Eagle Syndrome

Posted by Jackie, Alumna Mentor @travelgirl, Apr 25, 2018

My son was diagnosed with Eagle Syndrome. It took years of him complaining to Dentists and Doctors before it was diagnosed. Finally a Dr referred him too the Cleveland Clinic. They were able to diagnose it, but didn’t have a Dr on staff that could offer any advice. Being that Eagle syndrome is so rare less than 4% percent have this condition and of that 0.16% show symptoms.
We found a couple of Dr’s who have treated the condition. But they claim the surgery is horrible they found it creates more issues. That to hold off as long as a person can.
It is very painful at times for my son. He said right now, he can feel the Styloid pressing on his Hyloid bone.
Does Mayo Clinic have any studies or Dr’s that deal with Eagles Syndrome?

Liked by de9g

I had my VA ENT appointment and the initial response was to dismiss styloid-induced symptoms/ES. But, after the initial ENT doctor consulted with the senior ENT physician, the senior doctor reviewed my CT & MRI images, then palpated my neck, jaw and intra-orally in my mouth, The senior ENT doc then confirmed my suspicion and diagnosed me with ES.
I will be following up with a VA ENT/Head & Neck Surgeon and will be scheduled for surgery soon!

Over 3 years of multiple doctors: ENT's, neurologists, chiropractors, dentists/TMJ specialists, multiple exams, CT/MR/Ultrasound imaging and medicines: gabapentin, prednisone, antibiotics, etc. and thousands of dollars later and I finally feel like the diagnosis is correct!

I am overjoyed & grateful!

Dave

Liked by Lisa Lucier

REPLY
@holemania

I had my VA ENT appointment and the initial response was to dismiss styloid-induced symptoms/ES. But, after the initial ENT doctor consulted with the senior ENT physician, the senior doctor reviewed my CT & MRI images, then palpated my neck, jaw and intra-orally in my mouth, The senior ENT doc then confirmed my suspicion and diagnosed me with ES.
I will be following up with a VA ENT/Head & Neck Surgeon and will be scheduled for surgery soon!

Over 3 years of multiple doctors: ENT's, neurologists, chiropractors, dentists/TMJ specialists, multiple exams, CT/MR/Ultrasound imaging and medicines: gabapentin, prednisone, antibiotics, etc. and thousands of dollars later and I finally feel like the diagnosis is correct!

I am overjoyed & grateful!

Dave

Jump to this post

Finally feeling like your diagnosis is correct must indeed be great, @holemania. When will you be having surgery?

REPLY
@lisalucier

Finally feeling like your diagnosis is correct must indeed be great, @holemania. When will you be having surgery?

Jump to this post

I have consultation with ENT Surgeon scheduled for 1/7/20. Hopefully the surgery can be scheduled shortly thereafter. I'll update later.

REPLY

Hello! I just joined today. I was diagnosed with Eagle's syndrome. Just trying to get more info on this syndrome. I have to have a surgery, and will soon. I seen a couple ENT's before I was diagnosed. 3 mos ago I had the 24 hr flu. After the flu, I always get a sinus infection. So I called my primary dr to get in to get some antibiotics. He gave me a zpac. I took for 3 days, and my symptoms never seem to get better. I had a stuffy nose, my lymph nodes on my right side were swollen, my ears hurt. The right side of my neck hurt under my chin whenever I would swallow. After about 3 weeks, I went to urgent care, because I was not feeling better. All the dr did there was give me different antibiotics. Well those seemed to work, but I had a hard line on the right side of my neck that the dr could not figure out what it was. They told me to follow up with a ENT. So I did, and the dr I seen was not a ent, she was a nurse practioner, and I needed to get in asap, or else to wait for a ent was about 2 mos. So she said it was infection from the flu, just come back in a month. I said ok. Well my right side of neck just kept getting worse and hurting more and more. So I made another appt with a different ENT. He was awesome. He did 5 different types of blood work, a ultrasound, a CT scan with contrast /wo contrast. That is when he told me I have Eagle's syndrome, I have a cyst in my sinus cavity, but it is small right now. So I have to schedule a appt for surgery. I have not yet, cause I just had dental work. So I am waiting on my gum to heal a bit before I do this. So that is where I am, just trying to get more info on it. My dr did tell me that it is very rare and he will do the surgery.

REPLY
@loreeann32

Hello! I just joined today. I was diagnosed with Eagle's syndrome. Just trying to get more info on this syndrome. I have to have a surgery, and will soon. I seen a couple ENT's before I was diagnosed. 3 mos ago I had the 24 hr flu. After the flu, I always get a sinus infection. So I called my primary dr to get in to get some antibiotics. He gave me a zpac. I took for 3 days, and my symptoms never seem to get better. I had a stuffy nose, my lymph nodes on my right side were swollen, my ears hurt. The right side of my neck hurt under my chin whenever I would swallow. After about 3 weeks, I went to urgent care, because I was not feeling better. All the dr did there was give me different antibiotics. Well those seemed to work, but I had a hard line on the right side of my neck that the dr could not figure out what it was. They told me to follow up with a ENT. So I did, and the dr I seen was not a ent, she was a nurse practioner, and I needed to get in asap, or else to wait for a ent was about 2 mos. So she said it was infection from the flu, just come back in a month. I said ok. Well my right side of neck just kept getting worse and hurting more and more. So I made another appt with a different ENT. He was awesome. He did 5 different types of blood work, a ultrasound, a CT scan with contrast /wo contrast. That is when he told me I have Eagle's syndrome, I have a cyst in my sinus cavity, but it is small right now. So I have to schedule a appt for surgery. I have not yet, cause I just had dental work. So I am waiting on my gum to heal a bit before I do this. So that is where I am, just trying to get more info on it. My dr did tell me that it is very rare and he will do the surgery.

Jump to this post

Hi. Mine started with a bad cold and spiraled from there. I suggest going to the website LIVING WITH EAGLE. There is a lot of information there. It will turn up in a Google search. Good luck.

REPLY
@loreeann32

Hello! I just joined today. I was diagnosed with Eagle's syndrome. Just trying to get more info on this syndrome. I have to have a surgery, and will soon. I seen a couple ENT's before I was diagnosed. 3 mos ago I had the 24 hr flu. After the flu, I always get a sinus infection. So I called my primary dr to get in to get some antibiotics. He gave me a zpac. I took for 3 days, and my symptoms never seem to get better. I had a stuffy nose, my lymph nodes on my right side were swollen, my ears hurt. The right side of my neck hurt under my chin whenever I would swallow. After about 3 weeks, I went to urgent care, because I was not feeling better. All the dr did there was give me different antibiotics. Well those seemed to work, but I had a hard line on the right side of my neck that the dr could not figure out what it was. They told me to follow up with a ENT. So I did, and the dr I seen was not a ent, she was a nurse practioner, and I needed to get in asap, or else to wait for a ent was about 2 mos. So she said it was infection from the flu, just come back in a month. I said ok. Well my right side of neck just kept getting worse and hurting more and more. So I made another appt with a different ENT. He was awesome. He did 5 different types of blood work, a ultrasound, a CT scan with contrast /wo contrast. That is when he told me I have Eagle's syndrome, I have a cyst in my sinus cavity, but it is small right now. So I have to schedule a appt for surgery. I have not yet, cause I just had dental work. So I am waiting on my gum to heal a bit before I do this. So that is where I am, just trying to get more info on it. My dr did tell me that it is very rare and he will do the surgery.

Jump to this post

It took doctors two years to figure out I have Eagles syndrome. You need to find a good head neck surgeon who has at least done a few of these surgeries. I was very lucky to find a doctor at UNC Chapel Hill who is trained in Robotic Surgery. I researched and read all I could and everyone who had it said you have to do external surgery not intro-oral. That is because there are few surgeons trained on how to do this surgery with a robot. I had bi-lateral intra- oral surgery on November 11, 2020. I can tell you that compared to all the cases and experiences I read about. I had one of the best outcomes.I am 95% better. With the intra-oral ROBOTICS SURGERY the doctor can see more and be more precise. I had no infection, no nerve damage. etc. If you do the extra- oral they are cutting you through the outside of your brain of neck. The importance I found was using the robot and again very few are trained on this. My surgeon has done a few surgeries on this. He also holds one of the highest honors when other doctors vote on who they would want to do there surgery if they had to have it. Unfortunately there is not a lot of surgeons or enough information out there. I would never do the intra oral personally (and I am not a doctor or any medical training) just speaking from talking with others who have been through it and other head neck surgeons without it being robotics. My styloids were pressing on my arterial artery and I got the wildest headaches I have ever experienced. Like electrical shocks and sometimes like someone was stabbing me in my head. I had a lot of other symptoms but this was the one that I really thought I wasn't going to be here long. I basically had to lie in bed most of the time and not move until they discovered what was wrong and had the surgery. Luckily my surgeon was also a vascular surgeon. I hope you can find a great doctor who can help you and get better soon!

Best of Luck,

Adriene

REPLY

I have been experiencing debilitating symptoms since September 2019. I've finally received a diagnosis of Eagles Syndrome after a dentist appointment with an xray. (After having a CT scan and an MRI which garnered no results) my PCP thinks I'm a hypochondriac and had absolutely no idea about ES. She's already referred me to a neurologist for my symptoms (prior to any diagnosis) but my consult isn't until June 2020. She's now referred me to an ENT but only to our local doctor who it's not highly recommended. I'm searching for a specialist who I can feel confident with.
Any recommendations in Maine?
My quality of life is absolutely awful, I need some relief. Has anyone found anyway to manage Eagles syndrome without surgery? I'm worried about the amount of ibuprofen I'm taking to manage the pain.

REPLY

Hello @kbailey.

I’m sorry to hear about your diagnosis; you are not alone in experiencing the frustration of being dismissed by your doctors, and I'm so glad that you’ve joined us on Connect–welcome!
I hope @sann @zebraclaire97 @johealy31 @abby4paige @linda21 @de9g @brooklyngirl @eaglegirl1 and other fellow members will return to share their experiences and any information that might help you.

What symptoms have you been experiencing, @kbailey? Besides medication, have you tried massage, exercise, or other strategies that target the painful area?

Liked by Lisa Lucier

REPLY
@kbailey

I have been experiencing debilitating symptoms since September 2019. I've finally received a diagnosis of Eagles Syndrome after a dentist appointment with an xray. (After having a CT scan and an MRI which garnered no results) my PCP thinks I'm a hypochondriac and had absolutely no idea about ES. She's already referred me to a neurologist for my symptoms (prior to any diagnosis) but my consult isn't until June 2020. She's now referred me to an ENT but only to our local doctor who it's not highly recommended. I'm searching for a specialist who I can feel confident with.
Any recommendations in Maine?
My quality of life is absolutely awful, I need some relief. Has anyone found anyway to manage Eagles syndrome without surgery? I'm worried about the amount of ibuprofen I'm taking to manage the pain.

Jump to this post

@kbailey I can relate to all of the waiting, it took me a year and a half to finally get my diagnosis and it came from the radiologist that reviewed my CT scan in the ER. This was after a dentist visit with xrays, oral surgeon with xrays and multiple family dr visits. Once I finally received my diagnosis, the ER doc referred me to ent. None of the ENT within the Fairview Hospital system were familiar with Eagles Syndrome and didn't know what to do with me. The Mayo clinic didn't treat it, so I called the U of M. Thank goodness a person that made appointments had remembered hearing of Eagles and made some calls. They directed me to Dr. Ondrey at the U of M (head and neck surgeon). He is the only Dr. in MN that has operated on this to my knowledge. I had to wait over a month to get into him, so I asked the local ENT to help me with something until that appointment. They didn't know what to do, so they started me on Prednisone thinking that reducing the inflammation would at least help, they also gave me muscle relaxers. It lessened a small amount of the symptoms. I would maybe call one of the larger hospital systems and inquire with ENT or Head/Neck surgeon. I wasn't ever pointed in the direction of Neurology. I have ready many posts where people have had to travel out of their state to see specialist. There are a few in Philadelphia and one in California (San Jose I believe – this dr will review your records without having to go there for $500 when I had inquired before finding my surgeon). My case would not have gotten any better without surgery, I basically had a necklace of bone (this is how Dr. Ondrey described it to my non medical husband). My styloids were elongated and the connecting ligaments were completely calcified down to the hyoid bone on both sides). My sugery was on May 10th, 2019. The recovery was a bit tough, but after 3 weeks I was able to go back to work. There were a few nerve issues for the next few months that affected my speech (they had me see a speech therapist that gave me some exercises), but I am 100% now. We are hoping that the right side will not cause any issues so I don't have to do another surgery. The group Bens Friends had a wealth of information and much encouragement for those who have gone through this and are at the point that you are. I am so sorry for your pain and frustration. I hope that you can maybe find a head/neck surgeon that is willing to see you before you can get into the Neurologist. Also, some surgeries are done orally (tonsils are removed if they are still there – my surgeon started doing this procedure, but now only does his surgeries externally. I do have a scar on the side of my neck, but it is well worth being free of symptoms).

Liked by Lisa Lucier

REPLY

@kbailey I looked out on Bens Friends, and I don't see any listed for Main, New Hampshire or Vermont, but did find this for Massachusetts:
I wouldn't let this stop you from searching for someone in your area. There may just not be patients that are aware of Bens Friends site.

•Dr Timothy Anderson, Lahey Clinic 744- 781- 8467 https://physicians.lahey.org/details/1565/timothy-anderson-otolaryngology_ear_nose__throat-burlington 15

•Dr Timothy Osborne, Boston University Medical Center, 617- 638- 4350 https://www.bmc.org/about-us/directory/doctor/timothy-m-osborn-md-dds-facs 13

•Dr Donald Annino, Brigham and Womens, Boston (surgeries on several members) https://physiciandirectory.brighamandwomens.org/details/1975/donald-annino-jr-otolaryngology_ears_nose_and_throat-boston 20

Dr Jalisi, Beth Israel, Boston. Has done a research paper on Eagles, but don’t know about surgery.

REPLY

Hello everyone! I have posted here a couple times. I will update you with my story. I have severely elongated calcified Styloids measuring right 5.6 cm and right 5.5 cm. The right is slightly more pronounced. I was diagnosed with Eagle's Syndrome last year in Oct. 2019. So I have a question. I have been trying to research this disease, and get the right dr to do this surgery. My dr that diagnosed me has never done the surgery before. BUT, his practice has one dr that does. My dr was surprised that there was only one that knew how to do this surgery. So I researched a little bit, but could not find anywhere online where they do this certain procedure. So I bring it to you, and maybe someone knows, at least I hope. So this dr that does these surgeries, does a tonsillectomy, will take my right tonsil out, and cut away that muscle as well, then he will see my styloid. He will FRACTURE it. Dr says since it is severely calcified, it is like a bone, and it does not move, its like a stick. He says that if they break it, it will move freely with my muscles and nerves and ligaments. So, I was just wondering if anyone has ever heard this. Thanks, Lori

REPLY

@loreeann32 My surgeon in MN used to do the styloidectomy intraoral, but no longer does. All of his are now done externally. Both of mine were completely calcified all the way down to the hyoid on both sides. I told him that I felt like it snapped before surgery and after my surgery he told me that it had. I wasn't comfortable with it just staying in there with sharp edges around the nerves and carotid. When he removed it, he took it out in 4 pieces (not sure what the tool was called). When he recommended that I be out of work for 3 weeks, I was a little surprised, but he said "there is allot of important real estate in there" so it is going to take time to heal. I had some nerve issues after that affected my speech a little, but by a few months out, you never would have known I had any issues. I am not going to lie, the recovery wasn't pleasant at times but it was much better than having the pain that I was. My right side is still intact and so far hasn't caused any issues for me. What state are you in? There are lists of surgeons on the Bens Friends site online that may be of help to you. I had my surgery May 10, 2019. Best of luck to you! Also, my dr is a head/neck surgeon, so maybe inquire with an oncology office. There are many head/neck cancers that need surgery in that same area.

Liked by Lisa Lucier

REPLY
@abby4paige

@loreeann32 My surgeon in MN used to do the styloidectomy intraoral, but no longer does. All of his are now done externally. Both of mine were completely calcified all the way down to the hyoid on both sides. I told him that I felt like it snapped before surgery and after my surgery he told me that it had. I wasn't comfortable with it just staying in there with sharp edges around the nerves and carotid. When he removed it, he took it out in 4 pieces (not sure what the tool was called). When he recommended that I be out of work for 3 weeks, I was a little surprised, but he said "there is allot of important real estate in there" so it is going to take time to heal. I had some nerve issues after that affected my speech a little, but by a few months out, you never would have known I had any issues. I am not going to lie, the recovery wasn't pleasant at times but it was much better than having the pain that I was. My right side is still intact and so far hasn't caused any issues for me. What state are you in? There are lists of surgeons on the Bens Friends site online that may be of help to you. I had my surgery May 10, 2019. Best of luck to you! Also, my dr is a head/neck surgeon, so maybe inquire with an oncology office. There are many head/neck cancers that need surgery in that same area.

Jump to this post

Hello Abby, I am from Illinois. I have been looking for the name of that procedure all day! Thank you! My dr is a ENT, and he called me last night to tell me all of this. So I told him I have to think about this for a couple days. I like that fact that it would be floating around and not causing me any pain. But then again, in little pieces? hmmm, not sure about that. I have pain on my right side of my neck, all the way up to my ear, and I get ringing in my ears all the time. My pain comes and goes, but is always there in a way. I also have a nodule next to my thyroid that the dr wants to get a biopsy done. In the ultrasound it showed that it was not quite big enough to do the biopsy, but in 6 mos they wanted me to come back and get a biopsy done. So my dr said that if I go with the surgery, the other dr will do the procedure, and when he is done, he will do the biopsy in my neck while I am still out. How bad was your speech? I know you just said that it will get better. Could you talk at all? Because I talk to customers all the time, and when I come back to work, I will have to do that. Well I guess I will have to write down some more questions to ask. My dr did say that if I do not want the surgeon in his practice to do it, he would not be offended. He would give me some referrals. So I think I will just get that info, and just ask alot of questions. Wow, alot to do! Where do I look for the list of surgeons on the bens friends site? I am new to this website.

REPLY

This is what was on Bens Friends http://www.livingwitheagle.org

Dr. Jason Cundiff, Crystal Lake (does intra-oral and external surgery) http://jasoncundiff.com
Dr. Miloro, University of Illinois, Chicago 312-996-7640 http://hospital.uillinois.edu/find_a_Doctor/Michael_Miloro.thm
Dr. Michiel Bove, Northwestern Medical Group, Chicago 312-695-8182 https://www.feinberg.northwestern.edu/faculty-profiles/az/profile.html?xid=16846
Dr. Urjeet Patel, Norhtwestern Medical Group, Chicago 612-695-8182 https://www.feinberg.northwestern.edu/faculty-profiles/search.html?q=DR+Urgeet+Patel&x=4&y=6

The nerve for my tongue was irritated from surgery so the left side of my tongue was swollen for a few weeks, so I spoke like I had a mild stroke, but they had me see a speech therapist and it helped quite a bit. I too have a job where I talk to people allllll day long, so I was self conscious about it, but everyone said I thought it was worse than it sounded to others. I preferred having it done externally because I figured it's such a tight space and they could probably see all of the important things better from the outside:) I do have a scar, but I don't care…..I have no pain and there are people that are going through much worse than I that lose actual body parts, so I am not going to complain about a scar.

REPLY
@travelgirl

@carolinedoubt Welcome to Connect I see your a new member. Eagles syndrome is very rare. Were you told you had to have surgery? Or was that just an option?
My son is still leaving that out there as an option.

We were told by 2 different dr's to only do the surgery if absolutely necessary. Which means if it is life threatening or blocking your throat from food going down. Then it would to be done.. Cause the surgery can really mess up your face.

We also sought out 2 different DR's in 2 different states that had the most practice with this kind of surgery. One a Dr at Uf Strands Hospital in Gainesville, Fl and the other Dr was in Columbus, Ohio. The Dr in Columbus actually was a Medical Professor who trained other Dr. about Eagle's syndrome.

Surgery should be your very last resort. My son was 28 when he was diagnosed. It took several years to even figure out what he had. It has been 5 yrs. It bothers him on and off.

You really need to think about whether, or not you really need the surgery? Or can it be treated another way? Most DR's have done very few surgeries. So the room for error is high I think? They better really know the facial nerves and muscles cause one wrong cut could be seriously damaging.

This site Living with Eagle's Syndrome lists some Dr's that have treated patients. I told my son we would need to see them all on the list to figure out which one we could trust. Case the two we met both said to make the surgery the last resort for treatment.

This Dr list is 3 years old on this site.
https://www.livingwitheagle.org/t/4-10-15-updated-doctor-lists/774/41
If I can help you in any other way please feel free to contact me. Maybe we both can follow each others symptoms to help ourselves?

I wish you the best.
Jackie

Jump to this post

I would like to know the name of the doctor in Columbus, Ohio that you spoke of. I live in Columbus and I am trying find a Doctor who knows a lot about Eagle Syndrome.

Liked by Lisa Lucier

REPLY
Please login or register to post a reply.