So I have a follow appointment booked for a couple of weeks time, let’s see what happens. I’ve also requested copies of my scan and I will post them here when I receive them.
One thing I’ve noticed which some of you may be able to provide some knowledge on is that if I move my hyiod bone from side to side with my hand, it each side left and right, it seems to be scrapping/clicking past something that feels as though it is above/behind the hyoid bone. As if something is sticking out from behind the hyoid bone. What could this be?
This was my entire journey with ES. My hyoid would get “snagged” each time I swallowed and make two “clicks” - one when it went up and one when it went back down with each swallow. I was told by one doctor that that was “normal” and he grabbed his throat and showed me it can rub on things when moved by your hand. Perhaps your spine in the back of your neck, perhaps surrounding structure - no one can know without being inside our throat and looking (how I wish a tiny little man with a tiny little camera could get in there and see mine). I am still dealing with a very, very, very faint click when I swallow but I think it is everything settling 4 months after surgery. I’m trying to ignore it and I try not to mess with it and move the hyoid around with my hands.
It is normal for it to rub across things when you move it with your hands. The doctor that showed me his own does that was correct on that. But he missed the fact that it shouldn’t get “hung up” on things when you swallow - that’s not good! That was my very first symptom last year that led me to get the CT scan. Both my calcified ligaments are gone now and I’m waiting for it to all settle and stretch out during this long healing process.
Sewmomma had calcified ligaments from the hyoid bone upwards, which seems to be more unusual, but it could be you have calcified ligaments & they’re catching?
Hi guys, I’ve just received a copy of my CT scan. Here is the statement from the radiologist that came with it. I suppose that doesn’t really explain much? I will get the images of the scan uploaded next M_CT_20191021_201519_1|353x500
Here is a 3d image of the scan from one angle. You can barely even see my styloid processes. So they either didn’t scan high enough or maybe they aren’t long enough to be classed as eagle syndrome.
I suspected it wouldn’t be eagle syndrome anyway. Is there anything I can take from that image or the info from the radiologist notes? I just want some answers. I have the other 2d images from the scan as well if they are even worth looking at? Utterly fed up with it all now.
It seems the radiologist didn’t even look at your styloids because, if he had, he would have commented on their length even if they weren’t elongated. It seems he checked out your thyroid & hyoid. The styloids come out of your skull base (mastoid process of the temporal bone). He should have been looking there!
I agree w/ vdm that the top picture you posted is missing the part of the skull that would show the styloid process. In the bottom picture, your styloid looks very thick at the top & very pointed toward the hyoid end (if I’m looking at the right thing). These features alone, in the absence of length, could cause problems. I’m also concerned about the “unfused ossification centres of the thyroid lamina”. Ossification where it doesn’t belong is subject to cause problems because it “tethers” the tissues that have ossified & keeps them from moving as they should, which in turn causes stress on other tissues, & thus pain can result.
I would ask for a re-read of the scan with a specific look at your styloid processes & stylohyoid ligaments. In the first pic you posted, it does look like you could have a little ligament calcification, but I can’t tell if it’s on the right or left side or if it’s just an artifact on the scan. I would also question the issue of the “unfused ossification” on the hyoid lamina.
On the CT there-'s very little you can see, not very helpful! But on the xray pic you can see something wide & long pointing straight down beside the jaw, where we would normally expect to see the styloid process? What is that? Usually I’d think that was a very long straight styloid, but I don’t know if it is a SP why it’s not seen on the CT image, so I’m confused, but obviously we’re not doctors…I do agree that it needs re-reading specifically to look at the styloids, if you can raise that with the consultant?
Very frustrating for you, thinking of you…
Went back to the consultant today. Everything on the scan is normal. Which is what I’d expected them to say anyway. Styloids are normal etc. Doesn’t know what’s causing my throat issues, thinks it may be a muscular issue.
Said they can refer me for a video fluoroscopy and to speech therapy but I already went down that road a couple of years ago, again resulting in no answers
I’m done with it all, I give up. Don’t really see the point in living life anymore. Thank you for all of your help.
I’m so sorry that you’ve not got any answers. I can understand you must be weary of fighting, but try to keep going & don’t give up. There are some other conditions members have been diagnosed with instead of ES- in the Newbies Guide section there’s info, I think it’s called ‘If not ES then what else’, maybe that might help…
As BG says, have you friends or family who yiu can talk to? There are contact details on the homescreen if you need someone anonymous to talk to if you’re feeling that there’s no point…please don’t sit on your own feelibg like this. And we’re here for you whatever your diagnosis if we can help at all. Thinking of you- hugs & prayers for you.
Callmestar1 ~ Can you try to get a second opinion? Another doctor may see something that was missed by the first one. I also agree w/ Jules & BrooklynGirl that giving up is not the answer. Take some time to regroup, research the info in the link below (which Jules alluded to) & get back on the path of discovery. You can do this!! Please lean on your family & friends. They are there for you and so are we!
Hi Callmestar1,
I am sorry things are so rough right now. By joining this group you have found a large number of people who have complete empathy for delays and frustrations in getting a correct diagnosis and treatment. May the many positive outcomes in this group stand as a reminder of how worthwhile it is to continue to advocate for yourself, with multiple doctors if necessary. After you reset from this disappointing week, take a look at the excellent resources on this site. Be well and stay curious. Keep us posted about how you are doing.
Guys I’ve looked at all of the possible other options to what it could be that are listed on this site. My symptoms don’t match any of them. I’ve had this for years and have found nothing that matches. I mean I have the obvious throat clicking and swallowing issues but theres no specific diagnosis that matches my symptoms. I’ve seen about 5 ENTs at this point. Had an Mri, vidoefluroscopy, no the CT Scan and nobody can see what’s causing my symptoms.
I want somebody to cut me open and do some sort of investigatory surgery but that seems unlikely. Even a Steroid injection in the throat, just for something to try but ENT say they wouldn’t do as they don’t know where to inject as they can’t see what’s causing the symptoms.
I will try and regroup but options are running out. I really don’t I have eagles, just some vague condition that nobody can spot on a scan unfortunately.
Have you tried seeing Mr. Axon, the most experienced ES doctor in the UK? He may have some observation or opinion that differs from what you’ve heard elsewhere. He’s doesn’t do miracles, but his greater experience may help turn up something for you.
Just a thought. Please stick with us & let us help you along this torturous path. We love you & want to give guidance & support where we can. Sending up a prayer for you now!
