Hi, these were taken in September 22 after being admitted to hospital with suspected stroke (I collapsed outside the hospital and was wheeled in for brain scans) - it was life changing and since then the NHS has not helped. I went to a TCM doctor who diagnosed calcified ligaments around my neck. They cause seizures, balance issues, sore throat, watery eyes, tinnitus, problems undershooting the mark when reaching for things, excess saliva, jaw pain, trouble swallowing, tics, electric shock sensations. Nights are terrible, my sense of time is off although I feel like I’m running out of time. The last two months have been pretty bad and it stabs into my right side. I hear popping and clicking.
I’ll have to write a book about it all as I’m a journalist and I want to help anyone afflicted by this.
Your x-ray isn’t very clear in the area where the styloid would be so I’m uncertain if what I’ve marked in the image below is your styloid, but it’s in that general area. Do you have nay more images?
What I’ve annotated in your image could be your styloid/calcified stylohyoid ligament & a separate calcified section of your stylohyoid ligament that’s attached to your hyoid bone beneath your jaw. If what I’ve marked as your styloid is accurate, your styloid is quite elongated. Some doctors refer to an elongated styloid as a calcified stylohyoid ligament.
Thanks for looking into this Isaiah - I know the images aren’t the best. Going to book an appointment with Dr Osborne for a consultation - I’ll see what other images I have.
If you have a CT venogram that would be your gold standard scan. My husband had a consultation with Dr. Osborne and his office wanted the CTV imaging prior to the appointment. He was very nice and knowledgeable (and expensive). Depending on the type of Eagles you have (classic or vascular) then you might have other (and more affordable) options closer to you, there are a few options in Europe/Turkey. Your symptoms make it sound like you have the classic version but it’s hard to rule out a jugular vein compression without the CTV.
A consult with Dr. Osborne is a great place to start the conversation. Even though JC didn’t go with him for the surgery, the consult was an invaluable step forward in getting the diagnosis and creating a plan for treatment. Dr. Osborne validated the diagnosis, made JC feel seen (for the first time) and did a great job explaining why having “two pencils” stuck in his neck was diminishing quality of life.
If your styloid is compressing your vagus nerve is could be creating the anxiety you feel at night. There are a lot of resources on here for how to hold your head, and see if positional training can help alleviate some of those symptoms. Pretty much anything chin down could cause compression to looking forward/slightly up may help. That’s overly simplistic, but it’s a starting point.
I’m so sorry that you’re feeling that rotten, & that the NHS isn’t helping, sadly UK members are all experiencing this… Mr Axon at Addenbrooks is very experienced with ES but I agree with @Isaiah_40_31 that your hyoid bone processes (or calcified stylo-hyoid ligaments from the hyoid end) look pretty long & unusually shaped, I don’t think Mr Axon would do surgery for that…whoever you have a consultation with I would ask about that as well.
Let us know how you get on with Dr Osborne, @Val7426 has given you good info about him but had surgery with Dr Aghayev, & I believe one of our UK members, @Warrick is consulting with him…
Dr. Kamran Aghayev - https://kamranaghayev.com
Thank you so much, your help has been invaluable - you’ve all made me feel heard.
Any tips/meds to manage the symptoms meanwhile - should or shouldn’ts?
Just learning about the Eagle…
From your description of your symptoms, it sounds like you’re having neuralgia/ nerve pain; there are medications which can help with this like Amitriptyline, Gabapentin, Carbamazepine. They can take a few weeks to build up in your system but are worth a try, your GP should be able to prescribe one. Sleeping propped up can be helpful, with lots of pillows or a wedge pillow. Ice packs can help on your neck, or otherwise heat. Some members have tried topical lignocaine or patches, we’ve had some discussions, I’m not sure if we can get these in the UK…
There’s info in the Newbies Guide Section: ES Information- Treatment: Pain Relief - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Some members have also had steroids/ lignocaine injections into the area, although these don’t always work, and some have tried botox injections or dry needling, but you’d need to research practitioners. Physio can sometimes help too, but again, it would have to be with someone who understands ES as they can do more harm than good…
Thanks Jules, I think you mentioned something on positioning - the doctor who diagnosed my calcium said to strengthen my posture with ballet which is helping. I used to go bouldering but I will give that a miss for now! I have breathlessness from low-level activities and problems swallowing, and speech issues, hoarse voice, sometimes can’t talk at all. It’s so isolating as it’s affected so many areas of my life.
Perhaps a decent dentist could fix me up with some botox around the jaw, I could do with that!
I feel like I have a permanent cold, and my vision is disturbing. I used to run around a lot but I’m cautious to move too much. It affects the right side more. I’ve filled a request out with Dr Aghayev too, and trying to organise my files to post here and send to Osborne. Thanks again for your help! I feel slightly less crazy coming here. x
@London6 - It’s very difficult to see the styloids from the front when the lower jaw is present. Do you have any side views you can post?
The symptoms you listed can all be attributed to the cranial nerves that can be irritated by ES so I believe you’re on the right track. Getting in contact w/ Dr. Aghayev is a good step as getting more than one opinion is a good idea.
I asked the pharmacist here in uk about local anaesthetic patches and got nowhere do ended up buying diclofenac gel for the occipital area. I’ve now resorted to mixing a bit of anbesol liquid with CBD oil on to a cotton bud to try and numb the ear canal. I don’t advocate others doing it but I’m desperate as others are! X
Hi, so from those scans Dr Osborne says it’s not Eagle’s, although these are 2.5 yrs old and he wants recent images. It was an acupuncturist who said the ligaments around my neck have calcified. I saw a neurologist a couple of years ago who dismissed my symptoms, and I’ve had thousands of tiny seizures and convulsions, difficulty swallowing, excess saliva or really dry mouth, pain and stiffness turning my head to the right, cracking and popping in my neck, something that resembled a stroke, vision issues, spasms and it’s kind of unmanageable. So maybe the new scans will show something but maybe I’m back to square one!
@London6 - When you get your new imaging, try converting the scan inages to 3D using either radiantdicomviewer.com for PCs or Bee Dicom Viewer app for Macs. After you delete or cover any personal information on the 3D images, you can post a few here (if you need help deleting person info, you can send the images to me in a PM & I’ll do it for you), & we can give you our non-medical but reasonably experienced opinions which may be helpful for you.
It really sounds like you have internal carotid artery compression or irritation being caused by something so it’s vital to get that figured out.
