Tired looking for answers

Hi guys, I’m new here. I was diagnosed with ES about 18 years ago back in Dublin. Since then I have developed a hiatus hernia and LPR. I was recently told I had Eustation tube dysfunction and a hearing test shows my hearing is down. They started me on a steroid spray and I am also on PPIs for the hernia and LPR. I have been struggling the last few years with constant Ent problems like throat ache, neck pain, ear pressure, headaches eye problems and I seem to be getting no-where. I can feel the ache in the styloid bone and it sticks out through my tonsil. I am more symptomatic on the left side. My head tends to feel heavy and I get some dizziness. I’m feeling exhausted and the Doctors really don’t know very much about it.

I went back to ENT again today and was so upset at his response I ended up in tears. He really didn’t have a clue. He tells me the scan says it’s a calcified ligament styloid and I asked how big it was and if it was vascular are not …his reply was “I don’t know what size it is and don’t think it’s vascular? He then goes on to say “if it’s bothering you we can just pull out the tonsil go through the muscle and take out the styloid ligament” And he can’t even tell me anything about it? As if I’m going to let someone like that do surgery. He doesn’t even know what size it is. He is now reluctantly sending me to see a head and neck surgeon. What a joke when you know more than the Doctor. my neck is swollen and feels awful. I can’t turn it very well without the sensation I’m going to choke. Would love to hear your stories…

I was lucky to get diagnosed by a doctor in my local hospital, after a panoramic dental x-ray, but the consultant knew nothing about it & told me that the styloid processes couldn’t affect the blood vessels. Initially I had pain in the side of my neck, pain in my jaw & toothache (which I found out later was Trigeminal Neuralgia, I think caused by the styloid irritating the nerve, & I was put on Amitriptyline for that which helped alot), pain turning my head… because the surgery sounded so risky, I felt I could live with it, & managed for a year or two, but then I began to get vascualr symptoms. I had pressure in my head & ears the whole time, so painful, pulsatile tinnitus, dizziness/ off-balance, fogginess, really tired… just generally feeling really ill. From what I read on here & research I did myself I thought it was maybe pressure on the jugular veins causing raised pressure inside my head (Intracranial Hypertension), so I asked to be referred to Mr Axon at Addenbrooks, Cambridge. I had a CT scan with contrast, which did show bilateral jugualr compression, & eventually has surgery both sides. He was brilliant- I’m not sure quite how interested he is in ES, but he picked up on the pulsatile tinnitus & IH symptoms (he’s researching pulsatile tinnitus, so that got his attention!), & he’s done lots of surgeries.
So if you could get a referral to him, which you should be entitiled to do through the NHS, I’d suggest that as your next step. He wanted to get the scan done at Addenbrooks, so whether it’s worth getting one done first locally to see what’s going on or whether it’s better to leave it & see if you can get a referral is up to you.
Unfortunately taking a long time to get diagnosed or treated, & knowing more than most doctors is pretty common on here! Because it’s so rare, alot of doctors either don’t know anything about it, or aren’t interested because they don’t believe you could have it… personally I think it’s less rare than the figures show, just under-diagnosed!!
Best wishes to you on your journey though!

Thanks for your reply Jules. I think i am going to go have a chat with my own Doctor and tell her the story. Hopefully i can get a referral to Mr Axon. You seem to have good faith in him. I’m glad it went well for you in the end… How are your symptoms now? How long since you had the surgery? Was it pretty bad afterwards? Hope i get some answers soon. Another thing i have but not sure if related to ES is arrhythmias. I’m so tired all the time and feel like my head is so heavy on my shoulders. Sometimes the symptoms settle for a bit but they always come back. Delighted to find this site and lovely to chat to you.

Some people have had palpitations etc.- occasionally the styloid process can irritate the vagus nerve, which controls heart rate, so your symptoms could be that, or it could be a coincidence…
After surgery the vascular symptoms are almost completely gone- I get a little bit of the head pressure back if I get very stressed, & when we flew last summer, but for the most part I feel amazing compared to how I did! I still get some nerve pain & still take a low dose of Amitriptyline, but it’s improved to what it was before surgery. I had the first surgery in 2015, 2nd in 2016, & the recovery was nothing like as bad as I expected! First surgery I found afterwards it was painful to chew or open my mouth wide for a week or so, just had soft foods & smoothies, & it was 3 weeks before I could turn my head enough to drive safely, but the 2nd surgery was much easier, no problems eating at all! I had numbness from irritated nerves on my ear & cheek afterwards, which has taken a year to go completely, but give me numbness over pain any day!!
Hope you can get some help!

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Hi Aud
I recently was diagnosed with Eagle Syndrome as well. I was accidently Diagnosed after moving to Cleveland Ohio. I was constantly diagnosed with reoccurring ear infections. Finally I was sent for a CT and immediately sent to see a Surgeon. I had Just about as many complications as you. Like Jules my first side has improved my life tremendously. Hopfully you’ll be feeling better soon. Almost forgot I also had many arrhythmias as well. My surgeon says I had the most compelling case of Eagle syndrome they have ever seen at the Cleveland Clinic. Eagle Syndrome is so rare very few Doctors know about or seen it before. I don’t think they have experts on Eagle Syndrome. Again Good Luck getting some relief and answers.

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Hi Aud. Im from Dublin. Who diagnosed you in Dublin? Are you still in Ireland? Ive also been diagnosed but finding it very hard to get help. One of the hardest things is doctors not believing your symptoms.

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Hi, I was diagnosed in 2000 in Beaumont hospital Ent Dept. Can’t remember who it was but i’m going to request my notes from there so i can find out. I was not always symptomatic until the last few years which means they have obviously grown. I moved to the UK shortly after and they didn’t seem to be bothered or have an idea on ES over here.

Tired of looking for answers too and feeling tired!

Hi Aud

A CT scan of my sinuses picked up elongated calcified ligaments in May 2016. The right measured 46mm and the left is 41mm which is intermittently calcified.

I too haven’t had any joy and feel ES is a very grey area.

My symptoms are constant ringing/pressure in my ears (24-7) for many years with neck and shoulder pain, especially on and after turning my neck. Tiredness and my head never feels clear with the ringing.

The first doctor I saw told me that all my symptoms are related to ES, that I feel the ringing is in my ears but it’s coming from behind. He said they used to remove the styhoids but they no longer do this and that now I know what the cause is, I should feel better which I don’t!

It’s been a grey area with other doctors I’ve seen who say my symptoms are not related to ES. I feel no one is interested. My own doctor who says I’m getting fixated and that he wouldn’t have an operation as its so close to the arteries.

Another ENT consultant has said he doesn’t think my symptoms are related to ES. He would operate but it’s not to say this would elevate my symptoms. I feel I’m struggling on with symptoms and nothing is ever resolved, just living with it.

This site is great for sharing our symptoms and experiences and I have to say that Jules is so knowledgeable and helpful x

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Hi Aud. If you get any answers back from Beaumont please let me know. I’ve been through 4 ents there already and still looking, even with diagnosis. Im going 7 years on and off with this now and have developed heart problems. I dont know if its from ES or the worry of it all.

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Thank you for your replies. I also have benign arrhythmias and was also wondering if it was related. Jules has been very helpful indeed. I seen my Doctor yesterday and she is going to try refer me to Mr Axon in Cambridge also ENT here are refering me to a head and neck surgeon so hope i get some answers. It’s frustrating as they just try fob you off and do not like the fact we know more abut the condition then they do. I do also worry about surgery as i got told the same thing in Dublin about it being to close to arteries and cranial nerves that it was risky. The thing is sometimes i’m ful of symptoms and other times i can cope. I have got fluid build up in the mastiod bone and they want to do a Eustaion tube dilation to releive the pressure. My hearing is down and i have flat B type vertigo on the right ear and very negative type C on the left. It’s so stressful when you feel so tired all the time and you wait months to see a Doctor only to come out feeling unheard. :frowning: x