Eagle Syndrome

@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.

@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

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.

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.

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.

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?