I have been suffering from nerve pain, sore throat with mass in right tonsil, headaches, ear pain, jaw clicking/pain, neck pain and fatigue over the past 3 years. I had surgery on my jaw in April 2019 to release and clean the joint and an injection of steroids. This gave me 3 months relief but then all the symptoms returned. My ENT Doctor then performed a Tonsillectomy on me 10 days ago together with a panendoscopy. After the op, he came and told me that the tonsils were, as thought, very different in size and the right one had a mass (awaiting biopsy results). He also diagnosed Eagle Syndrome and said he would see me in clinic in 4 weeks to discuss Anaesthetic Treatment for pain management.
Obviously after reading topics on this site it seems to me that removal would be the best option??? Would you agree??
Yes, Kate, styloidectomy is the best & really only cure for ES symptoms because it’s the styloid process &/or calcified stylohyoid ligaments that tangle w/ some of the cranial nerves & cause the pain & other symptoms you’re experiencing. Without removing the styloids &/or calcified stylohyoid ligaments, there can be no permanent relief. The styloids will continue to elongate &/or the ligaments to calcify as long as they are in place in your neck. The longer/more calcified everything gets, the worse the symptoms can become.
Most doctors do not understand the causes of ES symptoms, but it all goes down to irritated cranial nerves, & potentially, vascular compression. The cranial nerves when irritated can create a vast array of crazy symptoms that don’t add up to anything in particular or to incorrect diagnoses. I have found that even most of the research articles don’t spell out the causes of the symptoms only that surgery has made a positive difference for most people.
You can find links to research papers in the Newbies Guide section here. Finding papers that describe your symptoms & their eradication after a styloidectomy & taking copies of them to your doctor at your next appointment may help convince him that ES surgery is what you need next.
We have a list of doctors familiar with ES in the Doctors Info section. Lots of doctors are unfamiliar with ES, & can be unwilling to do the surgery, so it might be an idea to have someone in mind to be referred to if your ENT is unwilling or not confident. You could always have another steroid injection while you think about surgery (& have to negotiate NHS waiting times!) Mr Axon at Addenbrooks in Cambridge is the most experienced surgeon treating ES that we know of, but there are others if that’s too far for you to travel to. If of course you decide that you want surgery, there are risks, but as you’ve read & as Isaiah says, it is the only cure.
After much reading, that is exactly what I thought, thank you for your advice. I will see what my ENT doctor suggests at the next appointment then take it from there. Thanks 
Just thought I would give an update of my meeting with ENT - as I had previously had mri and not ct scan the styloid hasn’t been seen via x-ray. He has arranged for a ct to be done to see what the situation is? Although, I am awaiting CSF leak test first, as I leak from my right nostril and if this comes back positive will need a slightly different ct scan. When he removed my tonsils he could feel my styloid on the right but not on the left. He is very experienced in neck surgery but hasn’t performed a styloidectomy. However he is happy to do it extra orally and I have to say with his experience in this area i feel happy for him to do it. He does know the surgeon recommended to me by this forum and he said he will make contact with him. He, like many other medical professionals, is not convinced about the symptoms ES gives he said he is 50/50 but I guess because he has never done the surgery he hasn’t seen the results - I’m hoping to change is opinion! I am, at last, recovery from the tonsillectomy (4 weeks post op) but as predicted being 48 and having this op has taken its toll on me! I still have right sided ear, throat, neck pain. My jaw seems to have got worse again and when I turn my head to the right I get a shaking sensation which is very strange, do others get this?? Sleeping is the hardest, as I can’t seem to get comfortable around my neck area. I just want to say thank you to everyone sharing there experiences and advice on here, it has helped me so much, not just in giving information but feeling like someone understands xxxx
Hi Kate,
I’m glad you’re finally feeling somewhat recovered from your tonsillectomy. I had that done at age 4 & still remember how I felt immediately post op. I imagine I was back to running around after the first week which is the benefit of being young when I had it done.
As far as your neck pain goes, some of that is likely coming from the elongated styloid process & won’t go away until the styloid is shortened/removed. ES symptoms are often worsened by head position, & it sounds like you’re noticing that yourself. Try to avoid the positions that aggravate symptoms as much as possible. Though I haven’t heard of a shaking sensation as an ES symptom, I suspect it could be. Turning your head is likely impinging nerves & the body response to that is what you feel. Sleeping w/ your head elevated may help your neck some & getting a U or V-shaped neck pillow to help support your neck might be useful, too. When you have ES surgery, you will for sure want a wedge pillow to keep your head elevated when you sleep for several weeks post op to help reduce swelling.
As far as your surgeon & many other surgeons go, they just don’t seem to understand the “mechanics” of ES. An elongated styloid &/or calcified stylohyoid ligament often irritate cranial nerves that run through that area of the neck. The symptoms we experience are mostly caused by irritation of those nerves & can range widely from gastrointestinal to heart/blood pressure to throat/neck/face/ear/skull pain, etc. (That list is really the tip of the iceberg as far as symptoms go). The cranial nerves affected most often are the facial, trigeminal, glossopharyngeal, hypoglossal, accessory & vagus nerves. If you Google these & look at the path each takes through the body, it will help explain your symptoms. Additionally, if there is vascular compression - usually either the internal carotid artery or jugular vein but can be both - then there is another set of scary & painful symptoms that occur. Not everyone has vascular compression but it is common among ES sufferers.
With the info I’ve given you above, you may be able to help educate your doctor about ES symptoms & help him understand why they’re so diverse & painful.
May the medical process move along efficiently for you. CSF leaks are 
so I hope you’re diagnosed quickly if you have one & are able to get it repaired soon.
We’re here for you all along your journey. 
Sorry that it’s been a difficult recovery, & you still have the CSF leak to deal with as well as possible ES surgery too…good that you’re confident in your doctor & that he’s happy to take advice. There have been several members who’ve had CSF leaks; it’s possible that styloids pressing on veins could raise the pressure inside the brain (Intracranial Hypertension) , & that may cause a leak, but obviously this needs looking into- bear in mind that ES could be a cause though- a CT with contrast can show if there’s vascular involvement.
I agree with Isaiah about the pillows- I found the only way I could get a bit comfy at night was to sleep propped up with a wedge pillow, & also with a v shaped pillow on top- that took the pressure off the sides of the neck which helped.
Keep healing 
Thank you I will look into these pillow recommendations