Hi there. My name is Morgan. I am 24 and was just recently diagnosed with Eagle Syndrome by a GI doctor at Mayo Clinic.
My story:
One night in July of 2016 i randomly felt like my throat was closing and immediately went to the nearest ER. The doctor tested me for Strep Throat which was negative and then proceeded to tell me i was probably having an allergic reaction to something. I hadn’t eaten or taken any medications out of the ordinary that night, so i wasn’t convinced it was an allergic reaction. I went home still feeling the same. I woke up the next morning feeling the exact same way. The feeling began to feel like something was stuck in my throat, constantly. I also could not swallow well anymore. At the time, i was 18 and still seeing my pediatrician. I made an appointment with him a couple days later and he referred me to an ENT. The ENT did a laryngoscopy and said i could “possibly” have silent reflux. He prescribed me Prilosec, which i took for the suggested time and it did not relieve my symptoms of globus and dysphasia. He then prescribed a stronger medication which did not help either so i stopped taking it. I will not go into too much more detail on the every other doctor I’ve seen, but there have been many and I’ve had many tests done. Other doctors include (not in order): new primary doctor, 2 more ENTs, 2 speech pathologists, chiropractor (not a doctor), ER APRN, allergist, and 3 gastroenterologists (including the one at Mayo Clinic that just diagnosed me). Studies/procedures include: 8 laryngoscopies, endoscopy, 2 barium swallow studies, esophageal manometry, vocal cord scope, xray, neck ultrasound, bloodwork, and recently a CT scan at Mayo Clinic which found my elongated styloid. I have not yet met with a doctor at Mayo Clinic to go over my results/how long my styloid are. My appointment is April 7 to do so. They will probably want to try medication for it, which i have heard isn’t very helpful. I understand most people with ES get the surgery.
I have reviewed the list of doctors provided on this forum and researched some of them. If i do get the surgery, would any of you mind recommending one that you had great results/alleviation of symptoms with? I am 24 and do not want to feel this way any longer so i want the surgery, but i do not want to deal with any potential risks. I am young so i really want to make sure i choose the right surgeon and type of surgery.
Also, does anyone on here experience my symptoms? My main ones are constant globus sensation, dysphasia, recent ear pain on and off. I do not remember what a normal throat and swallowing sensation feels like.
Thank you for reading this and to anyone that provides input and recommendations.
Hi Morgan,
Welcome! You’re in a great place for answers. Off the bat, be sure to check out the “newbies” section. You’ll find a wealth of info along with a great list compiled of ES experienced doctors. I believe FL has a couple good docs that may be of help for you. This list of doctors are ones who folks have had good success with. Just keep in mind, being a rare condition may also mean you might need to travel to see that experienced doctor.
I’ve seen the same long and painful path as you…and many others here. And I’ll tell you, this forum has been my saving grace! So many kind folks who will do their best to share knowledge & experience (although none are medical professionals).
Read up, learn all you can and especially tune in to self-advocacy. Look at some of the pics posted…find peace knowing surgery is the best way to get rid of the discomfort/pain for good. Get educated here on intra-oral vs transcervical surgeries and know that all questions are welcome
I had my ES surgeries done by Dr. Samji in California in 2014 & 2015. I had bilateral ES. I’ve had excellent results from my surgeries. There are several doctors in FL who are experienced ES surgeons, however, if you don’t find any of them are a fit for you, I can recommend Dr. Nuss in Baton Rouge, LA, or Dr. Hackman in Chapel Hill, NC. You can click on the magnifying glass icon to get a search window up & type in any doctors name on our list to see posts made about our members’ experiences w/ a given doctor. I think that will provide you with good information.
I’m sure others will share their experiences as well.
Hi Morgan, & welcome!
The symptoms that you describe are the most common ES ones, and usually get resolved with surgery. (I was a bit odd in that I never had the sensation of something in my throat or swallowing issues, I had ear, face & neck pain) Medications only mask the symptoms, as you’ve obvs read, surgery is the only ‘cure’. Some doctors will do a steroid/ lidocaine injection into the tonsillar area, sometimes guided by ultrasound, which can help, although not always for long- they might suggest trying this, which could help until you find the right surgeon. It’s strange that the Mayo clinic do diagnose ES- which as you’ve found can be a real job getting!- but don’t do the surgery.
You can search the past discussions for mentions of any of the Florida doctors, if you’ve not already tried that, here’s links to mentions of Dr Jeffrey Scott Magnuson & Dr Fernandez Worried about my mom - General - Living with Eagle Vocal chord dysfunction - Symptoms and Treatments - Living with Eagle Help with 3D Slicer Images that I created - General - Living with Eagle Surgery Date Set Dr. Bunnell - General - Living with Eagle
You could try messaging the members who mention these doctors directly to find out more about them, it’s great that you want to be prepared!
Welcome Morgan. You have fortunately found the right place for answers on ES!
Like almost everyone on the forum has found, getting the diagnosis is the most difficult part but once you finally have that - then finding the right surgeon is the next step (and also not so easy) but the list that has been compiled here is super helpful.
I chose Dr. Fernandes at UF Health in Jacksonville and have been happy with the results. I still feel like my swallow is a bit “sluggish” on the side (left) where my styloid was removed but it’s not a problem that I ever notice unless I really think about it and I am SO happy that I had the surgery.
There is a lot of extremely helpful and supportive information to read here and everyone is very quick to reply when you have questions. That was a tremendous boost for me when I was first diagnosed.
I will be happy to answer any questions that you might have whenever I can.
Thank you all so much for your help, tips, sharing your stories/doctors and all other info you provided me. I really appreciate it, and it’s a great feeling to finally have found people that can relate to me. I am glad so many people on this forum have been cured. I will definitely post on this forum consistently as i go through this process. I will take as much advice and information as possible. Thank you again🙂
I live in Florida also and had the exact same symptoms as you. I also had a sore burning throat in addition. Like you, I went through several doctors including two gastro doctors- one in Clearwater,FL and one at Cleveland Clinic in Weston, FL. I finally found an ENT in Largo, FL who sent me to have a CT scan with contrast and voila, I was diagnosed with Eagle Syndrome. I researched head and neck doctors in FL, NC and a few other states and decided to go with Dr Anthony Bunnell at UF Health (Shands) in Jacksonville, FL. I was extremely happy with the doctor and the surgery outcome and am thrilled to be rid of my sore throat and feeling that something was stuck and my swallowing issue. Dr Bunnell had seen two other Eagle Syndrome patients the same day as me and he has done many Eagle surgeries. Good luck to you and I hope you find some relief soon,
Thank you so much for this info. It’s so relieving to hear of someone with a very similar story to mine. I actually been to doctors in Clearwater as well. I’m glad you found relief! I’ll definitely look into Dr. Bunnell.
