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

Hi members in this thread discussing Eagle syndrome,

Thought you might like to know that Mayo Clinic Connect has opened up a brand new group dedicated to COVID-19, https://connect.mayoclinic.org/group/covid-19/. The hope is to help members connect and cope during these unprecedented times.

Please follow the COVID-19 group by clicking on +Follow, look at the discussions there and participate. You are also welcome to start a new discussion on any COVID-19-related topic you'd like to discuss.

REPLY

I was seeking a portal or messaging service to offer personal medical information related to potential relationship of three relatively rare medical malady’s.

Eagle Syndrome

For over ten years I brought to the attention of my family physician a pain I was having in my throat, she did not attempt to investigate, she referred me to an Ear Nose and Throat physician, he treated my symptoms as a cold with cold remedy recommendations. At another time I was sent to a Gasteral?? Specialist (ENT?) for symptoms of acid reflex, Acid Reflux was diagnosed at the time. While there I brought up my neck pain and was informed it was associated with Acid Reflux. (I consider this guy a quack {My apology’s}, his connecting the pain to Acid Reflux did not seem at all possible, but then I am not a physician). At a later time after asking my physician again, she referred me to a different ENT, 2-26-2019. This time the physician suspected something and ordered a lower cranium CT to investigate potential Eagle syndrome. The following conclusions were reached;
Study Result
EXAM: CT NECK SOFT TISSUE W IV CONT
LOCATION: HS Specialty Ctr II
DATE/TIME: 9/26/2019 1:09 PM

INDICATION: right neck / hyoid pain, concern for Eagle's syndrome
COMPARISON: None.
CONTRAST: IOHEXOL 350 MG/ML IV SOLN 100 mL
TECHNIQUE: Routine with IV contrast. Multiplanar reformats.
Dose reduction techniques were used.
—————
Calcification/ossification of the stylohyoid right stylohyoid ligament measuring approximately 3.6 cm, which can be seen with Eagle's syndrome. Clinical correlation is advised. Multi focal short segment calcification/ossification along the expected course of the left stylohyoid ligament.
—————
Calcified and atherosclerotic plaque contributing to approximately 70% stenosis of the left internal carotid artery origin. Evaluation of the right carotid bulb demonstrates calcified and atherosclerotic plaque with approximately 50 % stenosis of the right internal carotid artery origin. Otherwise normal contrast opacification of the vessels within the neck.

*dashed lines represent unnecessary information
**I include the Carotid Artery paragraph not personally drawing direct relationship to Eagle Syndrome but because in my own research see Carotid Artery comes up often in discussions of Eagle Syndrome. ( they may, or may not be related)

Ocular Migraines

Again, in my research of Eagle Syndrome, I observed a potential link to Eagle Syndrome and Ocular Migraines.
I was recently diagnosed with Ocular Migraines, and get them 5 to 15 times a year, ironically almost daily recently.

David W Johnson, MD at 2/8/2019 9:10 AM
Overall your eyes look very healthy.
You symptoms fit a "ocular migraine"
There is no retina hole/tear or Retina Detachment.
There are no blocked blood vessels.

On my further reading about Eagle syndrome, I also observed
reference to irritation to other nerves on the vicinity to the
effected stylohyoid ligament, it occurred to me a possible
relationship to my vocal chord paralysis from 2001.

Vocal chord paralysis

February 2001 I was working in a factory that made use of
strong solvents, February 14th that year I apparently got laryngitis,
with no other cold or flu symptoms and no history of abrasion or
physical accident to the neck area. I reported to a general physician
and upon investigation with a camera, he observed paralysis of
my left vocal chord. This led to a smorgasbord of specialist the
vocal chord paralysis including; vocal chord, blood born, and
other specialist from other medical fields. (the company I was
working for went into a tizzy and were quite worried over my
mysterious ailment and why, where and how it could have
happened.) this went on for five months until July third 2001, when
my voice just as mysteriously returned to full force.
No definitive diagnoses was provided. The ‘best guess’ was a virus
that eroded the vocal chord which slowly grew back.
9-11 happened after that and the company laid me off, any medical
investigation ceased.

On the interest to discover if there was a relationship of Eagle
Syndrome to Ocular Migraines and Vocal Chord Paralysis, I found
a group in facebook for Eagle syndrome and asked specifically if
other experienced all three malady’s. within three hours I received 5
affirmative posts, three with all three and two with only ocular
Migraines.
Later that evening I received a privet message from Catherine
Nettles Cutter she sent me a link to an article written about her
experiences very much similar to my own story. With the comment
“yes to having all three”.
washington post "The story titled The professor without a voice"
In yet another facebook group for Eagles syndrome, I was informed of a Utube
Video “The morning I woke without a voice", again a case eerily similar to my own.

This began my search that brought me here.
If my three malady’s are in fact related to each other, perhaps more
physicians can be informed of this occurrence, and avoid unnecessary
mis-diagnosis’s. Like the literature that I have read, there have been
study’s in the past. Perhaps my story would be of interest to people or
peoples involved.

I give permission to anyone to share to anyone the contents of this email.

Thank you for reading this long email.

REPLY
@timpendergast

I was seeking a portal or messaging service to offer personal medical information related to potential relationship of three relatively rare medical malady’s.

Eagle Syndrome

For over ten years I brought to the attention of my family physician a pain I was having in my throat, she did not attempt to investigate, she referred me to an Ear Nose and Throat physician, he treated my symptoms as a cold with cold remedy recommendations. At another time I was sent to a Gasteral?? Specialist (ENT?) for symptoms of acid reflex, Acid Reflux was diagnosed at the time. While there I brought up my neck pain and was informed it was associated with Acid Reflux. (I consider this guy a quack {My apology’s}, his connecting the pain to Acid Reflux did not seem at all possible, but then I am not a physician). At a later time after asking my physician again, she referred me to a different ENT, 2-26-2019. This time the physician suspected something and ordered a lower cranium CT to investigate potential Eagle syndrome. The following conclusions were reached;
Study Result
EXAM: CT NECK SOFT TISSUE W IV CONT
LOCATION: HS Specialty Ctr II
DATE/TIME: 9/26/2019 1:09 PM

INDICATION: right neck / hyoid pain, concern for Eagle's syndrome
COMPARISON: None.
CONTRAST: IOHEXOL 350 MG/ML IV SOLN 100 mL
TECHNIQUE: Routine with IV contrast. Multiplanar reformats.
Dose reduction techniques were used.
—————
Calcification/ossification of the stylohyoid right stylohyoid ligament measuring approximately 3.6 cm, which can be seen with Eagle's syndrome. Clinical correlation is advised. Multi focal short segment calcification/ossification along the expected course of the left stylohyoid ligament.
—————
Calcified and atherosclerotic plaque contributing to approximately 70% stenosis of the left internal carotid artery origin. Evaluation of the right carotid bulb demonstrates calcified and atherosclerotic plaque with approximately 50 % stenosis of the right internal carotid artery origin. Otherwise normal contrast opacification of the vessels within the neck.

*dashed lines represent unnecessary information
**I include the Carotid Artery paragraph not personally drawing direct relationship to Eagle Syndrome but because in my own research see Carotid Artery comes up often in discussions of Eagle Syndrome. ( they may, or may not be related)

Ocular Migraines

Again, in my research of Eagle Syndrome, I observed a potential link to Eagle Syndrome and Ocular Migraines.
I was recently diagnosed with Ocular Migraines, and get them 5 to 15 times a year, ironically almost daily recently.

David W Johnson, MD at 2/8/2019 9:10 AM
Overall your eyes look very healthy.
You symptoms fit a "ocular migraine"
There is no retina hole/tear or Retina Detachment.
There are no blocked blood vessels.

On my further reading about Eagle syndrome, I also observed
reference to irritation to other nerves on the vicinity to the
effected stylohyoid ligament, it occurred to me a possible
relationship to my vocal chord paralysis from 2001.

Vocal chord paralysis

February 2001 I was working in a factory that made use of
strong solvents, February 14th that year I apparently got laryngitis,
with no other cold or flu symptoms and no history of abrasion or
physical accident to the neck area. I reported to a general physician
and upon investigation with a camera, he observed paralysis of
my left vocal chord. This led to a smorgasbord of specialist the
vocal chord paralysis including; vocal chord, blood born, and
other specialist from other medical fields. (the company I was
working for went into a tizzy and were quite worried over my
mysterious ailment and why, where and how it could have
happened.) this went on for five months until July third 2001, when
my voice just as mysteriously returned to full force.
No definitive diagnoses was provided. The ‘best guess’ was a virus
that eroded the vocal chord which slowly grew back.
9-11 happened after that and the company laid me off, any medical
investigation ceased.

On the interest to discover if there was a relationship of Eagle
Syndrome to Ocular Migraines and Vocal Chord Paralysis, I found
a group in facebook for Eagle syndrome and asked specifically if
other experienced all three malady’s. within three hours I received 5
affirmative posts, three with all three and two with only ocular
Migraines.
Later that evening I received a privet message from Catherine
Nettles Cutter she sent me a link to an article written about her
experiences very much similar to my own story. With the comment
“yes to having all three”.
washington post "The story titled The professor without a voice"
In yet another facebook group for Eagles syndrome, I was informed of a Utube
Video “The morning I woke without a voice", again a case eerily similar to my own.

This began my search that brought me here.
If my three malady’s are in fact related to each other, perhaps more
physicians can be informed of this occurrence, and avoid unnecessary
mis-diagnosis’s. Like the literature that I have read, there have been
study’s in the past. Perhaps my story would be of interest to people or
peoples involved.

I give permission to anyone to share to anyone the contents of this email.

Thank you for reading this long email.

Jump to this post

Very interesting. I went through most all of these symptoms. It took over two years and many specialist. I even was to Duke were Eagles was discovered by Dr. Eagles and they missed it. I saw many specialist there. Because my insurance changed I had to go to UNC Chapel Hill and after a few different specialist, a head neck surgeon (Dr Trevor Hackman ) discovered I had Eagles Syndrome. My styloid on the rt side was pressing on my Carotid Artery. I was lucky as he was trained in Robotics and he took out both my styloids intro-orally. I got 90% better after surgery. It's very interesting to me that you mention the eye problems. I have them and still do. Right now my nerve fiber is damaged. I have very little left in the left eye and they said something is causing the right eye to lose the nerve fiber also but not as quickly as the right eye. I was having double and blurry vision. I feel like this problem has something to do with Eagles. Too many people whom I've talked to on the Eagles syndrome support group are experiencing very similar things. I've mentioned it to several of my specialist and they don't think so. I'm seeing several different eye specialist and I go to the eye neurologist about once a month. My eyes got so bad I could not read with out seeing double vision. I realized if I covered one eye I could see. So they tested my eyes again and said my eyes were not working together as the muscle had gotten too weak. So they had me were glasses with a prism to hopefully help strengthen the muscle. Since this past week. I now am seeing very blurry vision with my left eye. I've got to go back, but with Covid 19 I've tried to stay away. I wish there was a doctor studying this. I called NORD to see if anyone was studying Eagle's Syndrome. I would be more than willing to do fundraisers for research. But I was told no one is doing it since it's so rare.
The specialist are doing all sorts of testing and MS is on the table but hand to tell at this point. If anyone knows of a doctor that is doing any research I would love to know about it. There are just too many coincidences of patients with Eagle's having all these eye
problems.

I agree more doctors need to be aware of Eagle's Syndrome. I had at least half a dozen MRI/CAT scans before someone looked at them well and saw the styloids. I was told I had TMJ which again I am not a doctor but I knew I didn't have it as I am on a cpap machine and if you open your mouth or move it at night you know it. And I was very vocal about the fact that I knew I did not have TMJ. Another symptom I had was large lymphoids near the carotid artery. I couldn't even tell you how many specialist and Dr./ER visits it took to be diagnosed. Honestly I thought I was dying as the headaches were so wild.

Adriene

Liked by timpendergast

REPLY
@timpendergast

I was seeking a portal or messaging service to offer personal medical information related to potential relationship of three relatively rare medical malady’s.

Eagle Syndrome

For over ten years I brought to the attention of my family physician a pain I was having in my throat, she did not attempt to investigate, she referred me to an Ear Nose and Throat physician, he treated my symptoms as a cold with cold remedy recommendations. At another time I was sent to a Gasteral?? Specialist (ENT?) for symptoms of acid reflex, Acid Reflux was diagnosed at the time. While there I brought up my neck pain and was informed it was associated with Acid Reflux. (I consider this guy a quack {My apology’s}, his connecting the pain to Acid Reflux did not seem at all possible, but then I am not a physician). At a later time after asking my physician again, she referred me to a different ENT, 2-26-2019. This time the physician suspected something and ordered a lower cranium CT to investigate potential Eagle syndrome. The following conclusions were reached;
Study Result
EXAM: CT NECK SOFT TISSUE W IV CONT
LOCATION: HS Specialty Ctr II
DATE/TIME: 9/26/2019 1:09 PM

INDICATION: right neck / hyoid pain, concern for Eagle's syndrome
COMPARISON: None.
CONTRAST: IOHEXOL 350 MG/ML IV SOLN 100 mL
TECHNIQUE: Routine with IV contrast. Multiplanar reformats.
Dose reduction techniques were used.
—————
Calcification/ossification of the stylohyoid right stylohyoid ligament measuring approximately 3.6 cm, which can be seen with Eagle's syndrome. Clinical correlation is advised. Multi focal short segment calcification/ossification along the expected course of the left stylohyoid ligament.
—————
Calcified and atherosclerotic plaque contributing to approximately 70% stenosis of the left internal carotid artery origin. Evaluation of the right carotid bulb demonstrates calcified and atherosclerotic plaque with approximately 50 % stenosis of the right internal carotid artery origin. Otherwise normal contrast opacification of the vessels within the neck.

*dashed lines represent unnecessary information
**I include the Carotid Artery paragraph not personally drawing direct relationship to Eagle Syndrome but because in my own research see Carotid Artery comes up often in discussions of Eagle Syndrome. ( they may, or may not be related)

Ocular Migraines

Again, in my research of Eagle Syndrome, I observed a potential link to Eagle Syndrome and Ocular Migraines.
I was recently diagnosed with Ocular Migraines, and get them 5 to 15 times a year, ironically almost daily recently.

David W Johnson, MD at 2/8/2019 9:10 AM
Overall your eyes look very healthy.
You symptoms fit a "ocular migraine"
There is no retina hole/tear or Retina Detachment.
There are no blocked blood vessels.

On my further reading about Eagle syndrome, I also observed
reference to irritation to other nerves on the vicinity to the
effected stylohyoid ligament, it occurred to me a possible
relationship to my vocal chord paralysis from 2001.

Vocal chord paralysis

February 2001 I was working in a factory that made use of
strong solvents, February 14th that year I apparently got laryngitis,
with no other cold or flu symptoms and no history of abrasion or
physical accident to the neck area. I reported to a general physician
and upon investigation with a camera, he observed paralysis of
my left vocal chord. This led to a smorgasbord of specialist the
vocal chord paralysis including; vocal chord, blood born, and
other specialist from other medical fields. (the company I was
working for went into a tizzy and were quite worried over my
mysterious ailment and why, where and how it could have
happened.) this went on for five months until July third 2001, when
my voice just as mysteriously returned to full force.
No definitive diagnoses was provided. The ‘best guess’ was a virus
that eroded the vocal chord which slowly grew back.
9-11 happened after that and the company laid me off, any medical
investigation ceased.

On the interest to discover if there was a relationship of Eagle
Syndrome to Ocular Migraines and Vocal Chord Paralysis, I found
a group in facebook for Eagle syndrome and asked specifically if
other experienced all three malady’s. within three hours I received 5
affirmative posts, three with all three and two with only ocular
Migraines.
Later that evening I received a privet message from Catherine
Nettles Cutter she sent me a link to an article written about her
experiences very much similar to my own story. With the comment
“yes to having all three”.
washington post "The story titled The professor without a voice"
In yet another facebook group for Eagles syndrome, I was informed of a Utube
Video “The morning I woke without a voice", again a case eerily similar to my own.

This began my search that brought me here.
If my three malady’s are in fact related to each other, perhaps more
physicians can be informed of this occurrence, and avoid unnecessary
mis-diagnosis’s. Like the literature that I have read, there have been
study’s in the past. Perhaps my story would be of interest to people or
peoples involved.

I give permission to anyone to share to anyone the contents of this email.

Thank you for reading this long email.

Jump to this post

@timpendergast, I believe you may be looking to send a message on Mayo Clinic's patient portal called Patient Online Services.
Patient Online Services (https://onlineservices.mayoclinic.org/content/staticpatient/showpage/patientonline) is the portal where Mayo Clinic patients can see medical records, contact their doctor(s), see reports and test results, as well as schedule appointments.

If you are having technical issues with Patient Online Services, contact POS tech support https://signup.mayoclinic.org/help?ApplicationID=6fd03569-c4c9-439c-bbcb-931305671b6d

REPLY

I did that already two weeks ago Coleen, that's what I originally wrote this for. Prior to my finding this forum. Thank You

REPLY
@timpendergast

I was seeking a portal or messaging service to offer personal medical information related to potential relationship of three relatively rare medical malady’s.

Eagle Syndrome

For over ten years I brought to the attention of my family physician a pain I was having in my throat, she did not attempt to investigate, she referred me to an Ear Nose and Throat physician, he treated my symptoms as a cold with cold remedy recommendations. At another time I was sent to a Gasteral?? Specialist (ENT?) for symptoms of acid reflex, Acid Reflux was diagnosed at the time. While there I brought up my neck pain and was informed it was associated with Acid Reflux. (I consider this guy a quack {My apology’s}, his connecting the pain to Acid Reflux did not seem at all possible, but then I am not a physician). At a later time after asking my physician again, she referred me to a different ENT, 2-26-2019. This time the physician suspected something and ordered a lower cranium CT to investigate potential Eagle syndrome. The following conclusions were reached;
Study Result
EXAM: CT NECK SOFT TISSUE W IV CONT
LOCATION: HS Specialty Ctr II
DATE/TIME: 9/26/2019 1:09 PM

INDICATION: right neck / hyoid pain, concern for Eagle's syndrome
COMPARISON: None.
CONTRAST: IOHEXOL 350 MG/ML IV SOLN 100 mL
TECHNIQUE: Routine with IV contrast. Multiplanar reformats.
Dose reduction techniques were used.
—————
Calcification/ossification of the stylohyoid right stylohyoid ligament measuring approximately 3.6 cm, which can be seen with Eagle's syndrome. Clinical correlation is advised. Multi focal short segment calcification/ossification along the expected course of the left stylohyoid ligament.
—————
Calcified and atherosclerotic plaque contributing to approximately 70% stenosis of the left internal carotid artery origin. Evaluation of the right carotid bulb demonstrates calcified and atherosclerotic plaque with approximately 50 % stenosis of the right internal carotid artery origin. Otherwise normal contrast opacification of the vessels within the neck.

*dashed lines represent unnecessary information
**I include the Carotid Artery paragraph not personally drawing direct relationship to Eagle Syndrome but because in my own research see Carotid Artery comes up often in discussions of Eagle Syndrome. ( they may, or may not be related)

Ocular Migraines

Again, in my research of Eagle Syndrome, I observed a potential link to Eagle Syndrome and Ocular Migraines.
I was recently diagnosed with Ocular Migraines, and get them 5 to 15 times a year, ironically almost daily recently.

David W Johnson, MD at 2/8/2019 9:10 AM
Overall your eyes look very healthy.
You symptoms fit a "ocular migraine"
There is no retina hole/tear or Retina Detachment.
There are no blocked blood vessels.

On my further reading about Eagle syndrome, I also observed
reference to irritation to other nerves on the vicinity to the
effected stylohyoid ligament, it occurred to me a possible
relationship to my vocal chord paralysis from 2001.

Vocal chord paralysis

February 2001 I was working in a factory that made use of
strong solvents, February 14th that year I apparently got laryngitis,
with no other cold or flu symptoms and no history of abrasion or
physical accident to the neck area. I reported to a general physician
and upon investigation with a camera, he observed paralysis of
my left vocal chord. This led to a smorgasbord of specialist the
vocal chord paralysis including; vocal chord, blood born, and
other specialist from other medical fields. (the company I was
working for went into a tizzy and were quite worried over my
mysterious ailment and why, where and how it could have
happened.) this went on for five months until July third 2001, when
my voice just as mysteriously returned to full force.
No definitive diagnoses was provided. The ‘best guess’ was a virus
that eroded the vocal chord which slowly grew back.
9-11 happened after that and the company laid me off, any medical
investigation ceased.

On the interest to discover if there was a relationship of Eagle
Syndrome to Ocular Migraines and Vocal Chord Paralysis, I found
a group in facebook for Eagle syndrome and asked specifically if
other experienced all three malady’s. within three hours I received 5
affirmative posts, three with all three and two with only ocular
Migraines.
Later that evening I received a privet message from Catherine
Nettles Cutter she sent me a link to an article written about her
experiences very much similar to my own story. With the comment
“yes to having all three”.
washington post "The story titled The professor without a voice"
In yet another facebook group for Eagles syndrome, I was informed of a Utube
Video “The morning I woke without a voice", again a case eerily similar to my own.

This began my search that brought me here.
If my three malady’s are in fact related to each other, perhaps more
physicians can be informed of this occurrence, and avoid unnecessary
mis-diagnosis’s. Like the literature that I have read, there have been
study’s in the past. Perhaps my story would be of interest to people or
peoples involved.

I give permission to anyone to share to anyone the contents of this email.

Thank you for reading this long email.

Jump to this post

Hello @timpendergast and welcome to Connect. I see that you just recently joined Connect. I found your discussion of diagnosis about Eagle's Syndrome to be very interesting. The part of your post that piqued my interest was the paralyzed vocal cord.

I also have an idiopathic paralyzed left vocal cord (had surgery in 2014 at Cleveland Clinic to fill in the paralyzed cord so that it would close up with the right cord). No ocular migraines, however, I do have blurry vision and fullness/pain in the left ear with tinnitus. Recently after a nuclear test for the parathyroid an "Asymmetric enlargement of the left common jugular vein" was found. To me, this seems like a lot of left-sided coincidences. I would be interested in knowing more about your research.

Are you familiar with any of these other symptoms being related to Eagle's Syndrome?

Liked by timpendergast

REPLY
@hopeful33250

Hello @timpendergast and welcome to Connect. I see that you just recently joined Connect. I found your discussion of diagnosis about Eagle's Syndrome to be very interesting. The part of your post that piqued my interest was the paralyzed vocal cord.

I also have an idiopathic paralyzed left vocal cord (had surgery in 2014 at Cleveland Clinic to fill in the paralyzed cord so that it would close up with the right cord). No ocular migraines, however, I do have blurry vision and fullness/pain in the left ear with tinnitus. Recently after a nuclear test for the parathyroid an "Asymmetric enlargement of the left common jugular vein" was found. To me, this seems like a lot of left-sided coincidences. I would be interested in knowing more about your research.

Are you familiar with any of these other symptoms being related to Eagle's Syndrome?

Jump to this post

Thank you for the reply/ coment/ question. It seems most of the list of symtom's I've found, comes from sources like Wikapedea, and studies on Eagle Syndrome from medical personal. Unfortunately those sources do not go deeply into case studys, the personal stories and what makes our own individual experiences differant, and at the same time collectively simular.
I've found I get the most out of the personal stories from other forums, like facebook groups, and others you can find burried in google searches, how I found this one. In these forums I've mostly attached relationships between my three particular primary rare malidys, Eagles, Ocular Migrains, and Vocal Chord paralysis. I've collected quite a surprising chorus of like symtomed individuals. As far as other symptoms I have not highlighted, since I do not particularly witness them and have not highlighted them, I have not seen others with the like.
I would highly suggest joining one of the many facebook groups that come up with a search for Eagle Syndrome facebook groups and ask there.

My personal goal is to seek out and involve medicle professionals in the discussion, which I'm not seeing much of. My question… where are they?

REPLY
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