Two weeks ago my dentist diagnosed me with ES after looking at my panoramic x rays…I spoke with my primary care doc, and he gave me a referral for an ENT. I regret not thinking to have my x rays sent to her office, but having her walk in and have the first thing she says is “there’s no way you have Eagle Syndrome and dentists don’t know what they’re talking about”… and that headaches aren’t a symptom of ES, really threw me for a loop.
I’m only 29, but have a long history of ear infections (adenoids removed and tubes in my ears 3 times). I’ve struggled with headaches, neck pain and tension, tinnitus, “throat fullness”, among other symptoms. She put her finger in my throat to see if she could feel my styloid, and while she said she was unable to, I am left with pain radiating down my neck. I’m not stranger to having to self advocate to doctors that won’t listen (Lyme disease and PMDD), but the overwhelming distress of being dismissed and not listened to by doctors never gets any easier.
I am having my x rays from the dentist sent to my primary care doc, and hopefully we can find someone to hear me out–I live in Durham NC and am right by both UNC and Duke, and from what I’ve read on this site, many folks have had great success with several doctors between the two.
That is discouraging! I’m sorry your first experience was a bad one and I hope you find a doctor who works with you instead of dismissing your symptoms. Hopefully you get some relief. In the meantime, cough/throat drops and tea with honey helped my throat symptoms before my eagles was diagnosed. I also found having a Tylenol regimen made the headache more manageable than taking it only when the pain became unbearable. Also I’ve found that midol works as well as a migraine medicine when my headache gets to that level.
I’m so glad you’re not giving up! Sadly, there are many doctors who don’t understand ES. I’m sorry you had to go through that! The good news is there are incredible doctors out there that WILL help you! Try looking at the list on this site and hopefully one will be near you. Don’t lose hope! You will get better!
I’m so sorry for the way the ENT you saw treated you. She is obviously ignorant of the multitudinous symptoms that ES can cause. The styloids cannot always be felt in the throat when it’s palpated but the fact you have additional pain after her probing around is a good indicator that your styloid(s) is/are elongated.
You’ve made a good observation about where to find doctors who are familiar with ES & can help you. Dr. Hackman at UNC has done ES surgery for a number of our members with mostly good outcomes. Here is the link to the US Doctors’ List we maintain: https://forum.livingwitheagle.org/t/us-doctors-familiar-with-es-current-list/4752
I hope you find a more knowledgeable doctor soon! Good for you for self-advocating but I am sorry you’ve got other serious health challenges that have required that process as well.
A shame you weren’t listened to, what a waste of time! The styloids can’t always be felt, it depends on the angle they’re growing…Good that you can get the X-rays sent & then they can be forwarded on to someone with more experience, and hopefully the next appt will be alot better for you! Let us know who you decide to be referred to & how you get on!
I’m so sorry. But we’ve all been there. There are a lot more ENT’s who dismiss Eagle than who understand it. I was basically dismissed by five – FIVE – different ENT’s before I found Dr. Hepworth. You are lucky – you found this site, so you can skip the other four and just go straight to somebody recommended here who knows what Eagle is and how to treat it.
Thanks everyone—it’s just nice to be heard by those that get it. My primary care doc was appalled when I told him, and just put in a referral for Dr. Hackman! And I know now to have my X-rays sent ASAP!
so sorry to hear that. I had a similar thing happen to me. The second ENT I saw could use common sense and see that on the xray it was plain as could be. Just look on the recommendation list on here for a good doctor near you.
I have been dealing with ES for about 16 years now. I know all about the rejection of doctors to just right you off. as if they weren’t the ones to discover the issue, you couldn’t have it. I also have Lyme disease witch is just two of the hardest health issues to have diagnosed. the lyme was ease once discovering armin labs in Germany. but the eagles is still hard, I have a one neurologist see me, when explains my symptoms to him, he stated I think you have eagles. sent me for imagine, but also mentioned the likeliness of it being caught by our radiologists is next to non because they do not know what they are looking at or for. and never herd from the doctor again. the pain in my neck, the lump under my ear. the non stop popping in my heard the throat and chest pain. do not go away or get any better. its becoming very difficult to deal with. the dizziness, fainting spells, nausea, gastroparises is so bad I can only have a bowl movement ever 5 to 7 days now, the longer things go untreated the more health issues I deal with. it really seems as those this will slowly take my life, as it cause so many issues with good and digestion. the rest of my body can’t handle it any longer
I’m so sorry for all you’ve suffered. It sounds like you’ve been disrespected by many in the medical profession who didn’t take your symptoms seriously.
The symptoms you’ve mentioned have all been noted w/ ES & most of them often resolve or minimize after the styloids/calcified stylohyoid ligaments are removed. If you can’t get someone in Canada to see you, & can afford to travel to the US for surgery, there are a number of good, competent surgeons here.
I have not heard of anyone having liver dysfunction as a result of ES, but I suppose if the gastrointestinal symptoms (caused by the vagus nerve) are bad enough for long enough, other organs could be affected. Have you had any testing done to check on the health of your liver? Your dizziness & fainting spells sound like they could be related to vascular compression possibly caused by your elongated styloids.
Have you tried contacting an ENT cancer specialist, if there is one in your area. In the US the most common medical specialty that is familiar w/ ES is an ENT cancer specialist/surgeon. Other doctors who do ES surgery are Head & Neck surgeons, Maxillofacial surgeons, & Neurosurgeons though there are fewer from these specialties on our doctors list.
I hope you’re able to get help soon. Lyme Disease is definitely bad enough w/o adding ES to the mix. Again, I’m sorry you’ve been struggling for so many years.
thank you very much, I appreciate your kind words. I maintain being strong and trying to be positive, at this time I want to get the best possible imagine done for seeing what’s going on with the styloid. im more than sure that the diameter of it is very enlarged. with added calcification happening has I have issues with other places in my body concentrating calcium. do you know where I could get the answers as to the best type of imagine to get done?
The best image to see the styloids & stylohyoid ligaments (if calcified) is a CT scan of the area from your skull base to your hyoid bone. If you want to check for vascular compression then. CT scan with contrast will help show that but your head must be in the position that makes your symptoms worsen i.e. looking up or down, left or right, etc. Often when vascular compression is present it doesn’t show up w/ the head in a neutral position.
As Isaiah says, a CT is the best imaging to get a diagnosis- not sure of the system in Canada, but can your GP/ PCP refer you for that? If they specify that the CT should cover the skull base & down to the hyoid bone, & asks for it to be evaluated for ES (i.e. looking at the length, width & angle of the styloid processes, and also if there’s any calcifications of the stylo-hyoid ligaments) then hopefully a diagnosis can be made for you. What imaging did the Neuro send you for? So strange that you didn’t hear any more; your PCP/ GP should have chased that up! Unfortunately you do have to be a bit pushy & persist with doctoes, I’m sure you’ve had to do that with the Lymes disease too!
I think some of our members have mentioned bowel issues, including slow bowel. Issues with calcifications in other areas of the body are quite common too- metabolic disorders are one of the causes of ES.
I hope that you can get some answers & help soon, thinking of you…
he sent me for a CT im sure. with contrast, but I my head was perfectly straight and told you can not move at all, so that could explain why I never heard back as it did show I had any issues with vascular blockage.
Whether or not you have an issue w/ vascular compression, if your styloids are long & causing other problems, removing them is what will allow your body to heal. Finding a doctor who understands that is the challenge. Also letting the doctor know you only have the vascular type symptoms when your head is in a certain position & that you need a CT scan w/ your head in that position for an accurate diagnosis of vascular compression might help. I know it may be difficult for you to get re-tested so soon, but it’s worth asking.
I agree w/ Jules that it’s not right for your doctor to never have contacted you with your test results. You need to ask for a copy of both the CT scan & the written radiology report. Having those in hand will be useful for you going forward.