I’d ask about the angle & width of styloids from the CT pics, it’s not always the length of them which can cause problems. And whether there’s any compression of the blood vessels, hopefully the contrast CT will show that .
Thank you for sharing. Yes I have realised that I have styloid soreness as well as hyoid. I put my finger down my throat and located the pain. My scan has shown no abnormalities so I have no idea where to turn. Feels like hyoid is digging into my throat, as well as nearby structures.
I really hope your surgery makes you feel much better, especially after living with pain for three years.
Thank you that is really helpful. I think I definitely have styloid/hyoid problems, but not down to calcification or overgrowth, down to tissue changes in the tonsil area, seems to have set everything around it into chaos. I feel like my hyoid or some bone in the neck is pressing on carotid as well as I get dizzy and feint/nausea every time I bend over. I also have stupid burps, sometimes lots, sometimes none, depending on whats going on in my neck at the time. The pressing on the artery is actually really painful and I choke. One consultant I have seen understands all of this really well and is going to get me a detailed CT venogram scan, however he does not operate on the hyoid which is really really frustrating as I would trust him with my life he is that knowledgeable. I learn new things every day from this forum and it’s often hard to get all your symptoms across to consultants, I tend to get brain fog really easily. I have pain at the styloid and the very tip of the hyoid. I think the connection between the two bones has weakened. I am so glad you messaged me about this as it will help with my next consultation prior to surgery. I hope your surgery goes well, and well done for surviving 3 years with this pain. I have had it bad for 4 months and im totally done with it!
Julia I’m so sorry you’re suffering. I so get it. And you’re the only other person I found on here that has this weird burping thing going on. What’s weird is when I’m laying down and I get up I always burp, and when I have really bad neck pain that’s when the burps are bad too. Very strange. I also get dizzy, if I get emotional or try to exercise it gets worse. I think that’s from the hyoid pressing on the Carotid and jugular, maybe that’s what you’re experiencing as well. This forum has also been such a great help to me, sometimes I get on here just so I don’t feel crazy and alone. I hope you get an answer soon! Just knowing what’s wrong with you puts your mind at ease, and then finding the right doctor. I’m glad you have one that you trust! That’s so important. Just hang in there for a little longer, that’s what I tell myself.
Yes absolutely the same symptoms and you getting in touch with me has really helped inform me to get both consultants to consider the hyoid as well. I guess the problem is, it doesnt show up on a scan so they can only palpate it and take your word for it that you’re having those problems…HORRIBLE. Let me know how you get on please. I hope it resolves for you. x
The stress & exercise were biggies for me too; I had bilateral jugular compression which was causing intracranial hypertension, had some scary vascular symptoms…much better after surgery both sides, still get a little head pressure with stress now, the veins don’t always spring back fully, but sooo much better & I have my life back! Hope that you get some relief soon!
Hi Jules, I don’t know how you did it with both jugulars compressed. I think what is happening with me is the styloid is the right length but it’s a little thick and angled, and was hiding under a large piece of tonsil scar tissue which I have read can encourage growth of the styloid. The scar tissue broke down and the whole area stretched, allowing freedom of movement to the styloid and hyoid. I’m really hoping if it gets taken out at the skull base and the hyoid is nibbled, symptoms will reduce. I’m only bothered about the vascular stuff, I can cope with neuralgia pills but I don’t want to feel like I’m dying several times a day! I’m hoping for surgery very soon x
Just reading about your B IJ compression and resulting intracranial hypertension (IIH) - so so sorry and I can relate! Wondering if your resulting IIH caused a CSF skull base leak for you or were you able to evade that? It sounds like the styloidectomy relsoved your issues, did you have any type of venoplasy to the IJ’s as well? Happy Saturday!
No, I luckily didn’t have a CSF leak! That must be grim for you… I’ve not had stenting done, it was mentioned but my doctor said it can cause pain & they can’r be removed once in- my vascular symptoms were so much better that I didn’t want to risk getting pain back!
That is so great your IJ’s bounced back enough, don’t blame you for not venturing further. So I take it the IIH resolved after the ES surgery? Do you remember how long that took?
The really scary symptoms (I had this horible feeling that my brain was being rolled up & squashed, weird but I don’t know how else to describe it! I felt like I was going to die!) went I think within a week- but my surgeon uses a drain after surgery so I didn’t have trouble with swelling, I would guess that it does make a difference. The other symptoms eased off gradually, but any stress, exercise, heat flying definitely set most symptoms off again. I would guess too that it will depend on how bad each side was- my left was alot worse, so made the biggest difference having that out. The right not as bad, but obvs still causing problems, so that was taken out a year later. I do notice a few symptoms still under stress & flying etc., but easily bearable!
How close are you to getting surgery?
Stress…wouldn’t it be nice to find a way to take that away???
My surgical date is August 19th. Trying to focus on each moment as they come and not get ahead of myself…don’t want to miss the beauty and surprises staring me in the face
Not long now! To avoid stress would make life so much easier!
Stress seems to be a theme in many threads. Not knowing what is causing the pain, the worry of surgery, the post op issues of surgery, healing and on top of all that some of the nerves disturbed during surgery can cause anxiety - it is all too much at times.
Justbreathe - I can’t give any better advise than that. Just breathe and enjoy life’s small moments. (wish I could heed my own advise)
Has anyone had their esophagus/breathing compromised by any part of the stylohyoid chain? My family now telling me I am fighting for air at night making wheezing noises.
Yes I definitely have this too! If left unattended developements can include sleep apnea, loss of tongue suction that results in mouth opening and your tongue slides backwards into your throat, head position that rests slightly up and back which then opens your mouth further and partially blocks your airway as your head sinks down onto your neck. The part of your nervous system that works without you thinking about it (the Autonomic Nervous System) will be triggered as your oxygen saturation decreases and wakes you up just enough to get you breathing again. Sounds like this is what might be happening here. It is usually scarier for those hearing you. Are you sleeping elevated, like 30-40 degrees? This can be helpful to keep your head and neck in a better place until you get these little buggers removed!
Wow. This condition really is set to finish people off isn’t it!
Thank you for sharing your experience, I am increasingly anxious and this is not helping! I woke myself up with it last night. I am awake a lot in the night with mouth wide open and dry from the amitriptyline. I guess that’s what is happening. Last night when I went to bed the styloid was pressing into my pharynx. As it grinds away at the tissue in my throat it seems to bring ever increasing symptoms! I hate my young children seeing me like this. Roll on surgery and good luck for yours x
The amitriptyline is also a mild sedative which may be a factor in the sleep disturbance, did you or your family notice this in relation to starting this medication? It can also be a factor in your mood, designed to help but in some people can worsen anxiety/depression. If so please talk to the doctor who prescribed it for you, there are so many options on the market, just have to find what works for you.
Do you have a surgical date yet? Hold on, you will make it through this!!!
Hello yes Amitriptyline makes me drowsy and I also have been given diazepam for panic attacks and codeine for the pain. I have panic attacks when I get the strangling / tight throat pains and struggle to breathe. I am a walking pharmacy! It has taken about 8 weeks to get into a good place with Amitriptyline, It has helped (finally) enormously with glossopharyngeal neuralgia and headaches. I am on 100mg a night. Thankfully I do seem to wake up during the night to catch my breath. I was wondering why I was waking at strange times of night, now I realise it’s my body trying to breathe! I am now just left with tissue pain and inflammation where styloid/hyoid are grinding into my throat and what I assume is vascular compression pain. Every single day the symptoms come and go, and are different at any time of day depending on what I am doing. All i know is, they are getting worse and so I am close to paying for surgery to try and reclaim my life! I know you aren’t far away either. I pray that it helps heal these rotten symptoms for you!
Like JustBreathe says, if you don’t already try sleeping propped up- it will help with vascular issues too.I do feel for you, it sounds grim…I ended up sleeping in a reclining chair before my surgery, it helped with the head pressure & pain. I was pleased that amitriptyline helped me sleep more though- it was too painful to sleep much before.
Hope you get some treatment soon…