LETTER to Isaiah

General
1

Continuing the discussion from Best, Safest Treatment for Eagle's Syndrome:

I CHANGED IT A BIT - READ THIS ONE AND WOULD LIKE YOU TO LOOK AT ALL THE TESTS I HAD ABOVE AND TELL ME WHICH ONES TO PRINT OUT FOR THE DOCTOR. Appt is 8:40A tomorrow.

I think I could have a rare condition that not too many doctors know about called EAGLES SYNDROME (ES) (aka elongated styloids).
I’m hoping you can help me sort everything out and get me to the right specialist to address what’s happening to me on nearly a daily basis.

●SYMPTOMS (started in April, 2020 – intensities vary day-to-day

  1. EXTREME BP SPIKES (come on SUDDENLY – very often over 170 and even 200; FEEL PRESSURE building in head to point of faint-feeling)
  2. Head Pain (migraine-like) – Lower Occiput and sometimes Temple (side varies)
  3. Throbbing/Pulsating/Vibration– Lower Occiput
  4. Tinnitus (Pulsatile/Whooshing) – 24/7 (this symptom started in February, 2021)
  5. Light-Headedness/FAINTING Feeling when PRESSURE BUILDS in my head from BP SUDDENLY SHOOTING UP
  6. (Back of head) Neck Pain, Sore Throats that last 1-8 days, feeling of something stuck in my Throat (all come-and-go)
  7.  Eye Phosphenes
  8. Moderate-severe “Shaking” of body (possibly “dystonic storms”?) with feeling VERY COLD throughout.

●Since there are 2 types of ES– CLASSIC and VASCULAR Eagle’s Syndrome - I believe I could have the vascular type because of how my BP spikes VERY SUDDENLY, with no warning, and I feel like I’m going to faint.

●MEDICATIONS

  1. 25 mg Metoprolol Succinate 2 x day
  2. 10 mg Lisinopril PRN
  3. 0.1 mg or 0.2 mg Clonidine when BP goes over 170 Systolic or if Diastolic is 100 or Greater - PRN

•HISTORY
●Saw Dr. James Atkins, an ENT Neurotologist and Otolaryngologist in June, 2021
●Put me on 25 mg Metoprolol Succinate 2 x day.
●Seemed to cause the EXTREME BP ATTACKS to go into remission for 2 years; all the other symptoms remained, but were greatly lessened.
●The BP attacks returned October 2, 2023, with a vengeance after last chiropractic adjustment and after stopping the Metoprolol in June (2023 (stopped because my hair was starting to fall out). Had a dystonic storm with the attack for 45 minutes in the chiropractic office.

●DIAGNOSES

  1. Tortuous Vertebral Arteries
  2. VERTEBRAL ARTERY COMPRESSION OF MEDULLA
  3. Elongated Styloids (EAGLE’S SYNDROME) (3.7 cm left side and 3.8 cm right side)
    My symptoms have been blamed on high blood pressure, BUT with the diagnoses of Vertebral Artery Compression and Elongated Styloids, I believe these may be causes or at least contributors.

●There are Vascular Eagle’s Syndrome variants where the internal jugular vein and/or internal carotid artery can become compressed, and in rare cases ES can cause dystonic storms (seizure-like activity), which I have experienced, but am uncertain whether or not they are related to vascular compression.

What is your opinion…?

I would like to ask you if you could refer me for a DYNAMIC Head and Neck CT Scan w/ Contrast – which includes evaluation of styloid processes, stylohyoid ligaments, and hyoid bone as well as carotid arteries and jugular veins (looking for any/all vascular compression).

After doing much research on Eagle’s Syndrome (livingwitheagle.org), I’ve learned there are very few physicians who are familiar with this rare condition who diagnose it and even fewer who will do the surgery. I am very concerned about my situation due to the possible vascular component causing the extreme BP I am having.

There is a YouTube Video on Eagle’s Syndrome which has video footage of an ES patient having a dystonic storm. This video would allow you to see the rare dystonic storm symptom I am referring to that ES can cause. Go to YouTube on your computer & type in KEVIN BEAVER/DR. RYAN OSBORNE. The dystonic storm sequence is at 5:05-5:14 in the video . The video link is

There are many Peer-Reviewed Medical Research Papers on this topic available on the internet, and there links to a number of these on the LIVING WITH EAGLE forum: Research Papers - Living with Eagle

I’m hoping you can give me direction and help me with the right next steps to take.

2

Julie,
Here is the final edit of your letter, I attached a link to a copy of it in Word which should make it easier for you to print. Just open the Word Doc & print it rather than fooling around w/ trying to copy your letter off this forum.

:slight_smile: Wendy

I think I could have a rare condition that not too many doctors know about called EAGLES SYNDROME (ES) (aka elongated styloids).
I’m hoping you can help me sort everything out and get me to the right specialist to address what’s happening to me on nearly a daily basis.

●SYMPTOMS (started in April, 2020 – intensities vary day-to-day

  1. EXTREME BP SPIKES (come on SUDDENLY – very often over 170 and even 200; FEEL PRESSURE building in head to point of faint-feeling)
  2. Head Pain (migraine-like) – Lower Occiput and sometimes Temple (side varies)
  3. Throbbing/Pulsating/Vibration– Lower Occiput
  4. Tinnitus (Pulsatile/Whooshing) – 24/7 (this symptom started in February, 2021)
  5. Light-Headedness/FAINTING Feeling when PRESSURE BUILDS in my head from BP SUDDENLY SHOOTING UP
  6. (Back of head) Neck Pain, Sore Throats that last 1-8 days, feeling of something stuck in my Throat (all come-and-go)
  7. Eye Phosphenes
  8. Moderate-severe “Shaking” of body (possibly “dystonic storms”?) with feeling VERY COLD throughout.

●There are 2 types of ES– CLASSIC and VASCULAR Eagle’s Syndrome - I believe I could have the vascular type because of how my BP spikes VERY SUDDENLY, with no warning, and I feel like I’m going to faint.

●MEDICATIONS

  1. 25 mg Metoprolol Succinate 2 x day
  2. 10 mg Lisinopril PRN
  3. 0.1 mg or 0.2 mg Clonidine when BP goes over 170 Systolic or if Diastolic is 100 or Greater - PRN

•HISTORY of Metoprolol Succinate use

●Saw Dr. James Atkins, an ENT Neurotologist and Otolaryngologist in June, 2021
●Put me on 25 mg Metoprolol Succinate 2 x day.
●Seemed to cause the EXTREME BP ATTACKS to go into remission for 2 years; all the other symptoms remained, but were greatly lessened.
●The BP attacks returned October 2, 2023, with a vengeance after last chiropractic adjustment and after stopping the Metoprolol in June (2023 (stopped because my hair was starting to fall out). Had a dystonic storm with the attack for 45 minutes in the chiropractic office.

●DIAGNOSES

  1. Tortuous Vertebral Arteries
  2. VERTEBRAL ARTERY COMPRESSION OF MEDULLA
  3. Elongated Styloids (EAGLE’S SYNDROME) (3.7 cm left side and 3.8 cm right side)

My symptoms have been blamed on high blood pressure, BUT with the diagnoses of Vertebral Artery Compression and Elongated Styloids, I believe these may be causes or at least contributors.

●There are Vascular Eagle’s Syndrome variants where the internal jugular vein and/or internal carotid artery can become compressed, and in rare cases ES can cause dystonic storms (seizure-like activity), which I have experienced but am uncertain whether or not they are related to vascular compression.

What is your opinion…?

After doing much research on Eagle’s Syndrome (livingwitheagle.org), I’ve learned there are very few physicians who are familiar with this rare condition who diagnose it and even fewer who will do the surgery. I am very concerned about my situation due to the possible vascular component causing the extreme BP I am having.

There is a YouTube Video on Eagle’s Syndrome that shows a patient (Kevin Beaver) having a “Dystonic Storm”. This video would allow you to see the rare dystonic storm symptom I have referred to that ES can cause. Kevin Beaver’s dystonic storm appears at 5:05-5:14 in the video . To view the video, search YouTube for KEVIN BEAVER/DR. RYAN OSBORNE.

There are many Peer-Reviewed Medical Research Papers on the topic of vascular compression in conjunction with ES available on the internet, and there links to a number of these on the LIVING WITH EAGLE forum: Research Papers - Living with Eagle

Would you please refer me for a DYNAMIC Head and Neck CT Scan w/ Contrast – which includes evaluation of styloid processes, stylohyoid ligaments, and hyoid bone as well as carotid arteries and jugular veins (looking for any/all vascular compression).

I’m hoping you can give me direction and help me with the right next steps to take.

Julie’s Letter 2.pdf (36.2 KB)

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