Seeking guidance

Hello - I am seeking some guidance. I believe I have eagles syndrome and it is causing me grief right now. I am a 25 year old male and I live in Ontario, Canada. The reason I believe I have eagles syndrome is I can feel a hard bone like mass at the back of my throat with my finger, but I also have a lot of other symptoms too. I occasionally get dizzy and nauseous , I believe that may be from the bone pushing on my gag reflex? It feels like it flairs up sometimes and I feel pressure in my ear which makes it harder to hear out of my left ear, also I can feel pressure behind my eye. It was causing me headaches every day for about 2 weeks but that has sort of settled down. I am now getting numb feeling in the left side of my face and it's really freaking me out, I've had that for 4 days on and off but it's sort of staying around today and it kind of hurts, like my face has razor burn all over sort of.

I've been to my family doctor, he sent me to an ENT. The ENT scoped me and said I had acid reflux, so I have been on mylan-pantoprazole for reflux, one daily. Also I have low thyroid levels but I have had that for maybe 4 years now and I take synthroid for that.

I have not mentioned eagles syndrome to either doctor because I wanted to let them do their thing, but this face numbness/pain is really bothering me. I've been very anxious for the last few weeks whereas I am normally a relaxed happy-go-lucky guy, I know everyone around me sees a difference.

What should I do? I made an appointment to see my family doctor again today but the appointment won't be until May 3rd which is a ways away. I can call my ENT and possibly make a sooner appointment with him, I was going to go ahead and do that tomorrow. I just feel really lost and I've been pretty depressed about it. Thank you for reading my story and any advice/direction is greatly appreciated!

Before I had surgery, I was starting to get numbness in my face. I think that the styloid was perhaps affecting the Trigeminal Nerve, which has branches all over the face. ( You can look on Google images to see where the nerve has branches). I get pain along all the main branch areas of that nerve; the surgery has stopped all the numbness, although I still get some aching.

There are medications for nerve pain, if it is a nerve affected. (There's info in the ES Info section). Things like Amitriptyline, Lyrica, Neurontin can be very effective for nerve pain in lower doses, although sometimes it can take a bit of juggling to find the right medication/ dose. So this is something you could ask your doctor about at your next appt., and perhaps ask for a referral to a neurologist. If it gets really painful, and you can't get an emergency appt., perhaps you could go to the ER. The Ben's Friends Trigeminal Neuralgia site is quite informative too- you can have a look at the site without having to join.

A lot of members have been diagnosed with reflux before finding out they have ES. I personally wouldn't hold back waiting for them to work it out, as you could have a long wait, as it's so are! Best advice is to read up as much as you can, perhaps print off info/ research papers which support the symptoms you have etc., and take that with you to your next appt. The best scan to diagnose ES is a CT scan, and if you can get referred for that it will help you get a diagnosis. A CT with contrast is even better, as that will show if there is any compression of the blood vessels. The pain in your eye could be again the Trigeminal nerve, or it could be pain from compression of the carotid artery. So it would be good to push for that, and perhaps take a look at the doctors list to see if there's anyone with ES experience you could ask to be referred to.

Good luck!

I agree with what Jules said. It sure sounds like you could have Eagles. It's very, very common for us to be diagnosed with reflux before they figure out Eagles. If I were you, I think I would call and make an appointment with the ENT. I would bring information about Eagles to show him if he seems receptive, and ask for a CT scan with contrast. Make sure the doctor tells the radiologist to evaluate for elongated styloids because they often don't know to look for it. Then I'd ask about the medications that Jules mentioned to get you through in the meantime.

It looks like the replies to this thread dissipeared, including mine, but I have an update to my situation.

I had an appointment with my family doctor after I had seen my ENT, I decided to keep it so I could talk to him about the numbness in my face and talk to him about eagles syndrome. He actually listened to me and took me very seriously! I printed out some articles about eagles and he asked me my symptoms. He then ordered a soft tissue neck xray for me which he said is one of the methods listed, and I went and got that xray done the day after. Today is the day after I got the xray and his office phoned me with the results - I am told that I do have an elongated styloid process. So there you go.

They sent the xray and results back over to my ENT, this is the only part I’m a little iffy about. He didn’t really listen to me before but hopefully he’ll take me seriously now that I have actual results. My appointment with him is in 2 months from now and I have yet to get the MRI, I am going to go ahead and do it.

Personally I’ve been able to remain pretty calm about the whole thing, I get ocasional facial pain and numbness and throat/ear pain but it’s usually very dull. So I am cautiously optimistic!

Hi ace47,
That is great that your family doctor listened to you, and now you at least know what you’re dealing with, instead of wondering about it.
I am hoping that your next appointment goes well with your ENT and that he will take you seriously and listen to you. If not, my suggestion would be to ask to be referred to another ENT.
Good luck!

Good news that you have it in writing, so to speak! It would be a good idea if you can get a copy of the report and images to keep yourself, then at least if the ENT still is sceptical then you have copies to send to other doctors. Quite a few members have been able to get theirs reviewed that way rather than making a trip etc.

Yes, I agree with Jules. Get copies of your scan as well as the report and be ready to send them to other doctors. I think you’re in Canada - can you just send them to the doctors that have Eagles experience? This is just my two cents - but why go back to the ENT who doesn’t know that much about Eagles and who just dismissed you? Unless you have to in order to get a referral to someone else or something like that.

I agree… Find a ENT, gollosylpharengal, surgeon who has preformed the surgery before. Get a list of ENTs call their office and ask to leave a message for his medical assistant. She is responsible for facilitating your question of, have you preformed surgery for Eagles Syndrome? If so make apt. Also, your primary can give you a depressant like Cymbalta which also helps with trine gal pain. Good luck!