Thank you for sharing your story. It’s great to read that others have similar issues and experiences. 
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Crazy!
I had symptoms for years which I thought were from my wisdom teeth as I was told this by my dentist (he drove a Porshe and holidayed in the Seychelles every year so I was skeptical and too chicken to have them out!). Since the Eagles surgery I don’t have those symptoms any more!
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I can’t wait until the surgery 
Dizziness, pain above my eyes. Face tingling. Neck pain. Back pain. Palpations.
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Hey @Jules
As you know, my situation is not Eagles related, but I get some wicked eye/facial/jaw pain. At times I’m tempted to rip my eyeball out with a teaspoon just to relieve the pressure behind my eyes. I’ve had the medicos repeatedly pointing at dental. Initially, they said I was grinding my teeth at night giving me a formfitting mouth guard, then they recommending removing some teeth to ‘make room’. Next it was decided to remove all of my top teeth, ‘That should fix it…’ but it didn’t. Then most recently they decided it better to remove all of my bottom teeth too 
When this didn’t have the desired effect the dentist turns around and says “Well, your teeth won’t be giving you any trouble in the future…” No, because you’ve ripped them ALL out now. GGgrrrrrrrr
As I said to ‘theFury’
Merl
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Oh no 
Sounds like the trigeminal nerve maybe? I have a couple of molars which ache most of the time, but they’ve been checked & nothing wrong with them so I’m keeping them!
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That’s a terrible story, Merl! I’m sorry you’ve been through that & without any pain reduction!! You’d think a dentist above all would know about the trigeminal nerve & might consider its contribution to the teeth pain & go looking for what is bother the nerve rather than simply removing teeth!
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Hey @Jules and @Isaiah_40_31,
Ahh, yes the trigeminal neuralgia diagnosis, I’ve had that one too… repeatedly. Over the years I’ve required 6 neurosurgeries and the idea that the trigeminal has not been cut (or at the very least, disturbed) is impossible. I had a neurologist swear by Botox as the miracle cure and if the cause was neuralgia, there may have been some benefit. I think the closest I came to an answer (if you could call it an answer) was from an ophthalmologist “You’ve had brain surgery… …what did you expect…?” I didn’t expect THIS.
Some of these specialists maybe top of the class for their specialization, but outside of their specialization, their knowledge is not as comprehensive as they portray. As one such specialist stated to me “I’m the Dr, I’ve completed years of study, so I know. You? You’re just the patient, you wouldn’t know…” I wanted to rip his head off, arrogant sod. I know agony, but that doesn’t count. “You just have a low tolerance to pain…” they said, but what I have now developed is a low tolerance to know-it-all medicos. They like us to fit perfectly into their ‘diagnosis box’, but often when we don’t fit, they like to put it back on us, like we’re in this position by choice. Who on earth would ever choose this? Not I, that’s for damn sure.
Merl
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That sounds just miserable Merl
Sharon
Very well said Merl, what a cheek saying any patient just has a low tolerance to pain because they can’t work out the cause
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I’m sorry to say but your take on the know-it-all doctors made me chuckle. It was the way you wrote it, not the fact of the matter. I really appreciate your perspective @Merl. It’s realistic & unfortunate that you have found yourself treated so disrespectfully over time.
We’ve intermittently joked on here that doctors who dismiss ES or make light of the symptoms i.e. they’re psychosomatic, you’re a hypochondriac (not in exact terms), etc. deserve to end up w/ an ES diagnosis themselves, so they can experience first hand what many of us have. They’d surely be whistling another tune!!
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Ohh yes, I’ve had those psychosomatic, hypochondriac, idiopathic in nature, drugs/alcohol related etc, etc type diagnosis. I won’t put up with it anymore. When I can see them heading in that direction I tend to stop them in their tracks “Don’t even go there Dr. I can see your angle…Don’t”. The last dr I stopped had this sheepish grin, he knew he’d been caught out trying to lead the patient (Me) into some kind of psych diagnosis. I played those games before, never again. Often it’s more a case of “Well, we’ve runout of ideas, so it must just be YOU!!!” Than a firm answer. It’s a bit of a safety thing for dr’s 'The patient wants an answer. I can’t find a cause, so I’ll put it back on the patient and there’s your answer."
The day after the 2nd craniotomy I’m laying in bed, clutching my skull, trying to prevent my head from exploding and nursey says ‘What’s your pain rating out of 10?’ I said “15”. “Ohh it cant’ be THAT bad” she says “Well Love, you lay down on the floor and I’ll boot you in the head. Then you can tell us all about it.” “Oh, there’s no need to be so offensive” she retorts “Then stop asking stupid #@%& questions. You want a rating, 15” as my head is pounding, with my eyes about to explode from my skull. I got my medication and I never saw that nurse again. My wife tells me I am not a nice patient, but when I’m in pain my tolerances for fools is about 0.000001 and on a hair trigger. My tongue can turn into a lethal weapon and god help anybody in the vicinity, NASTY.
I haven’t always been that ‘Non-compliant Patient’, I was brought up with that “The Dr is ALWAYS right” paradigm, and lived it for years. It’s been my experiences with health professionals minimising my concerns, making pseudo diagnosis and buck passing their responsibilities that has driven me to this point. This is about me and my health, not them and their egos. Nope, won’t play that game no more.
Merl
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I have my ct scan this evening and Mr Cousins appointment on Wednesday. I’ll keep you all updated.
Thanks to everyone who’s contributed and told their stories.
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Can I ask everyone?
When I do anything like a quick up and down stairs or quick walk in the rain to my car I feel my heart beating out of my chest.
Is this a symptom? I’m fit and healthy in all departments apart from what’s going on? Mr cousins said that when we do anything we sometimes hold our breath and bite down or grind our teeth 
could this be a reason?
@theFury - It is my personal opinion, somewhat based on my experience w/ ES, that your heart rate accelerating to an exaggerated pace w/o significant cause, is from your vagus nerve possibly being irritated by your styloids. I had some weird heart symptoms among my many ES symptoms. I was a long distance runner when I was diagnosed so was in excellent aerobic condition. I did see a cardiologist & discussed the vagus nerve aspect with him. He hadn’t heard of ES but was quite interested in the connection between my heart symptoms & elongated styloids so had me do a stress test & get an echocardiogram all of which were fine. I was thankful he didn’t roll his eyes & send me away.
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Had my sinuses CT scan. Definitely on the operation schedule.
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For Eagles? Will that be privately or NHS?
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Oh too long of a story for now. 
My worst symptoms started in 2023. (though my husband and I have been reviewing symptoms I have had since 2021 but wasn’t connecting them)
I completely understand your frustration with so many doctors who missed critical things for you.
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Hi all.
I had the CT scan on my sinuses only 
. They are super long however the image cuts off at the bottom of the sinuses. Idiots!
Left Mr Cousins care now and he has passed me onto the ENT department. I felt as if he had kinda washed his hands. He had no answers from the scans I have had done either. He showed me the 3d sinus CT but had nothing more to say.
He did say I have vascular eagle syndrome and the ‘bundle’ in the neck is being restricted due to the styloid especially on my left side.
I can’t wait another 3/6 months to see some other ENT specialist!
Anyone have any advice?
It’s getting worse.
While I don’t have advice - I am so so sorry for the way the medial system has treated you!
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I’m curious, how did Mr. Cousins know you have vascular ES if all he could see is your sinuses? Sounds like there is some incompetence in the radiology clinic if your CT was also supposed to include your neck.
I’d call Mr. Cousins’ office & request a referral to Mr. Axon if you can travel that far. What’s the point in waiting to see another ENT who will likely be dismissive & unable to help you when you could wait & ultimately see someone who can help you?
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