Hi thank you for welcoming me to the amazing site 
its nice to know your not alone 
so my story is a long one and possibly self inflicted aswell, it all started in January this year with something not quite right at the top of my back/neck very anoying sort of pain so unfortunately i got a tennis ball and rubbed it up and down my upper back and neck to try and receive some of the tension in my back the next day i was in agony with the pain, i went to the doctors and they said it was muscle related and prescribed me naproxen a couple of weeks went by and it started with nerve pain, not being able to lay down at night so i booked myself into see a chiropractor which looking back now was the wrong thing i could if done because he said he altered my c3 in which he karate chopped my neck and twisted my head at the same time by the time to got home i started coughing uncontrollably that dyed down eventually but after working 3 long day i was in agony again with nerve pain so went to the doctors again and he prescribed me amitriptyline which after 3 dsys helped then i went away for a wk by the end of the week i was wraped in pain on the second night i got back so went to a and e they just gave me strong pain killers which helped i booked in for a mri on my neck and the specialist said that i had a hurniated disc which was touching a nerve so went to PT and it was getting better less clicking in my ears but then one day as i was doing the neck exercises i just happened to twist my head the wrong way then heard a big bang in my ear went very hot and sweaty and all the ckicking/ popping came back, a week went by and then one day i experienced what i woukd call the worse day of my life, shaking uncontrollably all over called for a ambulance they came and took me to a and e again they gave me more medication so by this time i was high as i kite on naproxen, codeine, amitriptyline, pregabapen, paracetamol, went back to the specialist and asked for another mri on my neck the results were it had got better and pushed back a little bit so couldnāt to causing any of the pain but he oftered me a steroid injection in my neck which i went for 4 days later i was back to a and e as the pain was still so bad but after a couple of weeks went by and i tried to wean myself all the medication i was on i started to feel ok ish but the muscles in my neck where just so tight so went back to the doctors and he prescribed me some muscle relaxants diazepam and that seemed to help alot but i still could feel something in my throat all the time i was swollowing, so went for a massage and she could feel it too we had not idea of what it could be but i felt fine other than that something in my throat finished off the diazepam and after a few weeks went by neck muscles started going all tense again and couldnt hardly move my neck so went back to the doctors he prescribed me some more muscle relaxants went on holiday and half way through started feeling horrible again like my neck wouldnt move and was feeling really bad the nerve pain had come back again so im back to square 1 almost 11 months down the line my symptoms are
Headaches
Ringing in ears
Canāt turn head left and right
Lump in throat when swollowing
Side of tounge is numb
Strange coating on my tongue
Hurts at the back of my throat
Struggle to swollow
Clicking/ popping/cracking in ears only when I swollow Everytime)
Sometimes other ear will pop
Cracking in my back neck when I stretch
Blur vision
Heart palpitations
Unbearable nerve pain
Dizzy
Floating feeling
Pain in jaw/face/ neck/shoulders
Ear pain in both ears
Sleepless nights
Yawning/talking/eating makes me feel worse
Rib pain
Brain fog
When i swollow my oesophagus sticks out
Very Tight under chin and side of neck
Feels like someone is strangling me
Breathing strange
Heavy head /fighting to keep it up right
Gets worse as the day goes on
Claggyspit (some times)
I havenāt been able to do all the things im used to doing because just walking up the stairs puffs me out, Iv just turned 52 and before this i was very fit climbed mountains, hiked 8 miles, worked full time now i feel like staying in bed and sleeping the pain is horrendous and sometimes just feel like ending it putting two and two together i feel like i might of had eagle syndrome before this all haappened but not known it and iv just opened a can of worms, the chiropractor possibly could of helped it aswell by maybe braking something off and getting logged in my throat and i think the steroid injection has calcified my styloid bone, im sorry its a super long story and i feel half to blame which depresses me even more 
Hi! Please donāt blame yourself; you werenāt to know what was wrong, and going to a chiropractor probably seemed an obvious thing to try! It sounds as if he was partly to blame, not youā¦it is possible for a styloid process to snap, so this potentially couldāve happened when he twisted your neck. I believe that in the US chiropractors are trained doctors but here in the UK they arenāt. The steroid injection wonāt have calcified anything, usually steroid injections help with inflammation, the calcification is often a response to injury/ trauma and inflammation& builds up over time.
Certainly if you read the post about common symptoms & possible explanations:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
then youāll see that you do have quite a few ātypicalā ES symptoms- the trouble swallowing & feeling of a lump in your throat are the most well known ES symptoms, along with pain & trouble turning your head, and nerve pain, plus pain eating and talking. The glossopharyngeal nerve can be affected which can cause numb tongue, other members have noticed either hyper salivation or thick saliva or a dry mouth. The strangled feeling is often from calcified stylo-hyoid ligaments compressing nerves. Dizziness, floating feeling, brain fog and headaches can be vascular symptoms, and the heavy head feeling could possibly be instability of the neck vertebra.
So I would suggest trying to get a head and neck CT, if possible with contrast as this would show compression of any blood vessels hopefully. And try to get a referral to one of the doctors on our list if you havenāt already ; Mr Hughes in London or Mr Axon in Cambridge if you can, otherwise I donāt know if any of the Otolaryngologists at the Sir John Radcliff hospital would be familiar with ES?
If youāre not on the nerve pain medication now, I would try going back on this, it can take a while to build up in your system so worth persevering with. Ice &/or heat can help, and sleeping propped up might help too.
I hope that youāre able to get diagnosed & some help! 
Hi jules thanks for the reply, i saw a ENT consultant on monday and he is investigating ES, because at that time i could feel something that felt like scratching the back of my oesophagus and i think thats come from a broken off calcified styloid ligament, he put a mini camera up my nose which went only down to my voice box but said he couldnt see anything, i know this sounds a bit far fetched but i remember back in july after getting out of the shower id washed my hair bent down to put the towel on my head and heard 2 very loud cracking sounds in the back of my head and ever since then i can feel pressure in my throat and sometimes in my head, when i think back it all fits into place but ever since the chiropractor i havent been right but the ENT has ordered me a CT scan with contrast and i have got medical insurance so im going to wait for the results then hopefully the ENT specialist can refer me to mr Hughes in london. Im so glad i found this ES forum it really does feel your not alone and thinking your going crazy. Iv put myself back onto amitriptyline so im coping with the nerve pain. Iv had to go off sick again because i just cant seem to turn my head left and right and when i do the pain gets worse so currently at home trying to do little jobs then rest for a while because this really does make you feel like your 90 years old inside 
Hopefully Iāll get a diagnosis soon 
ill keep you updated.
Hi everyone, i know this question is a bit of a odd/crazy question it might stop me worrying so much but could the elonglated calcified styloild get lodged in your neck and throat? because i really feel that they have or is it my imagination playing tricks on meš«¤
Hey Adele,
My name is Merl, Iām a member of the Modsupport Team here on Benās Friends.
Firstly, I must agree with everything Jules has stated, especially the:
Looking for answers is naturally what we do. I do not have ES, but rather a nasty growing in my head which has given me some VERY odd symptoms. I had all sorts of tests, all sorts of drās making their diagnosis (or just having a guess at a diagnosis). It wasnāt until 10yrs later that I finally got a firm diagnosis. In that 10yrs I had all sorts of what I call pseudo diagnosis with answers like āWell it could be āXā or it could be āYāā¦ā but nothing confirmed. I even got a āohh, we think it might be psychosomaticā¦ā like it was all in my head, little did I know just how real that was to be.
When the medicos canāt readily identify a cause, the easiest answer is often to put it back on the patient, make the patient doubt themselves rather than doubt the medicos, it can be extremely frustrating and demoralising. Now, I have to say that this happens rather more frequently for those of us with a rare condition. I can only reinforce what Jules has stated and say, do not be doubting yourself. If this is what you are dealing with, then why? if they say itās not ES, then what is it? And you have EVERY right to be asking these questions. I was told I was as crazy as a box of frogs to be having the pains/sensations I was having, āItās all in your headā¦ā they couldnāt find anything wrongā¦ ā¦until they did find something. Donāt let them discount your concerns. As Iāve mentioned to others, āThis is about us and our health, not them and their egosā¦ā
Merl from the Modsupport Team
Hi merl, the GPs over here (uk) have made me feel like that the GP that i went to see last week hadnt even heard of it and i was the one explaining what the condition was to him but my ENT has so hopefully the scan will show the calcified elongated styloids on both sides but only 1 side giving symptoms, iv been reading through all of the different sections of this forum and i am so grateful because it has really made me understand that im not crazy and its actually real whats going on with me hence being a well fit person until a year ago then all of a sudden thisā¦ i really do appreciate all the suport on here 
speak soon
The styloids can irritate the nerves in the throat, which gives the sensation of something poking, rather than them actually poking something, they canāt get into your throat so try not to worry about thatā¦But obviously if the styloids had been fractured then itās not ideal to have a piece of bone in an area so packed full of nerves. But hopefully youāll be able to get a referral to Mr Axon or Mr Hughes fairly quickly as you have insurance, great that you wonāt have to wait for the NHS!
Thank you jules for the reassurance
Hey Adele,
GPās can be great for your broad everyday medical needs, āHere, take these tablets and come see me in a week or twoā¦ā but for things outside of the āeverydayā their knowledge can be lacking. Thatās why we have specialists. But medicos DO NOT like being told their knowledge is not as complete as they may profess, in fact, they can get rather anti when we question their knowledge (I know this because Iāve questioned them myself and their reactions were nasty). āIām the Dr. Iāve completed years of study and I know. You? Youāre just the patient, you wouldnāt knowā¦ā I wanted to rip his damn head off. Arrogant sod. I have learnt itās often safer to simply go āYes Sir. No Sir. Three bags full SIR. Whatever you say SIRā¦ā take their information and then investigate my options for myself.
I cannot express to you the relief I got from Benās Friends, finding others in a similar position to me. Like āPHEW, so itās not just meā¦ā Prior the medicos made out that I was the only one, like I was imagining it all. But itās all too real to be imaginary. You know your body better than anybody. Donāt let them make you doubt yourself.
Merl from the Modsupport Team
Iām in the UK as well and have similar symptoms, although thankfully not as painful as yours by the sounds of it. I also roll a tennis ball on the back of my shoulders, not usually my neck because itās too sensitive. I was also caught blaming myself because I had lower back issues which prevented me from standing or sitting for over 2 months, so I ended up kind of lying down with just my head up, my neck flexed forward all the time. Then I felt a pop in my throat area on the right and all these symptoms started. Like you, I went to the chiropractor and after that I had trembling all over, I couldnāt sit for longer than a minute because I felt really giddy inside and all this trembling.
Initially I thought I had CCI or AAI, or maybe a stroke (specifically Wallenberg syndrome because I had a certain type of double vision), Parkinsonās or MS, itās was just awful how it affected my entire body. Iāve gone for lots of scans and tests and Iāve ended up here, Iāve got slightly long styloids and a bit of calcification of both ligaments. Iām waiting for a CT with contrast.
My advice is donāt blame yourself. Lots of people put their neck into all sorts of positions and it is actually supposed to be really strong. Mine feels weak and especially if I turn to the left, I canāt swallow at all if I turn to the left and then back again and I end up having to adjust my neck or throat all the time. Itās been 3 years like this for me now.
Donāt let your GP fob you off. Iāve been gaslit so much and people just saying anxiety/stress/somtisation and all just from looking at me. Iāve had to pay for all of my scans myself because the NHS just doesnāt believe me. Stay strong.
Hi skatkat, your story is very similar to mine so sorry you are going through this aswell its horrible, i feel your pain and youāve been going through this for 3 years what i feel with mine in i actually think the styloild is going inwards and has gone through to my oesophagus ( i know this sounds extreme) but every time i swollow the feeling of my oesophagus pushing down and then almost like a bubble afterwards, then a very loud bang in my ear, i cant turn my head left or right and when i do try to turn it feels like im stretching my oesophagus, i have teasted blood on a couple of occasions aswell and when the ENT put the mini camera down there last monday i could see a white area in my throat he took a still shot of that and said oh its normal maybe as to not panic me at that time with out getting the whole picture, he has ordered me a CT with contrast and hopefully thats going to be sometime this wk, but i cant help thinking that its not going to be able to be fixed or its made permanent damage to my oesophagus 
but thank goodness for amitriptyline or id be a nervous wreck right now, i really dont like taking tablets but i will for now until i know whats going on, its very true what you said we know our bodies more than anyone and we can feel whats going on inside, i really hope that you get some answers soon aswell, skatkat how are you managing on a day to day basis? Are you still working, iv had to go off sick againā:unamused:
I still work, although thankfully I can work from home a few days, I donāt think Iād be able to work if I had to go in full time. I find it really hard to concentrate because the symptoms are a huge distraction but Iāve managed to do it for the last 3 years, Iāve no idea how. I never thought it would go on for this long but my GP has put anxiety on my health record and now whenever I go to physio or any other appointment through the NHS they just look into my health record, see the anxiety diagnosis and start discussing maybe getting CBT (which Iāve completed, made no difference). Itās really hard to get people to take me seriously and Iāve spent quite a lot of my own money seeing specialists and a little bit through my insurance but that usually requires a GP referral so I still end up at that blocker. My piece of advice would be if you do end up paying for anything yourself keep all the receipts, I fully intend to claim this back from the NHS at some point because Iām really not happy at how Iāve just been ignored and every symptom being āanxietyā without and tests or investigation for other causes.
Thats handy you work from homeā:blush: im a carer that works 3 12 hour shifts one after another, and i totally get the distraction thing because it almost consumes you plus its so painfully with lots of symptoms, my ENT mentioned anxiety to me too but i soon put him straight and said its a symptom of what i have not the cause because i was never anxious before this all started i think he understood plus its the nerve pain we are getting from the calcified elongated styloids. Not realising but looking back over this last 4 months or so i found that muscle relaxants have helped me because every time i ran out of them the pain would come back severely but never making the link until about 1 month ago after doing a ton of research and found this amazing forum so then when i went to see the GP for the 7th time and i just said it ā i think i have eagle syndromeā he raised his eyebrows and repeated what i had just said to him which made me feel very small and crazy,
but i didnt let that put me off, i asked him to reffer me to a ENT and had my first appt last monday. I could be wrong but i think iāv only got it one side as its just the one side which is symptomatic but the scan will show whats going on.
Can you get the CT scan done on your health insurance so you dont have to pay for it?
Iām so thankful of this forum because it really does make you feel your not alone and the success stories keep me going and i hope it has given you some comfort and hope tooā:pray: