Hi there, fellow Eagle syndrome colleagues!
Many thanks to those who maintain this important site and those who contribute with their personal stories and experience.
My personal journey is as follows: in December of 2023, I started having pulsatile tinnitus one day while at work. I am a 63 year-old pediatric ICU doctor, so thought it was due to the many alarms that had gone off that day.
The pulsatile tinnitus persisted, and was constant, so I saw a neuro-otologist ( an ear, nose and throat specialist who focuses on hearing) a few days later. He mentioned that a cerebral angiogram might be needed if the symptoms persisted. In the meantime, he ordered a contrast CT of the temporal bone, which showed that I had asymmetric prominence of the transverse and sigmoid sinus, and jugular bulb, read as within normal limits.
By March of 2024, the tinnitus was much worse , more prominent on the right than the left ear, and I started having daily headaches, particularly in the afternoons, and with activity. That May, I had the first of two ER visits due to the severity of the headache, and a cerebral angiogram after seeing a vascular neurologist.
The angiogram was primarily done to rule out a dural arteriovenous fistula, which is an abnormal direct connection between an artery and a vein, bypassing the normal capillary network, and which can cause hemorrhage in the brain.
My angiogram showed only prominent bilateral posterior condylar veins. Condylar veins are typically small veins that are remnants and vary from person to person, as normal variants thought to help cool and decompress any obstruction in the jugular vein.
The interventional neuro-radiologist (a radiologist who focuses on the vessels supplying the brain and spinal cord, and can fix problems associated with these vessels) thought my condylar veins to be normal variants and offered to try to close them if the tinnitus became so debilitating as to cause severe, life-threatening emotional distress.
I wondered if there could be downstream obstruction to explain the prominent veins, but the physicians scoffed at the idea.
Medical treatment for migraine and other headache syndromes was recommended, and I started taking acetazolamide to see if it would help.
At that point, I started searching the internet for specialists around the country, and ended up making an appointment to see Dr. Athos Patsalides, an interventional neuroradiologist affilliated with the Northwell healthcare system in New York, who showed me what 3 clinicians and 4 radiologists had missed: I had elongated styloids compressing my jugular veins at the level of the first vertebral body, C1.
Dr. Patsalides recommended consultation with Dr. Sheng-fu Larry Lo, an experienced neurosurgeon, and I saw Dr. Lo a few days later. Dr. Patsalides performed a venogram in early 2024, which demonstrated the narrowing, particularly with neck flexion, and somewhat increased intracranial intravenous pressure. The venogram showed only modest gradients ( 2 mmHg) but included a 3-D reconstruction which demonstrated very extensive collaterals.
My mom is 90 and my schedule is tight, so I tried to get a styloidectomy where I live, which entailed consultation with three neurosurgeons who were skeptical of the diagnosis made by Dr. Patsalides, but offered, after a lumbar puncture, and a second angiogram, to tackle the styloid.
In the end, I decided to go to New York for surgery with Drs. Larry Lo and Peter Costantino. Ms. Vanessa Fuentes, from Dr. Lo’s office, helped coordinate all my preop appointments, making everything much easier for me.
I saw Dr. Costantino in his office in White Plains, NY. He discussed the surgical plan in detail from his perspective as a highly experienced Head and Neck surgeon. I was very impressed by his kind but decisive approach to patient care.
I had my surgery with Drs. Lo and Costantino on May 23, 2025 at North Shore University Hospital, in Manhasset, NY.
The surgery, which included complete styloidectomy at the skull base, after taking down the digastric muscle and other soft tissues, and creating a clear view of the C1 tubercle , the major contributor to the stenosis in my case, so that Dr. Lo could trim it down, went very well.
I was surprised to wake up feeling better, with reduction in the headache and tinnitus, a symptom which both Drs. Lo and Costantino had warned me would be the least likely to improve.
An overnight stay with a drain was very comfortable. The postop pain plan included scheduled IV acetaminophen, and opioids available as needed, but the pain was minimal compared to other surgeries I’ve had, and also noted by other contributors to this forum.
The drain removal was also painless. My neurosurgeon, Dr. Lo stopped by to check on me and discharged me in time for lunch with my family.
I saw Dr. Costantino in his office on day 5 postop. I stayed locally for about 10 days, enjoying the Long Island area before flying home, where I am continuing my recovery before going back to work in a couple of weeks - feeling great, now off acetaminophen for the first time in 15 months!
The greatest challenge right now has been to be mindful of postop restrictions in activity… tough when you are feeling better!
Once again, a huge thank you to those who maintain this site and those who contribute to it.
Advocacy is hugely important, since few physicians - even well-known neurologists, neuroradiologists, and neurosurgeons may not not be aware or have experience managing disorders of cerebral venous outflow, including Eagle syndrome causing jugular venous stenosis.
I am very fortunate to have the medical background needed to lead me to the most experienced team in the country, if not the world, but I feel for those less empowered to advocate for themselves with the complex and very severe symptoms that can be experienced for a long time before relief is achieved by surgical intervention.
