I’ve been suffering with severe right hand neck pain for 6-7 months. Tired osteopath and chiropractor (made it worse) acupuncture, massage, had a neck MRI to check out lymph nodes which showed an enlarged right hand tonsil. Finally got a referal to ENT. He didn’t mention eagles but dentist did.
Severe Right hand neck pain top of neck by ear, base of skull radiating down right bad side of neck
Pain when swallowing
Feeling something stuck in throat
Pain in lower neck down nerve to right shoulder
Pain in ear
Face pain/eye pain
Heart arrhythmia issues (ended up being hospitalised)
All right hand only
Lumps in neck by ear and on facet joints (inflammation)but lymph nodes clear. When I press lump behind ear I can hear grinding.
Neck clicks constantly
Dental x Ray attached you can see styloids albeit not clearly. I assumed cos not long enough it wasn’t but since being here discovered angle, curve and thicken was can do it? I’m female and a small build. Also have EDS, MCAS.
Any opinions hugely appreciated. I sent the x Ray to ENT though I’m concerned he will write it off at the first hurdle. The pain is making life pretty pants so I’m truly desperate to work out what is going on with me as just want to find a solution. Neck pain is so debilitating isn’t it!!
He’s going to send me for an mri of my ears and tonsils due to the tinnitus but I’ve emailed him asking for a CT too as I’ve found out that MRI hide the styloids.
Hi Vern & welcome to the site!
It doesn’t show the styloids as well as some x-ray images, and they don’t look especially long, but they have got very sharp points at the ends, and are quite angled. Plus if you are small obvs that makes a difference…You’re right that the width can cause symptoms too, but unfortunately you can’t tell how wide they are at the top from your image. A CT is ideal as it shows much more, and also it can show if there’s any calcification of the stylo-hyoid ligaments which can cause symptoms too. It could well be that an ENT dismisses the x-ray as the styloids don’t look so bad if they’re not very experienced with ES. But your symptoms are classic of ES; the pain swallowing and feeling of something stuck in your throat are the most well known symptoms (although not everyone has these), and pain in the neck , jaw and face are also common; often the styloids irritate the Trigeminal nerve and the Facial nerve. (There’s lots of info about possible explanations about the symptoms you’re experiencing in the Newbies Guide if you’ve not seen it)
I’d say given your symptoms it’s certainly worth pursuing a diagnosis of ES, so trying to get a CT is a good idea. We do suggest that maybe you try looking at some of the research papers, and geta copy of one or two which support your symptoms & mention the angle causing ES as well and take that/ send it to your ENT, it might help if they’re not that familiar with ES. And maybe he’ll take notice if you say your dentist has suggested ES?
If you don’t get anywhere then maybe try seeing one of the doctors on the list, although I know the waits are long…
Thank you for this. I don’t know what to do if he won’t follow my lead. It’s been a terrible day for pain. It’s like a burning stabbing aching pain - neck throa, face jaw and ears. Terrible pain by eyes. Thought it was sinuses for ages. Pain killers don’t touch it.
You can ask for an Rx to a nerve pain medication such as Gabapentin, Amitriptyline or Carbamazepine. These are often started at a lower dose to help reduce side effects & dose is gradual elevated to find the level that works best. That means you won’t necessarily get immediate pain relief. It can take several weeks to start helping.
Regular pain meds usually don’t help much. Other options are to try icing your neck (15 min on & at least 45 min off) using a thin towel or washcloth between your ice pack & skin. If ice doesn’t help, you can try heat. People have also found sleeping with their heads elevated can reduce symptoms somewhat so that’s another thing to try.
I’m sorry you’re in so much pain. We have a number of members who have EDS so it does seem there can be a connection between EDS & ES.
Just thoughts here… I am new to the group and like so many others posting I am in the getting a diagnosis stage. I am an R.N. and as well an X-ray technician. Here is in my "take " on this (and so many other posts) when it comes to visualization of the styloids and attached ligaments. There is no reason why a talented xray tech can not clearly visualize both the styloid and the soft tissue attachments. It has to to with positioning the head and neck but as well the settings on the xray machine. If you over shoot you lose all the soft tissue to black. This patient has right side symptoms and that side is overshot. It has to do with M.A ( Milliamperes) and KV ( kilovolt ) adjustments. The tech has to over ride the automatic machine settings and as well be real good at positioning the head and neck and aiming that tube. It strikes me that so many of the people here get sent round and about when simple xrays might speed the diagnosis along. Like…step one. Get a real good xray then go from there. We’ll see how I go. My xray results should be completed this week. I am curious as to how good they are and what’s there. The tech took a lot of shots. I came with and anatomy book and talked with her before she shot my films. It was all in my crude Spanish…I live in Panama. Just another challenge !
MCAS in the picture, be cautious on medications with regard to allergic response. I would be inclined to use mild moist warmth and find the head position that decreases the pain. Rest in that position. See if you get relief. Keep at your search for a physician with and an open mind with brains in it ! Lots of real good information right here on this site.
@WEASEL - thank you for sharing your radiology knowledge. Very interesting & helpful! What a great idea to bring an anatomy book to help clarify what you want your radiology tech to look for.
When I had my CT (w/o contrast) done, I specifically told the tech what the doctor wanted & mentioned I might have ES. The tech was a bit snarky & replied that he knew what to do because he saw “lots of Eagle Syndrome cases”. I felt a little put off since I had been told ES is very rare. The guy did a great CT series, but I’m still not convinced he didn’t have ES confused w/ something else.
I received my xray results yesterday…the written report. Not one peep mentioned about the styloids. The request form stated c spine series and skull. OK so if you want to see the styloids…it should be on the request. No telling what the films looked like. The docs office lost the approval form for my CAT scan and had me running around dealing with it. So far I am not impressed. Ultrasound reveals carotid stenosis bilateral…one side 50%. Now the challenge is to avoid a stroke. I feel like a time bomb. Not stoked. Lets see what the CT/w contrast shows. Approval of my insurance pending. ( $600.00 here in Panama) My insurance approves one test a month. Soooo if you are gonna drop dead…plan ahead.
Medicine today is a challenge . Loss of faith and trust a huge factor. Very easy to lose hope. That is why we are all so blessed here to have a helpful site such as this one. When I had struggles getting an acoustic neuroma diagnosed back in the 90’s I almost felt “vindicated” when I had brain surgery to resolve ( finally ) symptoms I struggled with for way too long. No computers back then to help me…just the medical library where I worked. A person without medical training might not even know where to start to look for help. The very surgeon that did my surgery was the one who wrote the medical text I found in that library. I was blessed. Never give up …
Shocking isn’t it. It’s one big fat cat industry where people are exploited and they don’t care about you. It’s crap here in the UK. We have a government who have decimated our healthcare system as they want to get rid of jt and unless you meet strict criteria then you are cast asunder. So many peoples illnesses get missed. Too many people dying. I’ve had a US of carotid so I know that’s okay. So despite my head, eye and face pain if it is eagles it would be the standard one. Still not heard back from the ENT as to whether he will do the CT. I just think they would be mad not to check it out even if it just eliminates it. I’m so sorry that you’re a high risk of stroke and it feels like you’re getting nowhere. It’s just downright wrong.
So yesterday I got the written reports on the first round of tests and both carotids are blocked…the left 48% . I will have to navigate the gauntlet of Panamanian cerebro-vascular physicians. From what I am observing so far…I am receiving prompt, appropriate care. Fortunate! Now awaiting CAT scan with contrast which I will probably have accomplished in a week or so. Order the ENT wrote was specific to the radiologist to scrutinize the styloid ( R/O Eagles) and as well create a 3-D print. He wrote that a certain radiologist do the exam as he said that doctor was quite good at head and neck/ styloid assessment. I will keep you all posted . Thanks for all your well wishes and prayers.
@WEASEL - my grandfather-in-law had carotids that were 90% blocked before his symptoms were bad enough that he got checked out. I’m telling you this in hopes that it will help you feel a bit more at ease about your situation. I know each person’s body reacts differently to the stresses placed on it, so there’s cause for you to be concerned. Happily, medicine has come a very long way since he was treated (1980s) so I expect the surgery for this is much less invasive & more successful than it was back then.
Yes. Thought for the day. Be anxious about nothing…etc. My Lord’s in control…driving the bus.
You are kind to share …the carotid factoid. Ultra sound today has amazing modalities. One of them is positioning right ovr the carotid and visualizing and measuring volume/force of blod…at and on eityher side of the obstruction. Equal both side…so righ there…at 48% obstruction the force and supply is equal both sides. That’s lying down… Heartening. ( meanwhile I try not to sneeze ! )
CT scan this coming week God willing. Gonna look at the styloid and get it into 3-D…amazing stuff! When I got my xray tech license there was no MRI nor CT scan. There was xray tomogram with contrast… HUGE difference !
So something I have been curious about is how many Eagle’s syndrome patients have dysautonomia and mcas. Is there a way to poll people? I think I saw someone say about 50% have dysautonomia. I get the sense that some, but fewer have mcas issues. I certainly have tinnitus, and dizziness as well, though my diagnosis is a bit up in the air as I’m waiting for an appointment,
@WEASEL -Thank you for your gracious reply. After I sent my “support” for your situation, I considered that it could be taken wrong. I’m glad you received it as I meant it. Yes! Philippians 4:6-7 are very good verses to remember when we have potentially life altering circumstances occurring.
I meant to say earlier that I’m really, really glad you’ll get some 3D images of your CT scan & that you were able to work w/ the radiology tech from a base of knowledge/understanding of the CT process so as to get the best possible diagnostic scans! We should all be so fortunate! I encourage our members to ask for 3D images to be included in w/ the CT slices. It’s amazing how many radiology labs are unwilling to provide those.
Well I tell yah. I went through this mysterious period of wierdness with my left ear, my hearing and balance that was diagnosed as middle ear infection. Treated for almost 2 years…no change. I do not believe had I not been a nurse, I would have not been able to discern the subtle symptoms that were neurological. ACOUSTIC NEUROMA surgery used to be a death sentence. Diagnosis is often made late. Surgical handling does not always go well. (total hearing loss/facial paralysis ) . Once I determined in my noggin I had a neuro problem and that my dear doc friend treating my ear infection was getting me nowhere…I basically demanded a neuro consult. No question afte ran MRI with contrast. There is was a tumor inside the acoustic canal with vestibular nerve pressure. Next hurdle was not letting the surgeon who did one a year do my surgery. He was the nearest and THE approved surgeon by my insurance company. Only by fighting the insurance company did I get authorization to have the surgery done at House Hearing center in LA , Calif.( top of the line ) My surgeon was the author of the medical textbook on this and the first to have ever done this surgery. ( temporal approach to base of the skull surgery. …heavy). I had excellent results. Fortunate.
Patients today need an advocate to susss through the medical delivery system so the can navigate safely.