I wonder if anyone can help me with my very confusing symptoms. I had a CT scan with contrast (neck) which showed styloids to be a normal length, under 2cm. I have my left styloid (confirmed by ultrasound) palpable through the tonsil fossa, but this may well be due to stretching of the tonsil fossa tissue. I know it has stretched because it is super thin and the arch at the back of the mouth has partially collapsed. So I started off with definite glossopharyngeal neuralgia symptoms and got relief from 100mg Amytryptiline a day. Then the symptoms started changing to tissue soreness in the mouth, unable to swallow without pain on the left side, tonsil tissue really thin against pointy process. I also now have throat tightness and strangling feeling whenever I bend over, making me feel dizzy and feint and that i cannot breathe properly, pain when taking in air. This alone is giving me panic attacks. I also have pain radiating down my neck, shoulder, arm and breast. I also have a popping at the hyoid where something is getting stuck every time I turn to the right and intense soreness (swollen lymph nodes). My first MRI scan showed multiple lesions on my brain suggestive of vascular difficulties, yet all my blood tests have come back normal.
I have seen London consultant who has agreed to do a styloidectomy and said he could look at the hyoid whilst he is at it and ‘nibble off’ a bit if required. He said the hyoid looked normal on the scan and the ultrasound. I dont however feel that I have managed to get the full extent of my symptoms across with regards to the hyoid and the strangling, so I will book another face to face appointment. I have also seen the cambridge consultant who has an excellent understanding of all things vascular/neurological and who I believe would do a really good CT venogram for me, but if my main problem is the hyoid, he would not operate to sort that out, he would have to refer me to a colleague. He is however interested to see whats going on in terms of my vascular symptoms and vagus irritation (burping, food getting stuck).
My problem is that all the scans and MRI’s are coming back ‘normal’ and yet I am in debilitating pain which gets worse by the day. I don’t think I necessarily have Eagles Syndrome - but I have styloid/hyoid symptoms due to tissue changes on the left side. It seems unless you are in the position that causes the problem (e.g bending over) the scan will continue to look normal, so how do you get around that other than to let a surgeon loose to take a look on the day?!
I feel really stuck between expensive consultants who, quite rightly, dont really know what to do with me. I know I need the styloid taken out, which both consultants say they will take to the skull base, externally, because it will eventually break through and its very uncomfortable to eat. However I dont know what to do about the hyoid / strangling/ vascular symptoms other than to go back and see them one more time to discuss those. I am so desperate for even a mild amount of relief as I have two young children and they need me to be functioning and vaguely happy.
Any advice or thoughts on symptoms would be really welcomed.
From what you have said it really sounds like your symptoms are related to a brain (cerebral) venous drainage insufficiency - signs of which can be seen with a brain MRI if done appropriately (which you referred to having). I am not a doctor but would stick to the one following that path. Bending forward at your waist puts an incredible amount of pressure on your venous return system (and cerebral spinal fluid system) from your stomach/diaphragm. I do not think this position can be used during testing unfortunately.
This may be a bit overkill for you but here is a link that is very complete with explaining this problem, imaging and treatments if you are interested. It does not mention ES specifically but that is just another name for “osseous impingement” - osseous meaning bone, which is referred to. Each specialty talks about the same thing using different terms - very frustrating but once you pick up on the vocabulary it gets easier. (Don’t let the reference to MS scare you, this problem is seen a lot in many people without signs of that at all!!! In no way does it mean you have that or will get it!!)
You are in a tough spot but not without a path and hope. Keep asking a lot of good questions and let these people know you don’t have a money tree growing in your backyard, this may help to streamline your plan of care.
I want to give you another item as food for thought - Has anyone looked to see or mentioned that you have calcification in your stylohyoid ligaments? In the absence of elongated styloids, calcified stylohyoid ligaments can also cause ES symptoms. They attach at the lesser horns of the hyoid bone & run to the tips of the styloid processes. They don’t have to be fully calcified i.e. from hyoid to styloid to cause a problem. When calcification occurs on the s-h ligaments, they “tether” the hyoid bone so it can’t move as it should w/ breathing, swallowing, & talking. Many people on this forum have had issues w/ calcified s-h ligaments. Once they are removed & the hyoid is released, the hyoid is able to move freely again & symptoms disappear.
The burping, strangling, etc., could all be related to vagus nerve impingement/irritation. Glad you’re getting that looked into as well.
Most doctors will let you put yourself in a provocative position for the venogram - as far as you can be supine, like turning your head, tucking your chin. Some will even incline the upper half of the table a bit to help provoke your symptoms during the test as well…would ask about that as well.
Sorry that it’s difficult for you to identify what’s causing each symptom- unfortunately I think members often find that the only way to get that sorted is to have surgery & see what’s resolved. No consolation to you paying out for tests etc though I know! It does sound like the styloid needs removing regardless of whether it’s causing vascular issues because of the way it’s stretching the skin in the tonsil region. BTW- although your styloids haven’t been measured at that long, it’s not normal for them to push through like that so I would imagine that it’s quite angled, which can cause symptoms. So maybe wait & see what’s happening with the venogram results, & consider the surgery regardless of whether the hyoid is causing issues? There’s info in the Newbies Guide about symptoms & what causes them; lots of info about vascular ES so you could see if you have other symptoms.
The shoulder pain can be down to pressure on the accessory nerve by stylouds, & vagus nerve pressure can cause quite a variety of problems & that can be down to styloids too. Sewmomma has posted alot about her clicks- hers was caused by calcified ligaments on the hyoid end, so I would double check after your CT that there’s no calcification of the ligaments.
I’m sorry that we can’t give you a definitive answer, I hope that maybe the venogram shows clearly what’s wrong & Mr Axon or Mr Hughes can help you…thinking of you & a big hug
Hi - the most annoyed I ever got was at a doctor’s office when I told him my hyoid was snagging/clicking on something when I swallowed. He put his hand to his throat and moved his hyoid to the left and right and said “see, mine rubs up against things too when I move it around”. I politely stated, “but mine does it with each and every swallow of saliva, food and water and it didn’t do that the first 42 years of my life own its own EVER”. You can certainly move your hyoid around and it rubs into things and makes grinding noises. Getting stuck/trapped shouldn’t happen though. And it shouldn’t click on it’s own. I lived with that for a little over a year and it drove me absolutely crazy. With my hyoid now un-tethered after 3cm of calcified ligament removal in surgery - it rests at a natural position and isn’t rubbing against anything any more with every single swallow.
Hey there, we have VERY similar symptoms. A lot of your responses are very helpful, and I am also going to explore a few I haven’t heard of yet.
I just want to let you know, I had ES surgery on the right side, and when the doctor went in, he saw that my Hyoid bone had a hook on the end of it. It did not show up on any scans I had had. He clipped it off and now I can look right w/ less dizziness. I felt a lot better for a while, but turning my head has started to caused dizziness again. So, I’m left trying to decide if I want to see if doing the left side will help, and explore to see if the left side is hooked as well?
I have also been diagnosed from another doctor w/ idiopathic intracranial hydrocephalus. He started me on Diamox and it is the first thing that has helped my pain at all. I also have the positional headaches. We’re trying to increase my dosing and see if it continues to help. If it does, we’re going to talk about my options.
I still am confused what pain/pressure is coming from what. Hopefully, i will figure it out w/ my doctor before I decide if I am going to have the exploratory surgery for the Hyoid bone.
Not sure if this helped, or made it more confusing, but maybe it gives you more things to explore. Keep at it. I know it’s hard and frustrating, but don’t stop until you get the answers and relief you need. I’m trying to do the same myself!
So sorry to hear about your return symptoms and the added hydrocephalus - yuck. Great that your doctor picked it up - Diamox can work miracles, hope it is your answer! (unfortunately I am allergic to it). I also hope your two doctors can connect as there can definitely be a relationship between vascular ES, intracranial pressure and positional headaches but the path can be an arduous one. I am fortunate to have one skull base ENT managing all of my intracranial pressure (hypertension), pneumocephalus, CSF leak and vascular ES … as long as everyone can play nicely together it all works out Hang in there!
If you have bilateral ES, I would chalk up at least some of your symptoms (pain/dizziness/head pressure) to the other styloid. In bilateral cases, one side can cause pronounced symptoms while the other is quiet. Once the one side is removed, the other side can cause symptoms that slowly sneak in & because the advent of those symptoms is some time after the first surgery & because they aren’t expected or come on slowly, people tend to dismiss that they are being caused by the remaining styloid process. I think it’s a good idea to at least consider the possibility of the second styloid as the source of your current health situation.
That said, I, too, hope the diamox simply takes your pain & symptoms away & you don’t need to face another surgery.
Good to know others have experienced the same thing,! Yes my hyoid feels like it is hooking something but I don’t know what, and it’s sporadic so it isn’t showing on a scan. I wonder if a vein is getting caught up, causing the dizziness and choking symptoms. I’m definitely going to ask the surgeon to take a look at both bones and see what is catching if possible. I don’t think, apart from examining the hyoid whilst you are under the knife, that there is much that can be done. Great to know there are others on earth with the same symptoms!! Thank you for sharing.
If you did have surgery with Mr Axon, I would guess he perhaps wouldn’t be able to look at the hyoid- as he’s a skull base surgeon he does surgery quite differently to how some of the US members have had surgery. He operates from behind the ear, & a little way under the jaw line, not across the throat like other surgeons do. So I would guess that the hyoid wouldn’t be visible from there…obvs check with him yourself though, maybe sometimes he operates differently, but I know he’s very careful not to cut through structures which helps with healing, he told me he’d changed his technique to help with that. (But my op was 4 years ago). Just something to bear in mind & get checked.
Hi! Something similar happened to me on regards to the tests. Nothing revealed ES. All normal. However, finally a ENT sent me for a very unusual scan, laying face down with the chin up. There they were. As for the calcifications other Eagle mentioned here, she is totally right. I had my two styloids removed. Now they are calcifying and enlarging again. I get dizzy all the time and have headaches. I cannot garden because I swell; cannot be under the sun, and get even worse after doing something that makes me sweat. The pain is fierce, but familiar. Styloids are not supposed to grow back. I guess I was not weird enough the first time around.
Do you know if your styloids were cut back to the skull base or if they were only shortened w/ some styloid left behind? We seem to be seeing more cases of regrowth when the styloids are only shortened not fully removed (though there have been a few cases of regrowth even after total removal).
I’m glad you’ve gotten a diagnosis & am so sorry you’re facing another round of ES surgeries. Doesn’t seem right that these little buggers have to make an encore appearance in some people!
Make sure to talk to the surgeon you choose about removing them at the skull base & not just shortening them (in case that’s what happened last time).
You know we’re here for you if you need us as you prepare for round 2 (or 3 & 4 if you had bilateral surgery last time).
Your ES problem was likely developing for quite awhile before you had symptoms but finally “reached critical mass” just after you turned 40. The info you posted about ES being more prevalent in women who are approaching menopause is quite interesting. I’m wondering if anyone has done research on that theory. I’ll see what Google has to say.