I’m currently struggling with what could be eagles syndrome. My neck issues originally started when I went to a chiropractor who cracked my neck without taking an x ray. It triggered a lot of scary symptoms. It turns out that I have a partially fused atlas (c1).
The neck pain disappeared for over two years and recently it’s started again. I went for a CBCT scan of my upper cervical which shows elongated styloids.
My symptoms started off as feeling very unwell and tired. Getting out of breath easily. The base of my skull hurts badly and there’s so much pressure that radiates around my head. The ear pain and tinnitus has also been horrific and it feels like I’m being choked or something is pressing into the back of my throat. My mouth and tongue burn and I’ve been having major anxiety non stop. I’m really scared. I want to be referred to Dr Axon as I live in the U.K.
Unfortunately I can’t go private so I’m being referred to the musculoskeletal team first through the NHS.
Do you think it’s worth seeing a gonstead chiropractor to ensure that my cervical
spine is in correct alignment to relieve any possible nerve pressure whilst waiting to see the musculoskeletal team for my styloids?
I want to make sure my symptoms aren’t being caused by a misalignment. And it would make sense to rule that out.
Any words of advice would be greatly appreciated.
I just want to go back to normal and feel like myself again. I’m so scared. My anxiety is bad.
Do you think I should take something like
Amitriptyline in the mean time so that hopefully it becomes easier to ride out?
Your styloids do look long, & quite close to the cervival processes…we’re not doctors on here though, just had ES ourselves. I don’t know enough to comment on any neck misalignment I’m afraid, but looking at the length of your styloids & given your symptoms I would think that it’s more than possible they’re the cause.
There’s no cure for ES other than surgery, so the musculoskeletal team won’t be able to cure you- not sure what they’ll be able to do to help, haven’t heard of any UK members being referred for that. The misalignment is definitely worth exploring, if you see someone with experience of ES, so you don’t get damaged again! But personally I’d be pushing to get referred to Mr Axon as well if you can- he has a long enough waiting time as it is! There is info in the Newbies Guide Section & links to research papers which state surgery has good outcomes- if necessary perhaps you could take copies to your GP & ask to be put on his list straight away?
It’s definitely worth trying the nerve pain meds in the mean time too, & some members have found steroid/ lignocaine injections into the area- this can be done under ultrasound. I’m not sure if anyone you’ve seen so far could do that?
Sleeping half upright can help, & either ice or heat can too.
There’s lots of info about possible causes of ES symptoms in the Newbies Guide Section- the vagus nerve can be irritated by the styloids & that can cause breathlessness, tiredness & anxiety amongst other symptoms.
Sounds rough for you, I hope this helps…
Those are nice clear images, & your styloids look both long & thick. Jules has given you great information. Since she’s in the UK she understands how the medical system there works better than I do as I’m in the US.
I’ve heard of but am not familiar w/ the Gonstead chiropractic technique so don’t know how aggressive an neck adjustment is. As Jules noted, if you see a practitioner who is familiar w/ ES & will do your cervical work gently & with caution, there is probably no harm in doing it. Getting your neck snapped side to side for an adjustment is ill-advised & would be dangerous w/ the length of your styloids. You symptoms are all ones we’ve noted w/ ES so that’s another clue that you’re on the right path to getting help & being able to recover.
I will pray you’re able to get a referral to Mr. Axon very soon so your wait time to see him isn’t so long.
Thank you Jules and Isaiah!!!
Your replies are much appreciated!
I went to my gp yesterday and she says she can’t refer me to Dr Axon because I don’t live in that area… I don’t know how to get myself referred through the NHS as I can’t afford private health care? My gp is referring me to the ENT team as well and maybe they could refer me to Dr Axon? I’m really unsure of how it all works. Dr Axon works in Cambridge and I live two hours away. Can the ENT team refer me specifically to Dr Axon despite where he is located?
I just started taking amitriptyline last night too. Hoping that helps somewhat. Will it help with the choking feeling in the throat? Is it normal for the symptoms of ES to fluctuate?
I hope it helps with anxiety too, I feel like my skin is burning where I’ve become so stressed.
I thought now with the NHS you can ask to see a consultant at any hospital, that you’re not limited to your area any more?! I’ve sent you a message with some other info. Hopefully your ENT team could refer you otherwise, but it’s more delays…As ES is a rare condition it makes sense to see someone who is actually familiar with it, it wastes less NHS time too!
The choking feeling in the throat can be due to irritated nerves, rather than the styloid is poking into it, so nerve pain meds can sometimes help. I found Amitriptyline helped me with the pain, & also helped with sleep which was a bonus! It can take a couple of weeks to work though.
Thanks Jules. I’ll see if I can get referred to Dr Axon sooner somehow.
I’ll keep taking the amitriptyline and hopefully
I’ll see some improvement over time. Painkillers do nothing for the pain. Did you have extreme pressure in your head and neck? My head feels like it weighs a tonne and I feel dizzy too. It’s giving me a lot of anxiety.
So I have the poking feeling as well. I thought it was the styloid (I can actually see the back wall of my throat sticking out) but it wasn’t. I had surgery and still have it so it’s presumably nerves like Jules said. Would be good to try the meds to know for sure.
I had painful head & ear pressure, yes. Not nice!
I’ve managed to get my doctor to refer me to Dr Axon. Unfortunately they can only do it privately, so I’ll have to pay for the consultation and tests. Apparently surgery can cost £10,000 and I wouldn’t be able to afford that at all. And that might just be for one styloid.
My appointment with Dr Axon is on 8th June. So less than 2 weeks.
I’ve also been referred to the ENT team on the NHS and the doctors have specifically mentioned eagles syndrome on the referral, so maybe that could also be helpful?
I’m really hopeful that somehow I’ll get to the bottom of this. Waiting even a few days feels impossible right now with my symptoms, but I’m grateful I won’t be waiting months.
It’ll be a 2 hour drive to see Dr Axon. But it’ll be worth it.
Really pleased that you’ve got an appt quickly! I hope that it goes well for you, not sure if Mr Axon will give you a diagnosis without a CT, but it’s a good step forward. Hang in there!
So glad for your good news, but sorry he isn’t working through NHS for ES surgery at the moment. Maybe you can get some insight at your appointment. I’m also really glad you got an appointment so quickly!
Hi everyone. I’m currently waiting for a CT scan with contrast referred by Dr Axon on the NHS.
I’m really struggling with my symptoms. I keep getting dropping sensations in my head like my brain is falling out. Has anyone had that? It creates this wave of anxiety feeling down my body and its hard not to panic.
I ended up stopping taking amitriptyline after a week because i got scared if they were giving me symptoms. But i think i might have to start again because my symptoms are getting worse. How long does it take for amitriptyline to work? Does it really help take the pain away? Is 10mg enough each day?
Your symptoms sound like they may be related to IJV compression. Do you know if that is something you’re experiencing? If so, we’ve had a few members who found that taking a blood thinner helped while they waited for surgery.
Jules takes amitriptyline, but I think, 25 mg/day. Doctors like to start you on a low dose so your body can get used to it & not have bad side effects then gradually increase it to a more helpful level. This is something you could ask your doctor about when you see him/her next. I expect that Jules or someone else who takes it will also reply.
thanks for replying so fast Isaiah. I have no idea if it’s related to IJV compression. I’ve not had the CT scan yet. I don’t know how i’m supposed to wait feeling like this. Can you die from this?
A rare few people have died from ES but it has been from having a stroke because the styloid poked into the internal carotid artery (which takes blood to the brain) & caused a blood clot. As far as I know, that can’t happen w/ the internal jugular vein because it takes blood away from the brain.
I am sorry you feel so terrible & help is not hurrying your direction. I hope you’re able to get that CT scan soon & Mr Axon can expedite helping you once he has the results. I will pray for that.
I had that same sensation; it was horrible, so I sympathise! I had bilateral jugular compression of the jugular veins by the styloids, which can cause the pressure to build up in your head & causes Intracranial Hypertension symptoms. Mine went after surgery thankfully!
I take 20mg amitriptyline which helps nerve pain, so maybe up yours & see if that helps? It doesn’t help with the IH symptoms, but does with nerve pain for me. It can take a couple of weeks to buid up enough to work, if it doesn’t then there are other meds you can try.
Mr Axon is really good, it’s such a shame about the waiting times…hope you hear soon about your CT thinking of you…