Jules thank you for telling me about prof leo stassen surgeon listed on here. Ive been to see him today. Im happy but confused. Hes very willing to do the surgery and went through my scan with me. He seemed very relaxed about it. He wants to do both sides at the same time!! He said he’ ll take out 2-3 millimetres of both ligaments i know thats not enough so ill ask him again about that. Hes done 5 surgeries. The only problem i have is he said the bone behind my tonsil wasnt the styloid and it clearly is he couldnt really feel it and its something that doesnt show on the scan. Its very obvious to me. On the opposite side in the soft pallet i have pain radiating to my ear and he said he wont get in at that and where my pain is is just radiating from different areas. He told me there is no guarantees with the surgery that my pain will be gone. I know this but im worried that he doesnt understand where my pain is coming from and hes just willing to take some of the ligaments off lower down to the hyoid bone. I am happy ive found someone to help me but what symptoms i have doesnt seem to match up to what he wants to do. Should i trust he knows what hes doing? Hes the only one in ireland. If that bone is left behind my tonsil what is the point?
That is a bit worrying- I can’t remember, did you get your styloids measured, are they elongated as well, or is it just that your ligaments are calcified? If the styloids are elongated as well, then you could go through surgery only to find that your symptoms aren’t much improved! 2-3 mms doesn’t sound a lot, I agree, to go through surgery for just that! Also a lot of doctors don’t do both sides at once because of the risks of swelling, so I would be a bit worried about having that done.
As for the bone you can feel, I don’t know, I would’ve thought he would know whether it was an elongated styloid. But the pain in the soft palate could be pain in the general area from irritation, although I would’ve thought it would be more likely to be from a styloid than from the ligament near the hyoid? Just my opinion, we’re not doctors…
You have to be confident in your surgeon if you’re thinking about having surgery, but where else you go I’m not sure. Could you think about going to the UK? Otherwise explore options from other surgeons- see if there’s any otolaryngologists/ skull base surgeons, or vascular surgeons who work in the neck area in any of the bigger hospitals?
No there was no mention of styloid measurements on the scan. Ive called to ask for my scan to be converted to 3d to see if that will show the styloid in behind my tonsil and they said theyve never heard of a 3d scan! That all scans are in 3d but mine looks like plain xray form. I dont have the software to convert it myself. Im banging my head off a wall here. The secretary said shed get the radiographer to call me back about it so ill wait to see what he says ( if he calls) if my scan was read properly i wouldnt be having to convince anyone.
Hi can anyone show me where the info is on changing my scan into 3d?
If you look in the Newbies Guide section, there’s info about how to get diagnosed, with info about the best scan- under the CT scan section there’s links to a couple of different discussions where members shared the programmes they used. I’m a technophobe so have never tried it, but others have worked it well!
Here’s a link to the Newbies Guide page: ES Information: How Is ES Diagnosed
Praying for you. Keep fighting
Wadams did this massage completely resolve your eagle syndrom? Ive looked it up and this muscle can be responsible for all the same symptoms of eagle syndrome. Talk about confusing! Has anyone else looked into this?
Wadams are you cured from this massage? I really dont want to get surgery if theres another way.
Once i got the kinks out of the muscle most of my symptoms were better. Less ocipital pain less headaches neck not as stiff and painful. But the biggest mprovement was in the dizziness. It really cant hurt to try it. Best of luck
Getting ready for my surgery. It seems to have taken so long to get to this point but I have been extremely sick back and forth to er ect. I am now extremely dizzy like 24/7 with blood pressure fluctuations low and high and with the feeling of it being low. This is so hard to deal with…I am nervous for the surgery because of all the heart and BP issues that I have had. I still don’t have pain bUT have noticed that I get it if I lay in a certain position only and it’s under the left side of jaw. .I still continue to have the clicking and popping on the left side as well. I am.really praying that all this truly stems from the SP and the calcification of the ligaments. This had been torture and a long wait for me. I know I could gone to another surgeon but i feel Dr. Chettri is worth the wait. Anyways until then i feel like I walk on air and it hits me sometimes in the center of chest… I am.having the surgery on the outside of neck so I hope it goes smooth…
Hope that it goes well- will be praying for good results for you. & hope that you have a quick recovery… it could take a little while for swelling to go down, so you may not see instant results. Let us know how you get on! 
Hi Donihue - I am newly potentially diagnosed after 19 years of symptoms similar to yours. They have gotten worse over time and sometimes they have abruptly become much worse. My initial symptoms were persistent vertigo and headaches. I have acquired many more symptoms over the years. Many, many specialists (including a neuro-ophthalmologist at Tufts who scolded me for having “too many tests” and telling me to increase valium, etc…I left there in tears actually and I am pretty tough), primary care, and so many alternative treatments later, I finally went to an orthodontist for a consult re: my jaw as my next rule-out. She did a panoramic xray which picked it up, by accident really. I have read that very often dentists are the ones that pick it up as this type of xray tends to show it more clearly. So…I might suggest that you go to your dentist and ask him/her to look for it.
I am not sure the ES is responsible for all of my symptoms, but I am looking for a surgeon now and am looking forward to ruling it out via surgery (which is crazy sounding, but that’s just how miserable I have felt).
Also…someone posted that their dr thought their symptoms were not ES but rather “tight muscles in neck”? I have had a lot of work done on my neck over the years as it was so tight. I recently have gone to an acupuncturist who was finally able to release my neck and shoulder enough so that my dizziness has improved. SO…I think, that the tight neck is likely a symptom of the ES and I while there are plenty of good drs out there, in my experience, there are plenty of drs out there that can become very dismissive when we bring them our own research, etc. SO…keep pushing for your own health.
Stephanie
I have the same symptoms bro. Mainly the balance issue.Pain in jaw area while opening the mouth, dizziness, throat pain etc etc etc. It is ES and please don’t browse anymore for symptoms for it will always show something much worse. Trust me , I have been there and its hell.Knowing that you have ES itself is a big achievement and just take care of that alone. Please don’t worry as you have found the root cause already.
Good advice, Raghav. Sometimes people get pre-occupied w/ too many little symptoms & lose sight of the original diagnosis that should be the focus until it’s resolved.
Hi, Don’t know if you are still on this group or will get this message but just wondering if you had the surgery with Leo Stassen? I’m in France and looking far and wide for someone I can communicate with and a Dr. that speaks English. Thanks
jteleia,
I know it’s not as close for you, but you should consider Dr. Axon in Great Britain. He has helped MANY of our members who live in GB & Europe. I think of him as the Dr. Hepworth (USA) of the UK/Europe. From what I understand, he does see private pay patients & sooner than if you’re trying to go through a particular medical insurance system.
I’m so sorry you have the complication of sick dogs when you’re not feeling well yourself. That is very difficult, indeed. I will pray for a caregiver solution for the dogs so you can take care of yourself. 
If you interested in seeing Mr Axon, he does private work through Spire Health
Mr Patrick Axon - ENT Surgeon (Ear, Nose & Throat) | Ear, Nose & Throat Surgery | Spire Cambridge Lea Hospital (spirehealthcare.com)
You could message @anon22211586 as he’s from Ireland, but struggling to get treatment through the Irish healthcare system. Here’s a link to a research paper authored by doctors in Ireland that TheDude suggested:
SULTAN (2021, Ireland): Refractory neck pain due to Eagle syndrome - General - Living with Eagle
Thanks but the UK is out of the question as there’s no hope of reimbursement, I haven’t the money and it’s in GBP which is ever more expensive. Will keep looking.
Thanks for the article reference. Will email the doctor on it.
I’m sorry you don’t have more options & especially that there isn’t some sort of system for reimbursement when there is no doctor in your own country to help you. I hope you’re able to find someone you can afford so you can move forward. 