Dear All,
First and foremost, I want to say how delighted I am to have found this forum and the wealth of valuable information shared by users worldwide, who, like me, suffer from Eagle Syndrome—a condition that is rarely recognized, diagnosed, or treated.
I came across this platform about five months ago (never got a chance to open an account) following my diagnosis after a car accident in February, where I was rear-ended at a red light. This whiplash injury worsened my lifelong nerve-related symptoms, and despite visiting numerous doctors in Florida, none could pinpoint the issue. After extensive research based on my symptoms, I made an appointment with Dr. Jeffrey Middleton in Fort Lauderdale, for which I will be forever grateful.
The 3-D CT angiography he ordered revealed elongated styloids—what I had been searching for decades most probably. The radiology report indicated severe stenosis (about 90%) of the dominant right jugular vein, trapped between the transverse process of C1 and the styloid process. This stenosis persisted with head rotation to the left. Additionally, the left jugular vein showed moderate stenosis (about 60%) in the neutral head position, which eased with head rotation. Both styloids are abnormally elongated, measuring over 4 cm, with the tips—especially on the right—fractured/ broken, and dangerously close to the cervical carotid arteries.
Thankfully Dr. Middleton, an Atlas Orthogonal specialist, spent an entire day with me, carefully adjusting my atlas bone using a special sound wave/percussion instrument to reduce compression until the surgery, which brought much relief, particularly after the recent trauma of the whiplash. However, he clearly informed me that I would need a true expert to remove the styloids due to the high risks involved in my particular case.
I was then referred to Dr. Hepworth, but his wait time for surgery was 6-8 months, which was disappointing. My family and friends insisted I seek a second opinion in Turkey (now known as Turkiye). Unfortunately, I had also injured my back in the accident and had to wait a month or two before I could fly.
Once I arrived, I consulted three ENT/Head & Neck specialists, each the head of their departments at different hospitals. However, I experienced medical gaslighting, and all of them refused to operate, citing more risks than potential benefits. It was clear that they lacked experience, especially with vascular Eagle Syndrome, and none had the special software (Radiant Viewer, I believe) necessary to properly assess my 3-D tomography. Despite having screenshots provided by Dr. Middleton, they barely looked at them. They performed an angiogram (without head rotation) and declared everything was fine, advising me to continue living my life as usual. This was extremely disappointing, as my symptoms are clearly related to vascular Eagle Syndrome.
To name a few of those symptoms: I’ve suffered from extreme neck tension, discomfort, and sometimes pain; visual disturbances like double or blurred vision; ear discomfort, including tinnitus-like ringing; intracranial pressure; and a foreign object-like feeling in my throat when swallowing, especially with my head down, along with severe lifelong anxiety, depression & bowel disturbances despite healthy eating and living style. I’ve also once experienced a transient ischemic attack after self-adjusting my neck due to major discomfort, where I fainted instantly, along with countless vasovagal syncopes (non-epileptic fainting episodes), which I believe are caused by the styloids compressing my vagus nerve, restricting blood flow to my brain, especially during stressful or traumatic events. As someone who has dealt with Complex PTSD (C-PTSD) most of my life, these past seven months have been particularly challenging.
On a side note, I had undergone a brutal tonsillectomy at age seven (about 42 years ago), performed while sitting on a chair in a doctor’s office using solely a numbing injection, much like at the dentist’s office. I believe my styloids started forming then, as I’ve read literature suggesting a correlation between tonsil removal (soft tissue damage) and styloid formation.
Last week, when I opened my account here, @Jules in the forum mentioned that @gramos had undergone a styloidectomy in Istanbul with Dr. Kamran Aghayev about a month ago. I’ve already contacted his assistant and have an appointment in a week. I’m hopeful that I will finally meet a specialist who listens and understands my symptoms and deem surgery necessary. I’m also scheduled to see another doctor in Istanbul, Prof. Gunter Hafiz, who is also known for performing styloidectomy, and was recommended by a family friend.
Attached are a few images from my CT scan that show the compression. I want to thank Jules, Gramos and everyone in this group for sharing their stories, from which I’ve learned so much in just the past week. I will keep you all updated on my progress after my doctor visits next week.
Be well until then. Much love to you all. Sending my best 
.
