I’m sharing my story to help others make decisions and hopefully have a shorter journey than I have. I had a left intraoral styloid excision in 2011. I was suffering from carotid occlusion with intense headaches and syncope for 2 years before diagnosing myself by sticking my finger down my throat. I then found a surgeon with the help of the doctors I worked with. One of them got Edsel Kim, MD to agree to help me. I experienced immediate relief. Three years post op I started having pain around the carotid artery again. I was diagnosed with carotidynia and accepted that I had to live with it. At 7 years post op I sought treatment again for carotid pain, frequent choking, coughing, and vocal problems. Went through swallow study, upper endoscopy, pH monitor, imaging etc. Diagnosed with reflux and hiatal hernia. Treatment didn’t change the symptoms and again I accepted I had to live with it. The ENT knew I had ES and neither he nor I considered it at the time.
In May of last year I suffered a heat injury after an all day sporting event. It resulted in extremely violent vomiting. I had onset of left clavicle and rib pain and thought I had injured myself during the races or while vomiting. Over the next couple of weeks my ears became full, and I had pulsatile tinnitus and diminished hearing. I started getting sharp fleeting pains in my forehead, cheeks, inner ears, throat, and top of my head. My voice worsened rapidly. I awoke one night choking on blood and My RN daughter made me go to the doctor. I saw urgent care, an ENT, had a CT and they found no source of bleeding. It got me thinking about the styloids again. Separately I started PT for the rib and clavicle “injury.” One day during PT something she manipulated triggered the pain in a sort of chain from the ribs up through the clavicle, the aching in the ear and carotid, up to the ice cream headache in my forehead. It was an “aha”moment.
My daughter’s chemo patients are fond of Andrew Patel, MD in Portland, OR so I went to see him. After diagnostic injection, he did a right intraoral styloid resection in December 2024 but he didn’t want to address the left side due to scar tissue from my 2011 surgery and the added risk of an external approach. I had improvement in right sided symptoms and a very easy recovery because he spared the tonsil.
I came across this forum and as a result consulted with Ryan Osborne in Los Angeles. He ordered new imaging and confirmed by reviewing my imaging, op report and pathology from 2011 that my left styloid had grown back to about 3.7cm. I intended to have a left revision with him in May but I couldn’t overcome the financial hurdle because he isn’t contracted with insurance companies.
Because of my voice problems and at the time being unsure of who I could find to help me, I had a consult with Joshua Schindler at Oregon Health Sciences University voice clinic on the advice of Dr. Patel. The hope was he could offer something to improve my voice even short term because I’ve been unable to perform my job. He didn’t seem to believe that vocal cord problems are ever caused by ES. He said my right sided symptom improvement after surgery with Dr. Patel was purely coincidental. I was so caught off guard that I failed to ask him why he thought that. He said I had trigeminal neuralgia and cervical disc disease and need a spine surgery consult and headache clinic consult. I did not complain of c-spine pain or specific TN symptoms. He said the last person he operated on for ES had no improvement and he is going to be more conservative with ES patients going forward. When I got his chart note it didn’t reflect my history and there were physical exam findings that were not part of his examination of me. It took several weeks for the chart note to be finished. I used to wrangle a couple of doctors that were chronically behind on dictation so maybe that is why things were off but that doesn’t change the fact that his assessment and treatment recommendations were not helpful to me. Here is what was said verbatim: “Doc: Have you ever seen anyone with facial paralysis? Me: No. Doc: Do you know why? Me: No. Doc: Because they are so disfigured they become shut ins. If you keep pursuing this, that is what will happen to you.” To be clear, I’m attempting to remain factual and I intend to write him and give him my thoughts when I know more about my outcome. I waited for 8 months to see him and my intention is to prevent anyone from having false hope, in particular about vocal symptoms.
I’m happy to report that I had a bilateral revision with Trevor Hackman on 1/7/26. My facial nerves are 100% intact. I was completely confident in Dr. Hackman within moments of meeting him. It was evident he really looked at all of my imaging and understood my situation. He provided a detailed explanation of why my symptoms had returned and why the intraoral approach fails. Basically, scar bands form from the styloid remnant and anchor it to the scarring in the tonsillar fossa. He also pointed out I have no cervical lordosis which changes the orientation of the styloids to nearby structures. He didn’t mention it but I know that my very small jaw also has not done me any favors. I was having both carotid and jugular symptoms as well as multiple nerve and carotid sheath irritation. (I’ve been suffering from all symptoms related to vagus nerve function.) He explained why his approach provides a good chance of improving if not resolving my symptoms. He reports having treated about 200 Eagles patients and admitted he doesn’t know everything but individual anatomy appears to be a big factor in various presentations of the condition. Because of my two prior surgeries he was able to remove the styloids via an incision anterior to each ear. No neck incisions! I didn’t have much drain output so I only “slept” at 30 degrees the first night in the hospital. (I didn’t sleep. Too much activity.) My first meal was excruciating but I adapted my chewing and have done fine on a soft diet. I’m noticing a little more pain as I’m tapering the steroids but I think I only used a narcotic in the hospital and on post op night 2 in the hotel. Otherwise Tylenol has been fine. Despite being extremely cautious I came down with a cold so that’s been kind of unnerving to be coughing immediately after surgery. We flew home on day 3. My daughter arranged airport wheelchair service which I thought was overkill but she was right. I needed it. I wouldn’t recommend trying to travel alone.
Presently, I notice decreased pressure sensation in my head. My carotid artery doesn’t hurt as much and my anterior neck feels more free. My voice is very rough but I feel less sense of exertion and fatigue in trying to produce sound. I might be delusional but I feel like my cognition is feeling more normal, like the sense of chronic overwhelm is retreating. Chronic pain, vagus nerve, blood flow… who knows why but I feel hopeful. I know I have a ways to go but thanks to Dr. Hackman, I have a chance. He was the tenth ENT I have seen since my first symptom of carotid pain in 2009. Add a few ER doctors and family practitioners and it’s a lot of providers before getting here.
