Hi everyone. Thank you for letting us join this forum/group. My wife Denese has set this up for me as I’m the one with ES but not the best on computers. We live in New Zealand and for the past six years have been suffering from what I can only describe as a nightmare.
I have been told so many different things from a minor stroke, acid reflux, cervical strain in my neck causing mayofasiacl pain, TMJ, TMJ d, migraine, central sensitisation, and my personal favourite anxiety! We have boxes and boxes of records from all this, none of which I feel I have? Maybe TMJD but the rest, no.
I’ve almost ended things several times as the pain and off balance has been debilitating.
The last few weeks I’ve developed what I can only describe as something stuck in the throat, and I’ve had difficulty swallowing. Because of this I was sent to Thames hospital for a CT scan. The results came back as Eagles Syndrome……
This pretty much is where I’m at, other than to say I’ve been getting treated for TMJ TMJD but nothing has really worked.
My symptoms started three months after getting new dentures fitted as my old ones hard worn out. I started getting slight balance sensations, then a blocked left ear, then BAM over night head pressure like I’ve never felt in my life! Dropping sensation, moments when I couldn’t tell if my head was straight or not when laying down in bed. Block ear on the left side, all symptoms on left side. Ringing in my ears, migraine, sore feet! Brain fog, horrible sinus problems,ear infections, stiff neck, sore neck, tight muscles in shoulders, neck and right side of my upper back. The latter from being bed ridden three years, I just couldn’t walk to the next room I was so ill.
You could not touch my face, temples or back of my neck, I’d want to throw up, I was so sore, and unwell even water from the shower on the back of my skull, shoulders would make me spin and feel nauseous.
Symptoms now, today. No migraine, no ringing in ears, no real facial pain. I do have the balance this is the worst, I so hate it. Left ear has WET wax all the time. Blocked nose, lots of snot, never ever had this in my life? Just recently feeling of something stuck in my throat, hard to swallow, stiff and sore neck, no mobility, still locked up right side of back, nothing unlocks this, no treatment has helped.
Right now we are just waiting in limbo, have been told the CT scan shows ES but that’s all I no at this point. Did get a call from Dr James Saunders reception in Hamilton today saying they have my report but no idea how bad I have this condition, what the CT looks like or even what I’m ment to do next.
My wife had to give up work to care for me, we have had no income for six years. ACC did not cover this, and we don’t have insurance outside of ACC, so we are in the hands of New Zealand’s very broken health system unfortunately on the wait list in the public sector. The lady today said it could be up to three years wait.
My mental health is extremely low, both my wife and I have both had breakdowns because of this. I used to be so active and fit, very healthy and positive. This condition breaks your spirit and I’m so sorry for you all and your loved ones who have had to endure this horrible experience.
Thanks again for letting us join.
Kind regards
Matt and Denese.
FYI I’m a 55 year old male, who was very very fit and active prior.
You may have many of the things listed that you think you dont have. The source could be your styloids creating a tangled mess inside your head with your cranial nerves, muscles, arteries, etc. Did they measure the styloids. If not you could ask the Doctor to have them measured by radiologist. He can also ask if radiologist sees impingement on vascular system.
First step is to get your images from the CT. I suspect you are going to have a version of vascular eagles but you have to get the pictures. You cant just rely on the report because so many times things get missed. You can then take the pictures and use an app like Radiant to show Doctors and help you understand. I know that it all seems so daunting.
There are medicines you can try to help such as gabapentin. I take a very low dose. I also take pepcid every few days because i have silent reflux.
I take it you arent a Maori. I just learned that they have access to different health care system. But Maori or not the issue will be the same…finding Doctors who know what they are doing with Eagle syndrome.
If you do a search here you will see a few New Zealanders describe what they have been through with your system. I think there is one person right now trying to navigate it.
At least now you know what you have to look at for the source of your nightmare. A styloid horror show.
If you do have vascular Eagles this is a reason to expedite treatment but it will be a fight. You should ask for an MRI . If the Doctor agrees to order one also ask for the Fiesta, fiesta-c or 3d ciss version so you can see the cranial nerves.
I’m so sorry that you & your wife have been affected so badly because of your symptoms- sadly many ES patients have been dismissed with anxiety so you’re not the only one…
It does sound like vascular ES, the dropping feeling , off-balance , head pressure are all symptoms I had from Internal Jugular Vein compression; this causes increased pressure inside the head (Intracranial Hypertension) which is horrible. You describe wet wax coming from your ear- sometimes with the increased pressure it can cause a leak of CSF (the cushioning fluid around the brain), I wonder if you have had that? But it would only happen if your ear drum isn’t intact…Runny fluid can leak out of your nose too. A CT scan with contrast would show if there is any compression on the blood vessels, not sure if you’d be able to get that done?
Lots of members have had sinus issues too, but we’re not sure why…
The common symptoms & possible explanations discussion I sent you a link to explains the different nerves involved if you’ve not had a chance to read that, & there’s also ‘2 Minute Neuroscience’ videos on YouTube which explain the cranial nerves, different ones for each nerve…
@BraveKat has posted about navigating the NZ system but does have private health insurance, here’s a link, sorry if I sent you this already:
New member from NZ - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
As for what to do next, as there aren’t many options in NZ, if there are any skull base/ otolaryngologists in your area, or a head and neck cancer surgeon, or a head and neck neurovascular surgeon, would you be able to look into that & get a referral to someone? If the Hamilton doctor doesn’t come through for you obviously, that doesn’t sound very hopeful…
I’m so sorry that you’re having to negotiate the healthcare system too, I’m UK & ours isn’t much better, and the Canadians have equal trouble too. Sending you & your wife a hug 
No, not Māori, Thank you so much for all the information, I really am greatly appreciated of it.
It’s just very very overwhelming and we are both burnt out. That information is fantastic, thanks again.
Thank you for the very kind words. I will do my very best to look into all of this asap.
I’ve had the CT scan last week but no contrast dye as I was extremely anxious about having that done.
Have no seen the images, but have been told the soonest I can be seen to talk through the images is April the 8th 2025.
That’s with me paying privately, if I wait to go public, it could be anywhere from 1 to 3 years!
We are just exhausted, broken and devastated.
Thank you again, we really appreciate it.
Your situation sounds so horrible. I’m sorry you’ve been living that nightmare for 6 years & for the ways it has impacted both of your lives. I’m also sorry you have to wait until April to see a doctor who can give you some answers. In the US cancellation lists are kept by doctors’ offices. You could check to see if there is such a thing for the doctor you’ll see in April. We’ve had members with distant appointment dates get them moved much sooner by being on a cancellation list. It’s worth asking about. I will pray for your appointment to get moved up to an earlier date. 
Hi @Denese, I am so sorry to hear the difficulties you have been experiencing with your symptoms and not being able to find answers that convincingly give you a path forwards.
I too have had the same experience, despite having private insurance in NZ. The trouble is, most doctors haven’t heard of Eagles Syndrome and even when they have, they don’t know enough to be able to offer help.
My journey has been 10years to date and I feel being a female in her 30’s really has delayed the process as first thoughts from the many GP doctors I’ve tried to confide in, is that I just have anxiety. The number of ECGs I’ve had over this period is mind blowing - and when the sinus rhythm comes back looking normal, I’m told that nothing is wrong and to be on my way. For me, being repeatedly fobbed off is the hardest aspect of this to bear, but the pain keeps me going…knowing it’s not in my head like they say. So I can really empathise with you and the gruelling path you have been on. Through my research and experience to date though, there are a select number of doctors familiar with this condition and only one I know of who has operated (or associated with) vascular ES to date, that being Dr Saunders. So in that way, I think you are in a fortunate location for this condition being Waikato District. I’m not sure how specialist appointments work in the public system outside of Auckland, but will you see him in his private clinic or at one of the Hamilton Hospitals? Up to 3 years is a long wait. I understand it isn’t easy with neither of yourself or your wife able to work, but are there any one-off payments you can take advantage of via WorkandIncome to fund a private appointment to help speed things along and get a few more questions answered in the meantime? Typically a consult might be in the range of $250-300, but could be best to check with his reception directly. Alternatively, ‘give-a-little’ seems to have positive outcomes for patients and families in need of financial support for medical assistance - especially of rare conditions.
Aside from this. have you noticed turning your head a particular direction exacerbates your symptoms? For me (and a few others I have read about on the forum), lying on a pillow also creates further pressure in the head so during the day while I’m bed-resting, I try my best to sit up but with as much as my back supported as possible and use a wheat-pack on the shoulders to try to reduce muscle tension. I’ve also recently started On a small dose of Pregabalin twice a day which deals with a lot of the niggly pain in my head, face, jaw etc.
As others have said, if you can get hold of the ct imaging you may be able to share it on here to get others feedback on what they see. Reading my own ct is how I confirmed I had the vascular version.
I really feel for you and what you are going through. Reach out if you have anything you think I might be able to give thoughts on.
Sorry I just saw your responses from a few hours ago. I am having surgery with Dr Charles Davis in Wellington next week. If you are considering going privately, I’m sure he’d be able to make an appointment sooner if you reach out to Mel his receptionist via email and explain your distressing symptoms and lack of any way forward currently.
Also, another member on here had surgery a few years ago with Dr Kevin Smith in Auckland via public system, but when I reached out to make an appointment recently I was told the soonest would be mid-January 2025. He also reviews patient imaging prior to accepting a consult so may be picky about who he takes on as a patient. Could be worth reaching out though as an alternative.
That is so ridiculous. Get a copy of your images on a disc . Use a 3 d viewer like Radiant. There are people here who can take a look.
That is an impossible wait! I hope the advice that @BraveKat has given helps, it’s handy that she knows the system, I can’t get my head around the health care services in each country, they’re all so different! Would any family help fund an appointment otherwise, although I guess you’d have done that earlier if you could’ve!
The dye with a contrast CT isn’t usually an issue unless you have allergies, it’s iodine based, although obviously another CT would be more radiation. The MRI scan contrast material is an issue for some people (Gadolinium), but that’s different to the CT contrast.
Although given what you’ve said about the healthcare & costs, perhaps to get another CT done would be an issue anyway?
Thinking of you both
THANK YOU!
Gosh everyone on here is so lovely. Denese started work five weeks ago, she just had to we have gone through all our savings from six years of this. Then of course the last three weeks I’ve gone backwards with this throat swallowing thing, hence the CT scan last week etc at Thames Hospital.
We live in Waikato, but lived in Auckland most of my life. I’m sitting here thinking you poor girl, ten years of this is just simply unreal….
The part that destroys you is them telling us it’s in our heads, you have anxiety, what absolute rubbish. This condition has given me anxiety unfortunately.
Would love to reach out to you if you’re comfortable with that? I can call you anytime that suits.
FYI
Dr Saunders reception has said 500 to 550 for 45 min consultation and then I think if you need a camera that’s a further 189.00.
Surgery starts at 15,000 per side and goes up depending on the case.
Being April as the soonest they can see us gives us time to afford the appointment.
I’m so embarrassed to even ask for help so I could never do a give a little but thank you for suggesting that as an option.
Thank you again so much for your reply, I’m very greatful.
Thank you so much for your kind words, we really appreciate it.
You might want to delete your number and send it via private message.
@Denese - I deleted your phone number from your post. We try hard to protect your personal privacy as our forum is visible to the public so we’re careful to keep personal contact info off the public part of the forum.
Please resend it to @BraveKat via a private message. To do that, click on her screen name as it appears above her post/message to you. That will take you to a page where you can send a private message that only she can see.