Im new to the group after stumbling across it trying to find answers for my ongoing pain and symptoms. Just a wee bit of background history. Im a 34 year old female. I already have a diagnosis of audhd, hypermobile ehler danlos syndrome, pots, raynaud’s, and anterial tmj displacement with reduction.
Ive had clicky jaw for most of my life. I was never painful until around about 2 years ago. 18 months ago I was referred to oral surgery for investigation and this is where the anterial displacement was discovered. A year ago roughly I woke up one morning with what looked like right-sided stroke symptoms, the right side of my face was drooping. Attended a&e but because I could lift my arm above my head I was sent away. I was in horrific pain from the top of my scalp down to the back of my neck, down my eyebrow, tmj, side of my jaw, neck , clavical, shoulder blade/tip , down to above my nipple and down to my ring and pinky fingers. I also had a clicking coming from my throat in time to my pulse. I had pins and needles , globus sensation and literally felt like my blood was on fire. I was taking lisdexamfetamine at the time for audhd. I stopped this abruptly in September after reading it could be them causing it. The intense pain stopped , but the nagging ache , globus sensation and clicking/popping in my throat hasn’t left.
I managed to get a copy of my medical files after a 6 month wait and ive convered my CT with contrast to 3d ( unfortunately I cant figure out how to show if I have vein/other compression) but from what I can see i think I have es , hbs and possible compression.
Ive had these blamed on my audhd , anxiety , being a parent , being a woman…the list goes on. I can physically feel something is wrong with my throat. Im seeing rheumatology on Wednesday for suspected systemic sclerosis, I have oral surgery again on the 6th of next month and im awaiting an app for ENT. Any guidance, support or opinions welcome so I can hopefully understand what’s wrong with me and get the help I need to correct this. Sensory wise , I hate my body and it no longer feels like mines.
I’m not able to label your imaging, so sorry about that! But looking at them, your styloids do seem a bit elongated, & then you have separate sections of calcified stylo-hyoid ligaments where you’ve put the measurements, both of which can cause symptoms. Your hyoid bone is unlike any I’ve seen here, as in usually the greater horns are either straight or curved upwards , but yours point downwards! They look quite thick too, so could well be causing symptoms! Your thyroid cartilage also looks fairly calcified- we’re seeing that in imaging a bit more now, and it seems that this can also cause symptoms…
I’m sorry that you have so much going on already & that you’re not being taken seriously; unfortunately on the NHS this isn’t going to be easy to fix as far as we know. There’s only one doctor that we know of who has done ES surgery recently (there may be other doctors that we don’t know about of course), Mr. Thomas Milner, Queen Elizabeth Hospital, Glasgow, he’s done robotic surgery for one of our members. And we don’t know about any who might do a hyoid bone resection, but when you have your ENT appointment, they might know. I would certainly ask about these issues on your imaging, and we suggest that you could look at some research articles about ES which match your symptoms, & HBS as well to show doctors - not all doctors are gracious enough to listen though; have you got someone who can come with you for support?
You mention more oral surgery- this can flare up ES symptoms even worse, I don’t want to worry you…
Do you have any of the images with contrast to upload?
I really appreciate your reply. What you’ve said makes total sense given the symptoms im experiencing. Ive always felt that my throat was tighter than it should be. I looked into eagle last year and felt my symptoms fit. The only trauma ive had in my life was falling 60ft off a tree swing when I was 16. From what I can remember , I wasn’t even xrayed at the hospital at the time.
Does calcification of the thyroid have a name?
The 3d images are from a ct with contrast of the neck , abdo and pelvis. I managed to figure out the settings to get the bone like this but I cant for the life of me figure out how to show if theres compression?
@Princessxharris - I’ve annotated several of your images & will comment on what I see below each picture, but first, this is very concerning -
Has this ever happened again? I’m asking because that sort of symptom can point to irritation or compression of the internal/external carotid artery either by your styloid(s), calcified stylohyoid ligament(s) or the greater horn(s) of your hyoid bone. Since your hyoid bone is pretty unusual as @Jules commented, it could be involved in that experience. Another option is the sections of stylohyoid ligament calcification are also contributors to carotid irritation.
In this image, you can see there’s a decent amount of space between the transverse process of C1 & your styloid process which bodes well for no IJV compression with your head in that position, however, with neck flexion, it’s possible the styloid could squash your IJV against C1.
In this image, the pink line shows you’ve completely lost the lordotic curve in your cervical spine. That brings the styloid into closer contact w/ local nerves & blood vessels. The lordotic curve can be restored w/ time & patience by doing gentle PT exercises. This excellent discussion addresses cervical lordotic curve - List of my favourite resources on YouTube to learn anatomy
Another thing that stands out is that the right greater horn of your hyoid is actually fused to the calcification in your thyroid cartilage. This would serve to tether your hyoid bone on the right side which would be a contributor to the clicking in your throat & likely some of your other neck & throat symptoms.
This image shows the right greater horn/thyroid cartilage fusion from the front & also shows that same problem is not occurring on the left side.
Because we’re not doctors, what we note in imaging can only be used for discussion when you see your medical specialist. We don’t consider it diagnostic in any way.
The imaging you’ve posted aren’t with contrast so don’t show any blood vessels?
The thyroid cartilage does calcify normally with age, so this doesn’t have a name, but we see sometimes some members’ is excessively so. I would say, in a non-professional opinion, that as yours is touching the hyoid or possibly fused, that this is abnormal…
Today’s been an especially symptomatic day and thats why ive taken a bit of time to reply. I managed to contact my physio this morning and explained everything to her. She looked at the scans I captured myself and said she thinks I have tos ( which is something she was already testing me for). I contacted the gp like she asked. Gps spoke to radiology and radiology has confirmed what you guys have suggested. Im now waiting to find out if im going for an urgent ent app or if I need further imaging first.
Today I feel like the right side of my throat is completely compressed. I have pain along my clavical and shoulder blade to the tip of the shoulder , under the arm and pins and needles down my arm into my ring and pinky fingers. I also have extreme dizziness.
@Jules I see oral surgery because I have anterial displacement of my right tmj. I also have major issues with all parts of my teeth with one infection on my left up into my sinus cavity. I had a problem with my teeth when I was pregnant with my daughter back in 2010 and they’ve just been disintegrating since. Im supposed to have further root canal on friday but I will cancel this for now. This is the ct with contrast of my neck abdo and pelvis. Its maybe a setting ive pressed as I cant get the soft tissue to show up either. Ive tried to follow chat gpts tutorial on how to change it to see soft tissue but it didnt work very well. If you have any suggestions of how I can look at soft tissue , id really appreciate the help.
@Isaiah_40_31 ive always had a clicky jaw especially on the right but it didnt become painful until around 2 years ago. It was last year when I first saw oral surgery 2 weeks after the blow out of what looked like stroke symptoms that started all of this. I had a droopy eye and a droopy mouth both right sided. When I smiled my right side hardly lifted. I did attend a&e but they wouldn’t even look at me because I can lift my arm and sent me home. While for the most part my smile has resolved , the problem with my eye hasn’t. I still have a slight droop, what feels like brain freeze in my eyebrow and my vision switches between blurry and black speckled dots , almost as if someone’s caught me with a flash, all right sided. Ive had my eyes checked twice and they seem to be healthy so they aren’t the problem.
Im hoping ent won’t take too long with further actions cause I cant take much more of the dizziness or choking feeling. I appreciate you both so much for helping me figure this all out.
@Princessxharris - Another thought on your stroke-like symptoms is that you may have had Bell’s Palsy. It affects the facial nerve & causes stroke-like symptoms but only in the face as you noted. It needs to be treated w/ a steroid & an anti-viral medication ASAP after symptoms start to get the best recovery. You did the right thing heading to A & E. It’s just wrong that your symptoms went unrecognized & you were dismissed by the doctor/other medical help there.
I’m sorry about how your pregnancies affected your teeth. The trigeminal nerve is one of the nerve frequently irritated by ES. It causes pain in the teeth, ears, nose, sinuses & sometimes even causes migraines. I’m wondering if it’s contributing to the tooth troubles you’re continuing to have?
Irritation of the spinal accessory nerve is most likely the shoulder & arm symptoms you’re having. It’s another of the cranial nerves that often gets irritated by elongated styloids. You can google images of the locations of the nerves I’ve mentioned as being able to visualize their locations & courses in the body helps explain the symptoms they can cause.
You asked this in an early post. There is a syndrome called Clicking Larynx Syndrome which can be caused by excess thyroid calcification. Here are links w/ more information about it.
I had a severe problem w/ TMJ issues/clicking jaw, jaw pain, ear pain, etc., which went away after my styloidectomies. My jaw joints are in pretty bad shape but I no longer have pain. Not sure how the styloids could have impacted my jaw joints to that degree, but we have repeatedly noted on this forum how interconnected our bodies are internally.
Unfortunately, neither @Jules nor I are very techy. The best I can offer is for you to try using radiantviewer.com if you have a PC as our members who’ve used that 3D conversion software have said the instructions are very clear for producing images that contain the structures you want to see. I haven’t tried it as I have a Mac.
There is a cross-over with symptoms between ES & TOS so not always possible to say which is which , & you might not know until you perhaps have surgery… The numbness etc in your arm could be TOS, but some members have also had that with ES if the spinal accessory nerve is affected. As @Isaiah_40_31 said it might be you’ve had Bell’s palsy (that’s on the rise, & has been noticed as being caused by some vaccinations, don’t know if yours was around having any jabs?), or it could be the facial nerve being affected by ES; we’ve had quite a few members with droopy mouths or eyelids from this & it does happen at times after surgery if the facial nerve has been irritated . The pain you mention in your eyebrow & tooth pain could be from the Trigeminal nerve as @Isaiah_40_31 says- I’m having something similar over my eyebrow, stinging/ itchy/sore/burning… the pain I had with the trigeminal nerve is better than before surgery but I have some flare-ups occasionally.
I’m glad that your physio is helpful, & good your GP has been onto radiology as well; that’s brilliant and hope they can get you referred without too much of a wait! Hope that the choking feeling settles down, that sounds awful
