Hi I’m a new member who is desperate for some help and not sure where to turn to and wanted to find out what people who have experienced eagles and got a diagnoses and treatment thought. So here goes.
Symptoms started 6 months ago with a sore throat on the left side where my tonsils used to be only it didn’t feel like a normal sore throat it felt like I had burnt my throat and soft palate, pressure feeling right below my ear on neck, pain in turning neck especially putting right ear to shoulder, pain under chin where angle of jaw is, swollen lymph gland under jaw, cracking and grinding noise in neck on left side and the last strange one is it feels like I have a thin bone running down behind the angle of jaw ( is this possible, it isn’t on the other side). I had a panoramic x-ray done yesterday and asked them to check my styloids but he said they were fine but I didn’t get to see the x-ray. Sorry to go on but this has taken over my life.
Your symptoms sure sound like Eagles. Some people have been diagnosed with a panoramic x-ray, but for some, like me, the styloid isn't easily seen on x-ray. The best way to diagnose Eagles is considered to be a CT scan with contrast. Do you have a doctor that can order one for you? And when you get one, the radiologist has to be told to evaluate for elongated styloids.
Thank you so much for replying, did yours not show up on the panoramic x-ray either then? After reading other comments about eagle syndrome I was sure that this was my problem and then the maxofacial specialist I saw yesterday said the styloids process looked fine but thought my back wisdom tooth was causing the pain and he wants to remove it even though I have no pain there! And said if that doesn’t help then he would refer me to the chronic pain team. I did mention having a scan done but he said it wasn’t necessary. Am just so fed up, after seeing an Ent, physio, gp and now the maxofacial guy I feel no further forward
Unfortunately, yours is a common story. Can you get to another ENT? Maybe you could print out some information from this site and show them. It's hard to know what to say to doctors - some get upset if you're trying to diagnose yourself and others are more open to it. When I was trying to convince one of the ENTs that I went to, I told him that someone told me I might have Eagles syndrome and asked for a CT scan with contrast. Luckily, he agreed to do the test and then confirmed I had Eagles. Sometimes you have to go to quite a few doctors. Have you seen the doctors list? I don't know where you are in England, but there's a couple doctors with Eagles experience.
It is difficult, especially UK, because GP's aren't so keen to keep referring you. It does sound like ES symptoms... There's also a lot of ignorance about how long the 'average' styloid processes are- there's a big variation between 2-4 cms which some doctors consider as normal! There's also research which shows that the angle of the styloids can cause symptoms too. If you can persuade your GP to send you for a CT as Heidemt says then that will show the styloids better. (My left showed up well with a panoramic X-ray, but I don't think the right did show as well.)
If your GP is reluctant, you can ask to see a consultant privately - I don't know how much it is now, but a few years ago my husband had to do that and it was £200, if you can afford that- and then had the rest of his treatment on the NHS. If you could travel to one of the doctors more familiar with ES and pay for that consultation, they might be able to organise a CT for you on the NHS. You can ask for a second opinion to be referred to someone more knowledgeable, but you might be waiting a while. I think the nearest one on our list is at Reading; there's not many on our list from the UK!
Good luck!
Thank you very much everyone, I am down in Devon and all the specialist are up country and with two young children and no one to look after them it would be almost impossible to get there. I have to go back to see the maxofacial guy to have this wisdom tooth out so will be asking for a CT scan but not sure if he will as he said he was sure it wasn’t my styloids causing the problem! Can a gp order a scan? If so who then roads the scan report?
I would imagine a GP could request a CT scan, they would need to make sure that the length of the styloids are looked at, and the angle. A CT with contrast is the best scan; they inject dye into the veins and look to see if the styloids are compressing any blood vessels. The radiologists read the scan, but if you can get one done then if they'll let you it would be good to get a copy! That seems to be easily done in the US, but I'm not sure if you can do that UK- I never thought to ask! At least then you could have a look at it yourself and see what the styloids look like. If you could get a scan done then maybe the results could be sent to one of the consultants if it shows anything, which would save you an unnecessary trip? One of the moderators on another site did some info about your rights as a patient; I'll see if I can find a link if it's helpful.
I've found the article Jules G wrote- you are entitled to see another consultant, but if you're stuck for child care then that doesn't really help! It doesn't mention about if you're entitled to ask for a scan, but if you want to read the article, then here's the link (it's in the ES Info section too) : http://www.livingwithpsoriaticarthritis.org/forum/topics/how-to-be-a-pushy-patient-want-the-best-care-here-s-how-to-fight-
I know it's easier said than done being assertive with doctors, but if you really don't want to have your wisdom tooth out then that's up to you. I don't think that it's unreasonable to request a CT to make sure before you go through what could be a very painful op, especially as you have young children to look after! I was advised by a dentist years ago to have all 4 wisdom teeth out, which I thought was a bit much, so I got another opinion- that dentist said not, they're all fine!! So I still have them, although I must admit I did wonder for a bit if some of my ES symptoms were down to the teeth, like jaw pain and ear ache.
Thank you very much for that information. My gp is very nice so will be speaking to her about having a scan done, the x-ray definitely shows infection in that tooth and it does keep flaring up so think it is worth getting it out but even the specialist didn’t think it was causing me all my problems. It’s the burnt feeling in my soft palate and throat that is the worst with the jaw and neck pain coming a vote second. Trouble is I can feel a bone of some sort behind the angle of my jaw but no of the specialist push hard enough to feel it.
When you push the bone you can feel, does it make the ES pain worse? That's a pretty good indication that you're on the right track! Ouch, the wisdom tooth sounds painful then! Glad you have a nice GP!
Hey,
My styloid was 2 mm from angle of yaw. Pain was terrible when I was doing full inhale and when trying to put my ear on shoulder.
I have almost all the same exact symptoms. Panoramic x-ray was useless. Fought to get a 3d-CT scan with contrast, which revealed partially calcified styloid ligaments, but the doctors still won't say it's Eagles, think the calcifications don't cause symptoms. I got a recent diagnosis of mild sleep disordered breathing, mild reflux, so I am treating those now, but they have yet to help my jaw/face issues. I really feel for you and hope you get answers or find the right doctor who will listen.
Hi Jo!
I'm a bit late joining your discussion, but I wanted to say that I had many of your symptoms including the feeling of a "burnt mouth". That sensation would usually occur after I exercised & would be only on the upper gums & roof of one side of my mouth. It felt like a severe burn (like the top layers of skin had peeled off though they hadn't). It would last for an hour or so then subside. I could feel one of my styloids in the same place you can feel yours but the other one was growing more straight down & couldn't be felt externally. I agree with everyone else that your symptoms definitely sound like ES, but again, without a CT scan to positively diagnose it, you're kind of stuck guessing.
I hope you are able to get the diagnosis that you need soon so you can proceed with taking the proper steps to feel better!
Several people have had Burning Mouth Syndrome- usually on the tongue I think, but yours could be that. I didn't think of it before as you mentioned your throat hurting. Is your mouth very dry, or have you found any food makes it worse?
Sorry haven’t been on here for a while due to other health problems. The ent did initially treat me for burning mouth syndrome with no improvement and the burning has now changed to a stabbing feeling at the back of my throat and pressure from ear to jaw and pain in neck, the past week has also brought a pressure feeling where my hyoid bone is. I am due to have a ct scan with contrast this week due other on going neck problems and the lady I spoke to in a and e was amazing and really listened and is going to get in touch with someone who knows about eagles to read the scan so fingers crossed.
That's great news Jo. It sounds like you're on the right track to get this resolved. And it's great to have someone listen to you!
hey Jo1 any update on your ct scan w/ contrast?
I have been diagnosed with a large hemangioma on the side of my neck that is interfering with the nerves in that side of my neck I am currently waiting to see a specialist to see what can be done about it as they kept saying that they don’t cause pain until they did an mri and then they realised it was pushing on structures other than just muscle. I really appreciate all the responses from here and it gave me the strength to keep pushing for an answer.
interesting, is the hemangioma visible on the outside of the skin? or can you just feel it in the neck?
No its not visible on the outside but if you push in that place on my neck you can feel it, it was picked up on the mri and then had an ultrasound to see the blood flow of it, they explained it to me to be like an internal mole but it’s made up of blood vessels.