I tried to get an appointment with a local ENT to get a CT scan and was told they don’t treat ES because it’s controversial. Has anyone else heard that?
I think they mean…they don’t know what it is and they do not have any experience with it. So many doctors can’t just say…hmm, “I’ve never heard of that”. And then there are some who I think are simply not motivated or even curious about learning something new so they become dismissive. I googled the city/town/hospital that was in-network for me and Eagle Syndrome in order to find someone with experience, etc. Sorry you experienced that.
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Unfortunately, despite so much research to the contrary, not all doctors know anything about ES, so will be dismissive of it! I guess they can’t keep up with all the research papers that come out… or as seiders says, they don’t want to admit that they don’t know anything about it!
Alot of members have also found that doctors are dismissive of symptoms, don’t believe that ES can cause vascular problems, or try to put you off surgery and say it doesn’t help. Best advice is to read up as much as you can, and print off any research papers which help your case (there’s links in the ES Info in the Newbies Guide section), and take that with you to any future appts.
Try elsewhere, I wouldn’t want someone like that operating on me anyway!
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Forgot to say that there are some figures for success rates for surgery; it is quite high, I think there’s info about it in the ES Info section as well.
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After my surgery my GP confessed that I had ‘taught him something new’ because he had never heard of Eagle’s. I had to really push him to pay attention and write a referral to the surgeon I selected. A local ENT got mad at me when I told her what I needed help with, and my pulmonologist had to look it up on the internet. Yet another ENT said their was no easy fix for it. My surgeon also said it was controversial, and not likely the cause of my vertigo, but he did concur that it might help other symptoms. I had bilateral intraoral surgery last month and I am doing much better. Thanks to this group, I had the tools to persevere until I got help. I think the doctors really don’t know much about it and few are honest enough to admit it.
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I found a research study today; it says in the anstract at the start that they had a sucess rate of 93% of patients having no symptoms after surgery, although it wasn’t a huge number of patients. Here’s a link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2637062/ miht be a good one to take with you!
Catmd- really glad that you’ve had sucessful surgery! Did you have both sides done at once then? If so, how was the recovery? It’s something alot of people ask about, but my surgeon wouldn’t do it.
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I don’t see how it could be controversial but most drs ive talked to about it gave non idea what it is. I shouldn’t say most… i will say all. First ENT knew what it was but didn’t feel comfortable treating it… only 2 ENTs in my state treat it
I have to laugh a bit as I start feeling like ES is a common problem when I’m on this site because of the number of members here. Then I wonder how so many doctors could be ignorant about ES &/or its treatment.
I have to remind myself that this forum represents people all over the world, & in the big picture, I guess our numbers are rather small.
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Hi Jules - I did have both sides done at once, intraorally. The only really bad part was post-op, because the nurses were not prepared for my inability to speak, breath, or swallow. If anyone is anticipating this approach, do it only with a planned overnight hospital stay. They PACU nurse tried to send me home and I had to demand admittance to the hospital. Steroid injections and strong pain killers made that night manageable. After that first night, recovery was not too bad - probably less intense than recovery from a tonsillectomy. Biggest problem for me was that my tongue was huge for several days and really bruised. I drank lots of bone broth and could eat normally in about 3 weeks.
Thanks for the info!
Hi. Im a 56 year old female and have been diagnosed with Eagle Syndrome which was identified on a CT scan for my sinuses a few years ago. I have calcified elongated styloids on both sides. At my first appointment with ENT I was told that all my symptoms were because of Eagles. I was told that they used to operate and remove the ligaments but as they are so close to arteries, they no longer do this. This ENT doctor told me that I’ll feel better now that I know what I have. But I don’t! I have had tinnitus/pressure for many years 24-7 which this doctor says I feel is in my ears but it is coming from behind my ears. My own doctor says I am fixating on this and that he wouldn’t have the operation as it could potentially cause a stroke. A second ENT doctor I saw says the ringing/pressure in my ears is not related to Eagles Syndrome. He would operate if I wanted but he said it’s not to say this would alleviate my symptoms! I have difficulty in getting off to sleep every night because of this. From my experience, Eagle Syndrome is a very grey area and I have had no reassurance that anyone seems so know much if anything about it.
I also have neck and shoulder problems.
So yes, I feel Eagle Syndrome is a very grey area, I know ligaments can become calcified anywhere in our bodies but as with anywhere else, they must be causing recognised symptoms.
There is plenty of research showing common symptoms from ES, & what is causing those symptoms (like pressure on certain nerves), so there is info out there, & it is recognised… unfortunately not by quite a few doctors, there is still much ignorance!
Quite a few doctors won’t operate because the styloid processes or calcified lihaments are too close to arteries- it’s understandable that they perhaps don’t want to take the risk of operating, but there are alot of doctors who are experienced enough to do this. Maybe TJ (moderator) will pipe in with this, & maybe I’m wrong, but if doctors can repair & stent aneurysms in major blood vessels like the aorta, then surely an experienced doctor can remove a bony process near a blood vessel?
The pressure in your ears could well be down to ES, & surgery might well help. Tinnitus as well seems to be common with members, although personally mine hasn’t improved loads, maybe others might have had a different experience? (although the tinnitus wasn’t a symptom that was high on my list to get rid of, fortunately wasn’t as bad as yours).
I agree that it’s strange that you don’t hear of calcified ligaments anywhere else, although bone spurs are well recognised.
Don’t be fobbed off by doctors if you feel that you should have surgery, lots of members have tried quite a few doctors before they’ve found one they’re happy to have do the surgery.
My worst symptom is this loud ringing/ pressure in/behind my ears. I feel
this may be do to with the calcified ligaments as I feel they could be
pressing on surrounding areas. I try to distract myself from it by
listening to relaxing music at bedtime but it’s always there day and night
with not break from it. You live with it and it becomes the ‘norm’ but it’s
not normal.
Thank you Jules for your information.
Ka1 - I don’t know where you live in the UK but there are at least 2 very good ES surgeons in your country. Jules can give you more information on that front. Perhaps getting an appointment or consult with one of them would be helpful for you.
I don’t that surgery is controversial. A number of studies have confirmed that patients with styloid processes longer than 25 mm treated by surgical resection became asymptomatic after resection Patients with styloid processes longer than 25 mm were treated by surgical resection and in 93% of cases became asymptomatic after resection. There were no serious complications. Under 25mm not so much (about 50 - 50) There is a fairly recent new procedure that is amuch simpler technique for styloidectomy with an intraoral approach which can be used in local anesthesia that has similar results.
The main difficulty is that more often than not the symptoms (especially in cases where the styloids are less than 25mm) is the the symptoms are not directly caused by Eagles. The symptoms related to Eagle’s syndrome can be confused with those attributed to a wide variety of facial neuralgias and/or oral, dental and TMJ diseases Proper clinical and radiological examination and sound knowledge of mimicking pathology can help in diagnosing the disease.
Differential diagnosis includes but is not limited to Glossopharyngeal neuralgia, Superior laryngeal neuralgia, Occipital neuralgia, Sphenopalatine neuralgia, Nervus intermedius neuralgia, Cephalalgias migraine, Cervicogenic headache, Oromandibular disorders temporo-mandibular joint disorders, impacted, Unerupted or distorted third molar, Faulty dental prostheses, Sialolithiasis, Tonsillitis, Otitis Mastoiditis, Foreign bodies, Inflammatory and neoplastic processes in the oropharyngeal and esophageal areas to name a few. The Doc and his experience make all the difference in the world.
Because the intraoral approach is “so simple” lots of folks are doing it that prolly shouldn’t be. This is where the controversy comes from. Its pretty easy to look at an image call it Eagles and procede (often times) almost instantaneously with procedure when the issue was never Eagles in the first place.