First off I am very happy to have found this group! A little about myself: I found out about 10 years ago that I have Eagle’s syndrome from my dentist that did an xray. I am a 37 year old female from Alabama. When I first found out there was very little information available. For the last few years my symptoms range from (all on the left side): jaw pain, tooth pain, ear aches, pain in the back part of my head, neck pain, throat pain, & for the last month my heart is skipping beats. I had my first real Drs appt about it yesterday and have been referred to an ENT specialist next Tuesday. I had a car wreck when I was 18 that caused a concussion and my tonsils out at 13. Should I ask the ent for a 3d scan? Should I see a neurologist too? Who is the most appropriate Dr for this and since I am close to UAB in Birmingham, AL (there are lots of specialists of all kinds there) should I go there if I don’t find answers from the Ent here? I am also experiencing very limited head rotation - I can’t even look up and to the left anymore, only slowly to the left. My dentist told me 10 years ago that I had calcification of the styloid process and can reach into my mouth and feel the bone on the left side since my tonsils are out. (Which my Dr said to never do again) Any information you guys could provide would be helpful. Thank you in advance!
I am a new member also...welcome! Just wanted to say hi.
Wow, sounds like you have a sharp dentist. It is my understanding that palpating the bone in your throat is not dangerous; however, my own experience and the literature support that doing so does set off a nasty array of symptoms.
The literature supports that a 3D CT scan is the diagnostic modality of choice (contrast is not necessary) and in your shoes, I would want one. The physician's request should specifically request an accurate measurement of both styloid processes - you can ask for this if he doesn't suggest it. Once done, get a CD of the images from the radiology dept. as well as copies of the radiologist's report. You just ask for them, this is an expensive test and you need to have the results in hand. Keep them for your file and for use in seeking consultation if need be. Ask your ENT for a copy of his chart notes as well.
My advice to you is to also do your internet research of medical articles and learn the risk and benefits of the two approaches to surgical removal; there is an internal and an external approach. Many ENTs will favor the internal since it seems simpler, however, there are some who don't believe it is a safe or effective approach at all and will only do external. There are some ES patients who have had the procedure performed with an internal approach and have had to have it redone externally because bone was left behind. These are just a few of the issues. Do your research about the risks and benefits of both before agreeing to a surgery.
Also, based on comments you made, I would encourage you to also do your research to fully understand the difference between "Classic" Eagles and "Vascular" Eagles. Don't expect that the doctor will absolutely know; they don't see a lot of this. Best of luck to you. Ask questions!!
Thank you very much! This is great advice and information. I really appreciate your response
You fit the profile for this group for sure. Most doctors we saw only wanted a CT scan of the neck. They didn't need contrast and they didn't need 3D (but we did get 3D based on other's recommendations). We had been to countless doctors and I will tell you that the right doctor is an ENT, but not all ENTs will treat this. We saw many before we found the right kind of ENT. The best advice about what doctor to use, is first, find one from the spreadsheet on this site. these are doctors with experience and knowledge. Second, if they do not validate your symptoms or try to tell you that you are crazy or that you need a back up plan or to try more drugs first, then move on quickly and find another ENT from the list. When you find the one who listens, who is willing to do the surgery, and who has experience, then you are in the right place. Good luck and God bless.
Thank you! I ended up in the er this weekend because the heart palpitations were coming so strong. I got to the er, they hooked me up to the ekg and saw it was beating early every other minute and sometimes several per minute. They blamed my one cup of coffee in the morning. No one there had heard of eagle’s syndrome, wanted to look at my carotid artery, nothing. It was the biggest joke of a visit to a dr I ever had. No matter how I explained it or asked them to check my other symptoms, they refused and told me to just cut out the caffeine and take a beta blocker and be discharged. I was terrified. I felt like I was having a mini stroke and they blamed caffeine. They even gave me pain meds even though they didn’t look at the ekg or check anything else out. I wasn’t even in enough pain for meds, just having heart arrhythmias and weakness on my left side and they still didn’t care and said to just go to the ent Tuesday and follow up with a cardiologist if it continued. I was so let down. Luckily the beta blocker they put in my iv has stopped the palpitations. I go to the ent tomorrow and am hoping to get some answers. The Dr I am seeing isn’t on the list but I did research the list yesterday and if this one doesn’t work out I will head to the one in Atlanta since he’s only 3 hours away.
Keep your spirts up and you will get where you need to be. It is unfortunate that these doctors are not trained about EAgle's.
Thank you. It really is unfortunate. If I were a dr and a patient told me they had something I wasn’t up to par on, I would at least look it up. Today’s medical system floors me.
I agree Heather. But it is rare and so they aren't trained and we can't expect them to understand what they haven't learned. Your Eagles is more serious and it sounds like there is obviously contact with the arteries and the bone causing your heart issues so you need help as soon as you can get it. You will find the right doctor...
Heather, good luck with the ENT today. Please keep your spirits up. Just know you are not alone. My husband has been dealing with sometime for the last 6 years. We have been to Dr. after Dr and not one of them have help. We were told last week by a Dr that he does not have ES, but if he don't have ES then what in the heck is wrong with him. It is a daily struggle but just know once again Heather you are not alone.
Thanks guys. I really appreciate the support. I do have to say the pain is mild compared to some of the stories I have read on this forum and case studies I have seen online. I think of all the roller coasters I have been on and the work I do (painting and furniture restoration) & feel pretty lucky. RJM, I am sorry for your husband’s issues and lack of help. Having unanswered questions to your pain and medical issues are extremely frustrating. I go to the ent tomorrow and will post an update. Thank you again and hopefully we will all get the answers we need soon enough
Heather, I had a similar ER visit. My heart felt like it was pounding out of my chest, I had horrible headaches and weakness. They decided I was dehydrated, even though I drink a LOT of water, and sent me home. I had to go out of state to find an ENT who would treat me for Eagles. It turned out my right styloid was compressing my carotid artery and jugular vein. My symptoms disappeared immediately after surgery.
Heidemt, that’s terrible. Much easier to brush it off as something else and let it be someone else’s problem I am so glad you had surgery and symptoms disappeared!
Just saw the ent. He was very nice and felt the bone in my throat and seemed to confirm eagle’s syndrome and has sent me to have a cervical xray which I am currently waiting on right now. He’s concerned because it is causing pain in my neck and shoulder and wants to find out if I have more calcification elsewhere. He mentioned sending me to a neurologist surgeon to have it removed as well but we will discuss that after the cervical spine xray. Waiting
Heather B, I am from Alabama also, Hoping help is just around the corner for you.
Thank you RJM. I hope help is around the corner for your husband too! What part of Alabama?
Already got the results back. The ent said My cervical xray looks good but he wants to do a styloidectomy and remove in internally. He was going to send me to a neurologist surgeon but wants to do it himself. He said he has done the surgery before but not often but acted as though it wasn’t a big deal. He wants to go in internally and “get as much as possible after separating nerves from bone and break the bone off.” I’m terrified.
You can check with one of the other doctors before making a decision. Hope you can wait just a little while longer to make sure you have a good feeling about doing surgery. It is the only cure, but always best to find a comfort level first.
Heather B, I am from Arab! I pray that you will make the right decision about your surgery, I know how terrifying it can be. About seven years ago I had to have TMJ surgery, they had to break my lower jaw bones and put metal plate in, and I was terrified. I am trying to find a Dr. close by to take my husband too. What Dr. did you use? Praying for peace and comfort but most of all pain free.
Heather B - all surgery is terrifying but think about the peace you will have afterwards! I would do it for my son again in a heartbeat!