I have a possible eagle syndrome diagnosis and it’s either that or a nerve issue or apparently both. They want me to go get an MRI of my brain but I can’t stop coughing. I have no idea how I’m going to get a successful MRI with this cough. I’m hoping that someone can help me with one of my symptoms. I can’t seem to find anybody who’s ever had it. I have dead skin Or some kind of grit in my mouth or at least it feels that way. It is almost like the back of my throat is disintegrating. It’s so depressing and stressful not to be able to stop coughing. It’s only on one side of my throat. It feels like the spot is on my left side very far back near my throat opening.
The vagus nerve is often irritated by ES & would most likely be the culprit i.e. cause of your cough. One thing you could try to quiet the vagus nerve is an injection into your neck of lidocaine mixed w/ cortisone . These injections are usually given w/ ultrasound guidance to help place the medication very specifically. The lidocaine could potentially help numb the nerve & the cortisone would help reduce inflammation in the area which might reduce the irritation to the vagus nerve. These things together could help your cough stop. Additionally, if they do help with your cough, you’ll have a better idea of what’s causing it i.e. irritation to your vagus nerve. In turn, if your cough subsides, you can get a CT of your neck between your hyoid bone & skull base so your styloid processes & stylohyoid ligaments can be assessed for elongation/calcification. An MRI is not a good diagnostic tool for ES because the soft tissues are all visible & can keep the styloid & stylohyoid ligament from being fully visible.
I’m not a doctor, but I’m guessing a very chronic cough like yours is probably taking a toll on the soft tissues in your throat & mouth & may be the cause of the dry skin/grit you’re feeling there. Because they are constantly being abraided by your cough w/o a chance to heal, they’re in a sort of constant raw condition which would cause the skin to slough off & leave you w/ that awful feeling. You could try drinking extra water/herb tea (go light on sugar as it causes inflammation) to help keep your mouth & throat very hydrated. There are also various dry mouth sprays & lozenges that might help if you used them.
The type of doctor who usually diagnoses & treats Eagle Syndrome is an ENT cancer specialist. Dr. DeLacure in NYC is an ENT who is experienced w/ ES. It might be worth making an appointment to see him both about your cough & the possibility of ES.
As Isaiah suggested, I’d drink some herbal tea - my favorite is mint or fruit - with honey. I also tend to suck on cough drops when my throat is feeling rough.
Hi Cyn - Thank you for sharing your story. I am so sorry you are going through this. I have had a chronic cough for 13 years. It was originally diagnosed as a neurogenic cough after they ruled out everything else they could think of. Almost 4 years ago, I also developed other symptoms that were weird - lightheadedness to the point of almost passing out, pressure in my head, & motion issues when I bent over or put my head in a certain position. This past August I was referred to a new doctor for my migraines & symptoms. As she was taking my history, she saw that I have had a chronic cough for 13 years. She put two & two together & suspected Eagle Syndrome. She did a CTV of my head & neck & confirmed the Jugular variant of Eagle Syndrome & found that my styloids were severely compressing my jugular veins on both sides of my neck. She told me that there was a possible cure for my cough & also my migraines & other symptoms. (I also have traditional migraines that I’ve had for 37 years.) She felt that my Eagle Syndrome was the cause of all of it. I can’t tell you how many doctors I have gone to for my cough & then for my new symptoms that started 4 years ago. And all of the tests that I’ve had! AND doctors telling me that I am making it up. To hear that there was a name to this & also that other people had it, was truly a miracle & finally hope. I found a good doctor in Minnesota where I live - Dr. Omlie who will be doing my surgery on Jan. 20.
As far as your cough, you are not alone! I cough almost constantly. It’s really embarrassing when I am in public & people think I am sick with COVID. It has gotten really bad lately. I am always telling people that I am not sick, but I have a chronic cough. Years ago, when they sent me to a speech therapist for my cough, I told them that taking Luden’s cough drops had helped. The doctor told me to keep doing it if it worked. That has been my only relief. Luden’s are a mild cough drop that really is like a lubricant for your throat. I also always have water with me in case I have a coughing attack. It is interesting to hear what Isaiah said about the constant raw condition of your throat. That definitely makes sense. It feels like I have something in my throat all the time that irritates it, so it makes me cough.
When I have had to have tests done, over the years where I have to stay still, especially, the MRI’s I have asked for a valium to help calm me. That has helped me. I also put a cough drop in right before I go in & then take it out before the procedure. It seems to work so that it has soothed my throat so I am not having a coughing attack. I did that when I had the recent CTV of my neck. I also explain to the person doing the procedure that I have a chronic cough & they are really understanding & try to get me through it quick.
I agree with Isaiah, that a CTV of your neck is the best imaging to confirm ES. I’ve had several MRI’s over the last 4 years & none of them showed ES. It could also have been that they weren’t looking for it, so I don’t know.
Don’t give up. You are making progress & you have a good support group here. Keep advocating for yourself & let them know your coughing issue. You got this!
Thank you all. Dr. Cognetti at Jefferson confirmed my diagnosis. He has 2 days a month dedicated to Eagle’s patients. One office one surgical, so he does a ton of them. Really liked him. Surgery on 3/5.
You can actually see the bone trying to poke through back by my uvula. My symptoms are different than most. I have a ton of grit in my mouth … skin cells I think from where the bone is rubbing through the skin. Also, when I get sick, I cough for months and months. Then there is the feeling of having a bone stuck in my throat… cause there is one.
Big decision I need to make is whether to go through the mouth or the neck. It’s right at the surface in the mouth, but need to be sure the doctor can get enough of it that way.
So happy I found this site. I found my doctor through it. I have been suffering for a good decade and am over the moon that I finally have someone who is certain that it’s Eagle’s. Anyone living near Phillly… he’s the guy.
So glad to read that you’ve finally been diagnosed & that you like Dr. Cognetti so much. He has a good reputation & has helped many people on our forum. He typically does external surgery which we feel overall is a better surgery because it gives better access to the styloids & nerves, vascular tissues, muscles & other soft tissues can be visualized so as to keep them safer during surgery. Nerves are also monitored to help keep from irritating them too much. There is a lower post op infection rate w/ external surgery as well. FYI, Dr. Cognetti typically leaves a little less than an inch of styloid in place rather than cutting it back to the skull base.
Except for the mouth grit, your symptoms are fairly consistent w/ those of many of our other members. Your situation w/ the styloid nearly poking through into your throat sounds AWFUL! I’m so glad your surgery is next week. Getting that nasty thing out of your neck will help you so much!!
What great news! I am so glad you got a confirmation for your diagnosis. Do you have a scan or something that you feel comfortable sharing? That would be very interesting to see how long your styloid is & the position.
As far as external or internal, Isaiah makes some good points. Besides those, I think purely from a recovery standpoint after having my own external surgery, I think it would be harder to deal with an incision in the throat/mouth. Immediately after my surgery for the first several days, I was unable to swallow. I didn’t like that feeling. Now, I just have some minimal First Bite Syndrome when I eat certain foods & I have to deal with pain & numbness in my neck. I think having something done in my throat would be a whole new level of issues & pain tolerance. But that is just my thoughts. It sounds like your doctor normally does the external. Just imagine not having your pain issues & coughing minimized or gone. That would be awesome! So happy you are on this new path towards healing.
Had the surgery yesterday. I had the choice of internal or external bc my bone was right there at my throat. I chose external… seemed the more tried and tried method. No complications ( yet knock knock). I hurt. Can’t chew at all and can barely open my mouth far enough to get a spoon in… and have a wicked headache from the pain meds, which I have stopped other than Tylenol.
All that being said. I feel a difference and am so excited I did it. It helped having confidence in my doctor.
I was one of Dr. Cognetti’s 3 Eagle’s patients that day, which is about average. He does them once a month, so 35-40 a year. I doubt there is a doctor in the world that does more. If you have Eagle’s and can get to Philly/ Jefferson, it’s worth the travel to have a doctor with experience… too many facial nerves etc at risk.
That is great news, @Cyn! So glad you were able to have the surgery & your doctor was so experienced. I remember those first days after my surgery. Applesauce, broth, yogurt, protein shakes, & crushing my pills. But it didn’t last too long & gradually I was able to tolerate soft foods. Oh, and a lot of icing! What things are you able to swallow?
You said you feel a difference. In what ways?
What a great post op report! Ice will be your best friend now & keeping your head elevated to 30º when sleeping or resting will help w/ your inflammation. I’m sorry your Rx pain med was problematic & hope that Tylenol helps you keep on top of your pain. Bear in mind that days 3-5 post op are when the swelling will be the worst & potentially the pain. Keep your ice handy & meds on board during those days especially.
A stiff jaw & sore throat are very common post op problems but naturelover gave you some good food tips.
We are very thankful to have Dr. Cognetti on our Doctors’ List. He’s helped many of our members. We do have other very experienced surgeons on there, too, Dr. Samji in CA & Dr. Milligan in AZ who have both done several hundred ES surgeries. It’s good that there are a variety of location options for our members who can/need to travel for surgery. We hope, one day, our list contains at least one doctor in each state who is familiar w/ ES & does ES surgery.
Rest, lean on your family &/or friends for help this week & maybe next, & you’ll be well on the road to healing.