m not trying to be nosy. I wonder if there would be any way to have a doctor here in the US review your scans. I’m just literally trying to think of any way you could get help. This is such a rare disorder. So far I’ve only found 3-4 doctors in the US that specialize in hyoid bone surgery. There may be more, but I don’t know about them. These specialists seem far and few between.
I’m not trying to be nosy. Just some food for thought…
If you at all have the ability to travel to the USA, I’d consider making an appointment with Dr. Chhetri in California. My guess is their office would do a virtual appointment with you after you forward your scans to them. Then he could let you know what your options are. Just an idea.
