Eagles Syndrome, a tale of perseverance and renewal

Three years ago, I spent a hot minute in LA. I needed insurance, and I needed healing. As soon as I arrived I found Santina, a cranial sacral therapist working out of Everybody Gym. When we met, we both recognized  one another, and our work together began. 

I was crashing with some friends in Highland Park when Santina made a home visit. She walked into the house and said “oh my God this is surreal. My ex and I almost bought this house 7 years ago.” We knew we were in alignment.  

As our friendship blossomed, and Santina continued to teach me. We were laying under a tree one afternoon and she said “I think I know part of what’s going on with you. I went down a rabbit hole last night doing training with @upledger. I found a video of a therapist  talking about her daughter who has #ehlersdanlossyndrome. From there, she described her daughters symptoms and her quest to find answers. Many of her symptoms were the same as yours..she said she could feel a bone in her throat (which has been my mantra for years) among many other things. She discovered her daughter had Eagles Syndrome. 

Eagles is when your styloid processes (usually 2mm long) calcifies and grow up to 4-6 inches. People with EDS produce a ton of calcium because that’s the body’s line of defense when you have instability. If you have instability in a place long enough, calcium deposits occur-adhering to, or creating bones. It’s called “eagles syndrome” because your styloid processes grow to look like eagle’s talons. 

When I moved back to Alabama, my CST Melissa told me she was at upledger that summer and heard the same talk. “I really think this is what is going on!” Melissa said. 

Intuitively I knew they were correct. Because of their guidance, I have learned how to go into my body and heal. My inner physician is alive and well, but I could not heal this, as hard as I have tried. Before any images were taken, I knew in my bones (ha) I had cranial cervical instability, tethered chord and eagles.. among many other things. 

In regards to Eagle's Syndrome, my symptoms have been as following.. and this may not be entirely comprehensive, because all of these acute paints have been effecting my head, spine, and nervous system. This has created a symphony of pain, beyond what even most Ehlers-Danlos holders will even experience in their lives.

- light sensitivity
-sound sensitivity
-sensitivity to touch, smell, chemicals, movement and vibration
-positional (upright) head aches (that feel like a thousand pounds of pressure pushing down on my head)
-the feeling of ice picks in my eyes
- cognitive dissonance ( I could not listen to people talking for long without going into complete sensory overload, which is a pain that is hard to describe. It HURT to try to process language. It HURTS to try to formulate words. At times I still cannot bring the thoughts in my mind to come out my mouth- it is extremely painful)
-screaming- non-stop screaming
-acute pain at the top of my head, resulting in me needing to bend over and put pressure as hard as possible against my head- for almost a year, i carried a metal pie pan around with me wherever I went- because these "episodes" can happen at any minute taking me captive by surprise
-loss of control of my extremities
- extreme facial and jaw pain (particularly right sided). This pain takes on every form of pain possible, from lightning nerve pain, to deep muscle pain, to burning, stabbing, instability type of pain.
- 24/7 activation of my vagus nerve. This manifested itself many different ways. From always being in fight-or-flight in my entire body, to suddenly and randomly having diarrhea + vomiting, to being unable to regulate my temperature, feeling extremely unsafe in my surroundings, heart palpitations, anxiety, and heightened sensitivity to all things
- carotid artery malfunctioning- for most days, especially when things would strike, i would feel like someone was choking my neck, blocking he blood flow to my brain. 
- choking- for years, I have been choking on most things I ate. This would come and go in waves, but it has (and still does) feel like there's something stuck in my throat
- The feeling like my head is on crooked, and always off balance. I think this has less to do with eagles, and more to do with the dysfunction in my neck and face.
- 24/7 "migraine", which is quite the understatement. I've had migraines since I was 5, and this experience has been quite different. It's more like constant sledge hammer pain, unable to process anything, always being careful  because it was constant and any little thing could tip it over the edge. 
- The feeling like there is a "bone in my throat" always poking me and pushing on nerves, vessels and arteries

Then the long long odyssey continued with the medical system, because I was able to get insurance and the support of my family. I’ve gone through 4 highly regarded hospital systems including Mayo Clinic, Cedars Saini, University of Alabama Birmingham Hospital, Medical University of South Carolina, and local hospitals that actually killed me due to neglect and ignorance - This is Decatur General and The Huntsville Hospital Medical system- whom I intend to sue as soon as I am able to get my feet under me. I have had more testing and images than I thought possible- most showing the abnormalities very clearly, but Doctors chose to ignore the signs and symptoms that were in front of them so that they could not get sued.

This road has been so incredibly hard- harder than anything I have ever done. I have screamed for my life and have fought until i’m batterted black and blue to live. My friends have been angels who have called and researched on my behalf, raised money, sent cards of rocks and tarot and loving words. After my fusion surgery and the trauma that surrounded all of that, my mother and father finally stepped up to help, because they really had no choice. My mom has taken me to some of the leading EDS specialists in the US. This is a privilege, while also being extremely traumatizing.  

At every turn, I advocated for myself. Everyday things would get worse. I’d go into some doctors offices screaming in pain. They’d take images. I’d point to my styloid process and say “what is this? This is eagles. You can see it right here!!” At each turn I was dismissed, told I was crazy or that “it’s just a product of EDS, right?” . I have been abused by healthcare providers more than you could possibly comprehend. 

Every day I look in the mirror and see the noticeable changes in my eyes, my jaw, my face. I have worked with healers, facing the trauma, learning how to calm my nervous system. Any type of healer and body worker I could find that resonated, I would approach and do the work- physical, emotional and spiritual. I have not missed a day of meditation, a huge tool I have that helps regulate things so I can semi-function. The pain continued amplify. I have spent months screaming with my head against a wall, a pie pan, and with the wooden board I sleep with above my head. I have spent most of my days trying to calm my nervous system enough to function, never knowing what would set me off. 

I have felt like my trauma is so deep and my nervous system so fucked, I’d never get out of fight or flight. I’d never find anything to ease the pain. Doctors don’t even touch your body when you ask them to FEEL THE BONE, feel the abyss in the top of my head! That’s always been weird to me, but I recognize how intimidating this is for people. 

Trusting the process and trusting divine timing is hard. It’s harder when you feel like you could die at any time, any day. Over the past 3 years I have had 5 major surgeries. How in the world did these reputable doctors NOT see this while they opened up parts of my body?

At my Whits end, my mom called the EDS society’s help line. We were out of options. You have no idea the toll this has taken on me, my family and the people I love the most. The helpline told mom we needed to visit Dr.Chopra in Rhode Island. He is a complex condition interventionalist diagnostician. 

This April, Santina came to Alabama for an entire week to participate in healing work on my body. I treasure the gift of her presence so much. We both learned so much. Again, healing occurred and things became a little easier and much clearer. Again, her knowledge and intuition pointed to Eagles.   It was my birthday, and we both coined this year as “the year of Meg’s rebirth”. 

In May, mom reluctantly (but perfectly!) drove me in my van up to visit Dr. Chopra. He had all my records in hand. I did not advocate for myself, but allowed him to steer the visit- since he is the best complex chronic pain diagnostician in the world. He did a lengthy physical examination. Then he came back and diagnosed me, from my head to my toes. The FIRST thing he said was “you have eagles syndrome” and I wept. The validation was richer than I could have imagined. On and on he went with more clarity and affirming everything I’ve known for a long time. 

“Go see Dr. Bolognese. He is the best surgeon and the only one who can help Meghan”. His wait list was 2 years long. 

As we started to head home, another attack ensued at a gas station. Everyone was freaking out hearing my screams from the van. We couldn’t go home while I was in this condition. Mom called Dr. Chopra, who called Dr. Bolognese asking for an emergent favor. That following week, my mom and Dr. B’s staff worked together to get all my records in for evaluation. And guess what? He accepted my case and would admit me for testing the following week!! Pre surgical testing happened, and It showed that I had caught the COVID, postponing testing and surgery for 3 weeks. You can read all about this on my caring bridge site. 

After extensive, grueling testing, Dr. B ran me through 3D CAT scan with contrast and found my eagle talons. Later that day ENT came and numbed the areas where those talons resided, as a final confirmation. The next day I would have my right styloid removed. The left one will be removed on August 24th

The most unexpected thing has happened with its removal : I am no longer in an intense state of fight or flight in my body! The pressure has been removed from my vagus nerve, among many many other nerves and arteries that have been effected by this rare abnormality. Even if I had spent my whole life learning how to tame my nervous system, I would have never been able to succeed.. because there was an anatomical causation. 

After my tethered chord release, (which is another long and beautiful story in itself) Dr. B. Was doing rounds and I was coherent  enough to ask a few questions. This was his response,

“ Eagles Syndrome is rare. Within the normal human population, 4% of people may have elongated styloids. Within that group, only 1.5% are symptomatic. Within the EDS population (which fits into that 4%) 25% of you will grow elongated styloids. Only 12% are symptomatic. Yours are the thickest and longest (enter dirty joke) I have ever operated upon. The growth most likely started around age 16. 

This is me with a dear friend around the age when the talons started to grow inside my body.

I also need to comment on how resilient and strong you are. I don’t know how you are sane. From a neurological perspective, I know what has been happening in your body. Everyday you face some of the most intense pain I’ve ever seen. A grown man, in your shoes, would most likely not last long.. even if the pain occurred for a few hours once a week. I don’t know how you are still here, it’s quite amazing” I told him I’ve desperately wanted to die, I have, but I couldn’t move forward with ending my own life. He said, “well I’m glad. You have me now, and we are going to do everything we can to help you.” (Weeping ensued). 

From here, Dr. Bolognase and his team were also able to see 3-4 of these extreme pain facial/had attacks, which have not ceased since the styloid removal (as I had so hoped they would). The team commented that this is something they had never witnessed, and it was a “whole different ballgame” than Eagles and Tethered chord. After I had painstankingly started to walk again, go up and down stairs, and walk without a walker, it was time for me to be discharged from Mt. Saini Nassau. Dr. B told me it was time, and I started to cry deeply out of fear of going back home and still having these scary and insane painful episodes and way of being. It is easy to believe that I won’t be given adequate care, and that my case will be dropped since I have gone through years and years of medical gaslighting and dismissal. Things have just been “too hard and too much” for any doctor to get involved. Even still, as I type this, i am learning how to TRUST what Dr. B said next,

“ Meghan, do not cry and do not lose hope. Remember the conversation we had? Where you told me you were ready to die from euthenasia and I told you I supported that IF there was no hope? I told you that you found me, and I told you that Dr. Chopra and I would do everything we could to get to the bottom of what is going on in your body. I like puzzles that are hard to solve. I have all your records here with me, I am going to study them and I will not forget about you. You are coming back here in 2 months for your left styloid removal, and at that time we will be able to run more testing and have you recovered from these past two surgeries. Do not lose hope. Trust me.”

I am now two months out of my recovery, and there are so many symptoms that have gotten better::

• vagus nerve pinching is gone- no more fight or flight, no more vomiting.. it feels like I have been deoxing from drugs that were continually being punped into my bloodstream without my consent. I have spent more time deeply sobbing, releasing emotions that had been stored for survival than anything else. The removal of the right styloid coupled with the tethered chord release (which I will share about soon) has taken a coplete overhaul and restructuring of my nervous system. Harder than you would think!

• I am able to hold conversations for longer periods of time without shutting down completely.. Not only can I comprehend what others are saying, but I am able to speak the words that come into my mind within seconds (sometimes this is still very hard, though)

• Less frequent “ screaming pain attacks”, where the pressure builds and I need to put the top of my head against a hard surface, I cant stop screaming, my entire face feels like it’s exploding from within, and everything goes completely haywire. However, this is still occuring and will come at completely unpredictable times.. and will then stick around for several days.

• I am able to read again! I have read 6 fiction books in the past 2 months!

• Postural (upright) head pain is minimal, and I’m no longer as effeted by positioning.

• light, sound, movement, smell and touch sensitivity has drastically decreased.. I still have to wear my red glasses and a huge hat outside, but there are times where I can be without them.

• Increased movement and healing in my jaw and facial bones now that they are not restricted by the styloid

• No longer feel like someone is choking me and cutting off blood flow to my brain from my corotid artery on the right side (the left is still symptomatic)

• Less choking!

• Return of my past facial structure

• My head and my face still feel lopsided, which is the indication that something else is happening other than Eagle’s Syndrome

A few days ago, my mom told me she often prays Isaiah 40:31  over me. 

“But those who trust in God will find new strength.

They will soar high on wings like eagles.

They will run and not grow weary.

They will walk and not faint.” 

She researched how eagles renew their strength and youth. Guess how? They pick off their talons one by one to allow stronger ones to grow. 

On This coming saturday, my mom and I ware boarding a train! to make another trip to Long Island. I will have presurgical testing on the 22nd, and will go under for the left styloid removal on the 24th. It is a very complex and complicated surgery, since the styloids are meshed in all kinds of nerves, vessels, arteries etc. Dr. B. is an incredible surgeon and has a team of: a neurologist who applies electrodes to every nerve that could be accidentally cut (I do have facial droop from the previous surgery, but this is said to resolve over time),, and plastics who performs the closure one layer at a time and leaves the tiniest of scars! I have confidence in what I am stepping into.

I know that every person, every situation, every inch of these experiences are divinely guided and are in divine timing. I know I am protected beyond measure by the hand of God and abundance of angels- even when it feels like abandonment.

Now that my talons are being removed, my hope is that restoration will follow and my strength will be renewed. Maybe I’ll even fly.