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?

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@travelgirl

@sann @jchristophersen @clara01 @linda21 @lioness @mommyg33 @jealink @keetee @abby4paige @debdeb12 @de9g @theeaglehasland @alcorreia0123 @empy @brooklyngirl @melb777

I want to thank you all for coming to the this site and sharing all your heartfelt stories.
I have had a busy last few months with my move and work. so I have not had a chance to comment.

I started this feed for Son, and others who was diagnosed with Eagle's Syndrome. I love the fact that so many of you are all helping each other. Your stories are all truly heart wrenching. There is nothing worse than being in pain and Dr's not certain as to what the cause or how to treat you. I feel it is scary to just have them guessing or looking at us like we are crazy. That is exactly how my Son felt for 10 yrs till he was diagnosed.

My son has not gone through any treatments. He has done every natural treatment he can find. Because the few Dr's he saw scared him off of surgery. Told him to hold off as long as he can.

Now what he has done may not work for everyone. So you will still need to consult with your DR's. He has gone on a complete health food eating kick. Limiting any milk products and meats from his diet. He keeps himself very slim. He even started practicing yoga. He feels when he gains weight, he notices this aggravates his eagles syndrome. I know he needs another CT scan to check on the Styloids , and compare to his last set. He has not done that yet, Hoping he does that soon! This way I can give you all an update.

I saw some of you posted a couple of other support groups. https://www.livingwitheagle.org/c/bens-friends and https://www.livingwitheagle.org/. I believe they are both linked together.There is a link on that site to a list of Dr's that people have gone too.

I honestly do hope, you all see at least a few Dr's, to get some good second and third opinions on treatments, My Son saw 3 Dr's. One being at Cleveland Clinic which has been a few years ago now. Cleveland Clinic, at the time did not have a Dr on staff that treated Eagles Syndrome.

I noticed a post by someone, that they now do offer treatment. That is wonderful to know thank you so much for sharing.

My Son saw a Dr. at UF Health Stands Medical in Gainsville and another Dr in Dayton Ohio.
I am praying you all feel some relief soon.
Blessing you all.
Jackie

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I can appreciate all that you have said, but…
I have had stomach issues for too many years and I have learned that a good diet, exercise, plenty of sleep and an otherwise healthy lifestyle helped. All of that did not help the constant poking throat pain, the burning tongue pain, choking on food, difficulty swallowing, etc until I had the styloid removed. (I did not attribute my stomach issues to ES, though some say it might have been.) I am 9 weeks post op and dealing with scar tissue pain but I am glad that the left side is free. I still have the issues on the right and I will want the surgery to take care of this. The remaining styloid is 5.5 cm and literally feels like a stick in my throat that doesn't belong causing all of the issues I've mentioned. How did it get to be 5.5 cms and is it still growing? If it is still growing then more issues can ensue, in which case I would want it out sooner then later. The only way to get rid of the symptoms is to have it removed.

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@brooklyngirl

I can appreciate all that you have said, but…
I have had stomach issues for too many years and I have learned that a good diet, exercise, plenty of sleep and an otherwise healthy lifestyle helped. All of that did not help the constant poking throat pain, the burning tongue pain, choking on food, difficulty swallowing, etc until I had the styloid removed. (I did not attribute my stomach issues to ES, though some say it might have been.) I am 9 weeks post op and dealing with scar tissue pain but I am glad that the left side is free. I still have the issues on the right and I will want the surgery to take care of this. The remaining styloid is 5.5 cm and literally feels like a stick in my throat that doesn't belong causing all of the issues I've mentioned. How did it get to be 5.5 cms and is it still growing? If it is still growing then more issues can ensue, in which case I would want it out sooner then later. The only way to get rid of the symptoms is to have it removed.

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I am glad you are feeling a little better. May I ask who your surgeon was? Thank you

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@brooklyngirl

I can appreciate all that you have said, but…
I have had stomach issues for too many years and I have learned that a good diet, exercise, plenty of sleep and an otherwise healthy lifestyle helped. All of that did not help the constant poking throat pain, the burning tongue pain, choking on food, difficulty swallowing, etc until I had the styloid removed. (I did not attribute my stomach issues to ES, though some say it might have been.) I am 9 weeks post op and dealing with scar tissue pain but I am glad that the left side is free. I still have the issues on the right and I will want the surgery to take care of this. The remaining styloid is 5.5 cm and literally feels like a stick in my throat that doesn't belong causing all of the issues I've mentioned. How did it get to be 5.5 cms and is it still growing? If it is still growing then more issues can ensue, in which case I would want it out sooner then later. The only way to get rid of the symptoms is to have it removed.

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@brooklyngirl That is wonderful the surgery is a success. You Eagles Syndrome must of been very advanced? He is not that advanced yet. He isn't having the nonstop pain. I believe his pain comes and goes.
People with Eagles Syndrome I do know need to keep getting checked cause the styloid can block your throat or worse rupture a blood vessel.
Please keep everyone posted on how are feeling.. Can you get some kind of therapy for the scare tissue? I don't know at all? Have you asked the DR. about that?

Jackie

Liked by Lisa Lucier

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@alcorreia0123

That sounds like me. I also have eagles syndrome, but I was also recently diagnosed with psuedo tumor cerebri. Which was the cause for my pressure feeling when I got my headaches. It was also the reason why it seemed the more I moved around the worse it got. The psuedo tumor is also the same reason my heart rate always ran a little high. I was always 110-105 resting. I am down to 95 resting on average now since I was started on diamox. I haven't had a headache since the diamox either. Even with as long as my ES styloids are. I still feel my styloids in there poking, making my ears hurt. I think sometimes when you have the styloids you can have other things wrong and sometimes the symptoms overlap. I don't know a whole lot about the VA, but I do know that it sounds like you aren't being cared for the way you should. I had to go to another state to find answers because no one in my state knew what eagles syndrome even was without having to do a Google search. I wish you the best. Keep looking for answers and never settle for second best!

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Hi there – can you please share how you were diagnosed with pseudo tumor cerebri? Did you have any pulsating head pressure or dizziness with your headaches? I do have ES too but have been experiencing pulsating headaches when moving from sitting to standing or walking up stairs/hill, moving. Also some dizziness. The ENT is saying these are not ES-related. I do not want to do the ES surgery if it can be avoided. Thx!

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@brooklyngirl

I can appreciate all that you have said, but…
I have had stomach issues for too many years and I have learned that a good diet, exercise, plenty of sleep and an otherwise healthy lifestyle helped. All of that did not help the constant poking throat pain, the burning tongue pain, choking on food, difficulty swallowing, etc until I had the styloid removed. (I did not attribute my stomach issues to ES, though some say it might have been.) I am 9 weeks post op and dealing with scar tissue pain but I am glad that the left side is free. I still have the issues on the right and I will want the surgery to take care of this. The remaining styloid is 5.5 cm and literally feels like a stick in my throat that doesn't belong causing all of the issues I've mentioned. How did it get to be 5.5 cms and is it still growing? If it is still growing then more issues can ensue, in which case I would want it out sooner then later. The only way to get rid of the symptoms is to have it removed.

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I am not sure my pain is like others have posted. Maybe I just didn't read all of them. I am now 73 years of age. When I was in my early twenties when I would brush my teeth the left side of my throat would hurt, no bad but ache when he shouldn't be. Later my right side did the same. I could feel the bones poking me in my throat but didn't have a clue what it meant. I went to an EMT doctor and told him my symptoms a few years later. He looked at my throat and said it was my tonsils and they needed to come out. I was thirty when I had them out. It didn't help, just like I felt it wouldn't, but I'm not a doctor. Once I healed from having them out I knew it was not any better and that wasn't the problem. A few years later, I was feeling bad and running a low grade fever, let work and went to see a MD and told him my symptoms and he sent me to an oral surgeon. He ex-rayed my mouth and called his assistant in and really excited. He told me I had ES, which I had never heard of. He said I needed surgery and I said no. I could stand the discomfort and pain it wasn't so bad that I felt like I wanted surgery. He said that one day I would be begging for surgery. Fast forward December 29,2018. Approximately 40 years later. I have a high pain tolerance due to my different health problems but this is nerve pain and it is really bad. From the end of Dec. until sometime in June, I would hurt really bad everyday. I thought I was having cluster headaches because I have twice before, once in 2000 and once in 2006. Both of those episodes lasted about 6 weeks and I would have them at the same time everyday. It is horrible pain, they are called the suicide headaches. When this started I though it was another episodes of those headaches because they can come in cycles every six years. To get to the point they were not. The pain is the same kind but not as severe but they last longer. I went to a neurologist and he did an MRI just to check if it was being caused by something other than cluster headaches. They weren't. They finally stopped but now they have started back each day for the last three days. I couldn't figure it out and I didn't even mention ES to my neurologist because I wasn't associating it with this nerve pain. I knew the pain was some different because it is face, behind my ear and my neck. It is bad as well. It dawned on me to look ES up again because when I read about it there wasn't that much information on it. That is what it is but I don't want to have it done at my age. A person can't live like this because your quality of life is horrible and you never know when it will start. You fear going anywhere because you can't function while it is hurting. I just pray that they will stop. My heart goes out to anyone who is having this type of nerve pain. I am going to trust in my Lord and Savior Jesus Christ to give me the strength I need and to heal this pain.

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@paulaturner

I am not sure my pain is like others have posted. Maybe I just didn't read all of them. I am now 73 years of age. When I was in my early twenties when I would brush my teeth the left side of my throat would hurt, no bad but ache when he shouldn't be. Later my right side did the same. I could feel the bones poking me in my throat but didn't have a clue what it meant. I went to an EMT doctor and told him my symptoms a few years later. He looked at my throat and said it was my tonsils and they needed to come out. I was thirty when I had them out. It didn't help, just like I felt it wouldn't, but I'm not a doctor. Once I healed from having them out I knew it was not any better and that wasn't the problem. A few years later, I was feeling bad and running a low grade fever, let work and went to see a MD and told him my symptoms and he sent me to an oral surgeon. He ex-rayed my mouth and called his assistant in and really excited. He told me I had ES, which I had never heard of. He said I needed surgery and I said no. I could stand the discomfort and pain it wasn't so bad that I felt like I wanted surgery. He said that one day I would be begging for surgery. Fast forward December 29,2018. Approximately 40 years later. I have a high pain tolerance due to my different health problems but this is nerve pain and it is really bad. From the end of Dec. until sometime in June, I would hurt really bad everyday. I thought I was having cluster headaches because I have twice before, once in 2000 and once in 2006. Both of those episodes lasted about 6 weeks and I would have them at the same time everyday. It is horrible pain, they are called the suicide headaches. When this started I though it was another episodes of those headaches because they can come in cycles every six years. To get to the point they were not. The pain is the same kind but not as severe but they last longer. I went to a neurologist and he did an MRI just to check if it was being caused by something other than cluster headaches. They weren't. They finally stopped but now they have started back each day for the last three days. I couldn't figure it out and I didn't even mention ES to my neurologist because I wasn't associating it with this nerve pain. I knew the pain was some different because it is face, behind my ear and my neck. It is bad as well. It dawned on me to look ES up again because when I read about it there wasn't that much information on it. That is what it is but I don't want to have it done at my age. A person can't live like this because your quality of life is horrible and you never know when it will start. You fear going anywhere because you can't function while it is hurting. I just pray that they will stop. My heart goes out to anyone who is having this type of nerve pain. I am going to trust in my Lord and Savior Jesus Christ to give me the strength I need and to heal this pain.

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Hi, @paulaturner – I wanted to add my welcome to Mayo Clinic Connect. Sounds like you have experienced some horrific pain due to Eagle Syndrome.

So, at this point, are you giving thought to having the surgery, or is that what you indicated you didn't want to do at this point?

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@hoping

Be encouraged!! I’m hoping it will work out for you. I had a bilateral styliodectomy January 7. I’m post operative 2 weeks and doing just fine. I had tons of swelling in my neck and face that slowly subsided. I took 2 weeks off work but the doctor said 3 weeks recovery period is the best. I still can not to no lifting or have any vigorous activity. Because my tonsils were removed I followed that post op with some add ones from the doctor. My surgery was done through the tonsill cavity not the neck. I key for me was that all my medications needed to be liquid because of the swelling. It was really bad that even water if I didn’t drink slowly it went up my nose. The great part is my symptoms is eagle Syndrome are all but gone. I feel like a new person.
The doctor said you can have mock issues up to 3 weeks as your nerves and inflation and having to readjust.
Hope this helps

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Can I ask who you used for a doctor? What city? I have Eagles syndrome and need surgery.

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Hi – I realize this comment chain is very old, but. Dr. Edward Hepworth at Sinus Solutions at Immunoe, in Denver, CO, diagnoses and treats Eagles Syndrome. He is an ENT, and performs CSF leak and styloid surgeries, frequently with the help of a neurosurgeon. He also treats CSF leaks and IIH/Pseudotumor Cerebri. He specializes in EDS patients, like myself, and our various cranial and ENT issues. He does not believe I have Eagles Syndrome, though I have all the symptoms, because my CT is clear. I'm still in a pickle. The left side of my neck has every single Eagle's Syndrome symptom and it feels to a T like it. I swear if they open up my neck they'd find it! But according to imaging, nothing is amiss. Alas.

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@travelgirl

@hoping @rondam @jackiejean So sorry you are all going through this. It is very rare to have eagles syndrome. So few people have this disease. I posted above a list of Dr's who treat eagles syndrome. If I can offer any advice. Please make sure whoever you deal is a TOP SPECALIST in the dealing with Eagles Syndrome.
Here is another site I found with advice, tips and lists of Dr's people have used to treat eagles syndrome.

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
I wish you all the best.
Jackie

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It took more than a couple of ENT's for diagnosis with me. A panoramic ct scan (you sit in a chair and the device rotates around your head) was the only way the tech or doctor could see what the F I was talking about! Im 55 years old. It has been over 20 years since then. I want surgery but cant find someone that "wants" to do it. Meaning one surgeon at a fairly prominent hospital (Loyola University) was wiling but stated it in such a manner as to not give me confidence. There are a lot of vital nerves and blood vessels in there. That being said, as I understand it a surgeon can go in externally or inter orally (through the mouth, into the throat). This last method has a poor surgical field but sounds safer to navigate around the vital stuff. Either way Im ready after all these years. It messes with my sleep. Maybe it is the angle of my neck on my pillows but I wake up all the time with pain in that region. Pushing on the one gland in my neck, the one that swells when you are sick, creates pain and pushes up so it crackles in my ear. I did recently watch a you tube video on the surgery so some one ifs doing it. I'd like to find a surgeon in my area near Chicago. It seems to be getting worse. Maybe the calcification is growing. I have read of some doctor papers( I forget the terminology), pre and post, that did have patients that had symptoms eliminated most but not all. Im ready.

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@zebraclaire97

Hi – I realize this comment chain is very old, but. Dr. Edward Hepworth at Sinus Solutions at Immunoe, in Denver, CO, diagnoses and treats Eagles Syndrome. He is an ENT, and performs CSF leak and styloid surgeries, frequently with the help of a neurosurgeon. He also treats CSF leaks and IIH/Pseudotumor Cerebri. He specializes in EDS patients, like myself, and our various cranial and ENT issues. He does not believe I have Eagles Syndrome, though I have all the symptoms, because my CT is clear. I'm still in a pickle. The left side of my neck has every single Eagle's Syndrome symptom and it feels to a T like it. I swear if they open up my neck they'd find it! But according to imaging, nothing is amiss. Alas.

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Has he performed a panoramic radiograph. I hope this is the correct terminology. That is how they diagnosed my. You sit upright in a chair and the device goes all the way around you. Also the technician reading the scan needs proper direction on what to look at/for to to write up a conclusion.

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@linda21

CT scan came back and, of course, it’s Eagle Syndrome!

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I have had feeling of very tender "lump" on right-hand side right below my ear/behind jaw for 2-3 years now. The pain and "pinched nerve" feeling/engorged feeling radiates through-out the right side of my face, up to my head/temple and down to my shoulder. I also have "zaps" down through my chest sometimes. I have had ENT doctors order ultrasound, CT & MRI, but never a diagnosis of ES.
I attached pics of my CT that I took snapshots of my images but was not able to window/level manually or measure the styloid process, but I can see that my RH styloid process is longer than my LH side. It doesn't look as long as other example ES images I have seen, but I definitely think it is impacting nerves and possibly vascular on my RH side. I am in Tampa, FL area and also in the VA Healthcare system. I have a VA ENT appt. coming up in December, but not sure I will make much headway in getting an accurate diagnosis…tired of being told it's "in my head" and try gabapentin, etc.!!!

RH Styloid Process 1

RH Styloid Process 2

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@holemania

I have had feeling of very tender "lump" on right-hand side right below my ear/behind jaw for 2-3 years now. The pain and "pinched nerve" feeling/engorged feeling radiates through-out the right side of my face, up to my head/temple and down to my shoulder. I also have "zaps" down through my chest sometimes. I have had ENT doctors order ultrasound, CT & MRI, but never a diagnosis of ES.
I attached pics of my CT that I took snapshots of my images but was not able to window/level manually or measure the styloid process, but I can see that my RH styloid process is longer than my LH side. It doesn't look as long as other example ES images I have seen, but I definitely think it is impacting nerves and possibly vascular on my RH side. I am in Tampa, FL area and also in the VA Healthcare system. I have a VA ENT appt. coming up in December, but not sure I will make much headway in getting an accurate diagnosis…tired of being told it's "in my head" and try gabapentin, etc.!!!

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Sounds painful, @holemania. Welcome to Mayo Clinic Connect. Thanks for sharing the images.

I'd like you to meet @travelgirl @johealy31 @zebraclaire97 @paulaturner @eaglegirl1 and others. Hoping they can be helpful to you as you try and get a more definitive diagnosis.

I'm presuming from what you said, holemania, that you think ES is very likely your diagnosis?

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@lisalucier

Sounds painful, @holemania. Welcome to Mayo Clinic Connect. Thanks for sharing the images.

I'd like you to meet @travelgirl @johealy31 @zebraclaire97 @paulaturner @eaglegirl1 and others. Hoping they can be helpful to you as you try and get a more definitive diagnosis.

I'm presuming from what you said, holemania, that you think ES is very likely your diagnosis?

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Lisa, thanks for welcome. Yes, just based on my "weird" symptoms…that's what i believe right now.
I also have terrible tinnitus/ringing in both ears 24/7 – when i clamp my teeth together, the tinnitus tone changes to a different frequency.
I've explored all the options i can think of…I had all amalgam fillings removed (thought i might have heavy metal/mercury poisoning).
We've had EMF measurements done at house and turned off/unplugged all wireless devices.
I've had ultrasound, CT & MRI images performed but ENT dismissed my inquiry and thought that the tender lump and adjacent nerve pain and tender engorged feeling in my neck, jaw, face and temple could be related to a styloid process issue.
I wish I knew, but I feel like the epi-center of all my issues are right in that area on the right side only behind my jaw/under the ear lobe.
Thanks,
Dave

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Hi,
There are less invasive surgery options out there. I had surgery Nov 11, 2019 to remove the styloid process on both sides using robotics intra- orally. With the robot they have more access and it is more precise. Problem is not a lot of surgeons are trained on the robot. I won't say everything is perfect but I am much better. Based on most peoples recovery I am doing far better and I had a severe case. I don't know where you live both Dr. Trevor Hackman at UNC Chapel Hill is doing the surgery using robotics. He has an excellent reputation. I hope this helps.

Chrisitna
.

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@christina61

Hi,
There are less invasive surgery options out there. I had surgery Nov 11, 2019 to remove the styloid process on both sides using robotics intra- orally. With the robot they have more access and it is more precise. Problem is not a lot of surgeons are trained on the robot. I won't say everything is perfect but I am much better. Based on most peoples recovery I am doing far better and I had a severe case. I don't know where you live both Dr. Trevor Hackman at UNC Chapel Hill is doing the surgery using robotics. He has an excellent reputation. I hope this helps.

Chrisitna
.

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Thanks for info Christina!
I have VA ENT appt. next week and hope to be referred to a non-VA ENT who is familiar with ES and surgery.
I'm trying to get referred to Dr. Jeffrey Magnuson near Orlando (I am in Tampa area).
Dave

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