Hi to all, I wanted to introduce myself and share some of my experiences with Eagles. I had been scanned via ultrasound, mri & ct in an effort to figure out why I was having swallowing problems, all without my styloids being mentioned. I got sent to a different place for a ct by our ent. Finally, they mentioned the elongated styloids and my ent looked at my scan and knew right away we had likely found the problem. But, he didn’t know how to perform the surgery himself. So he assured me he knew a REALLY good doctor in Seattle he could refer me to. I went to the recommended doctor only to be blown off. This supposed “so great” doctor said he didn’t think Eagles was my problem and ordered a swallow test for me instead of being willing to do my surgery. My ent had been clear that I needed surgery so I was devastated. I left there feeling I had no hope of getting help if he wasn’t going to help me. The ct had showed my jugular vein had 60% compression. My styloid on the left side was 8cm!!! Now that I know and understand Eagles I realize that he denied me a diagnosis and treatment because he really had no idea what he was talking about. Finding this site made me realize this is way too common. Tons of people who could be helped by a competent Eagles doctor are being denied a diagnosis and treatment because of the ignorance of the medical community due to the rarity of this condition. They don’t need to know I guess cuz it doesn’t come up much. I’m trying to bemoan this point because I don’t want people feeling discouraged because someone they trust or would expect to know says they don’t have Eagles. It is not at all likely most doctors even know what to look for. I have since had both my styloids removed. The surgeon (Dr. Ryan Osborne) told me that if the jugular is compressed you can pretty much count on the vagus nerve being compressed as they run together. Well, an angry vagus nerve can cause a bazillion wacky unexpected symptoms that most doctors would NEVER correlate to your styloids (ie: heart palpitations, tachycardia, bowel motility, GERD, swallowing problems, etc). They *may* relate swallowing problems to your styloids in the sense that there could be a physical limitation caused by them, but it feels next to impossible that they would connect swallowing problems to the vagus nerve being smashed by styloids. The swallowing test I had showed my muscle coordination was randomly out of sync, irregardless of the food I was eating, all the way down my esophagus. Most of the time it worked great, then a random time here and there - muscles would pause, then continue moving the food. Totally nuts! But that’s the kind of thing an angry vagus nerve can do. This Seattle doctor still couldn’t be persuaded that my massive styloids were a problem (the right one was 5cm, the left one 8cm - and also mine were SUPER thick near my skull .5 cm & 1.5 cm respectively). I couldn’t be more text book for Eagles. So don’t be discouraged when a really good doctor who *should* know better tells you that your styloids are not a problem. As far as getting a diagnosis, I have to say - schedule a consult with Dr. Ryan Osborne. I was able to get in to see him and Dr. Samji FAST via a virtual appointment. They both were so reassuring that I needed and could get help. If I remember correctly, Dr. Osborne’s consult fee was $250 and Dr. Samji’s was $500. Having this settled that ‘yes I have Eagles’ made going forward much easier. I no longer scheduled appointments with timidity, being at the mercy of what the doctor might say. I knew from them and from this site what I needed so I called doctors obsessively looking for one in my state or a connecting state stating “I have Eagles Syndrome, I need trans cervical surgery, can you help me”. I knew I wasn’t a candidate for trans oral surgery due to the massive size of mine. Knowing what I know now, I’m shocked that doctors will do trans oral. You can’t see what you’re doing!! These nerves, veins and arteries are valuable real estate! I knew I wanted a doctor looking at exactly what he was working on on me and I knew I needed to be cut all the way to the skull base, as I could see from the ct that the compression was almost to my skull on the left side. I never found a specialist close to me that could do the surgery I needed. The Seattle doctor eventually conceded that he would be willing to take *some* of my styloid out but wouldn’t go to my skull because of the nerves that are right there, he didn’t want to mess with them. Well, his timidity, which I was glad he expressed, told me I didn’t want to mess around. I wanted someone with EXPERIENCE because I didn’t want those nerves harmed, if at all possible. I somehow had the understanding that Dr. Osborne had done a ton of styloidectomies and had never left someone with permanent nerve damage. Idk if I saw that on his site or what. But first before deciding for sure to go with him, I needed confirmation that, though I had jugular compression, that I didn’t need a vascular surgeon. Dr. Samji and Dr. Osborne had the attitude of, “get that thing out of you and see where you’re at”. While I liked that attitude, I still had to investigate the vascular direction. Well, they were right. Dr. Nakaji in Arizona & Dr Aghayev in Turkey both agreed I just needed my styloids removed. Dr. Aghayev said he would likely do a c-1 shave while he was in there to be extra sure my jugular decompressed. Both of those doctors also did everything virtually that I needed. My local ent ordered the ctv for Dr. Nakaji. Dr. Nakaji reviewed it and said I didn’t need him. That was great news! At all of these places, everyone I needed to work with was soooo helpful. They had very helpful & communicative staff to help me along with what I needed to do. The worst staff and doctor experience I had was Dr. Patel in Oregon, I would encourage people away from there if I had the opportunity…that’s a whole other story. Anyway, after confirming I didn’t need vascular, we soon scheduled with Dr. Osborne at the Osborne Head and Neck Institute in Los Angeles. He was able to get me done quite fast. My initial consult was March 12, my first surgery was April 28, my second was May 1. My first surgery, the 5cm one, was super easy peasy. I say this because I think this would be the norm for most people’s experiences with Dr. Osborne. He is meticulous! He does four plus styloidectomies every week. He has been doing them for over 20 years if I remember correctly. Dr. Osborne had set out to be a cancer head and neck surgeon because he wanted to do work that would make a big difference in people’s lives, which he has accomplished. But the demand for Eagles surgeries caused him to rethink his direction. He realized that Eagles surgeries were accomplishing this goal of helping people in a BIG way. And that while most hospitals have cancer centers, people don’t really have readily available help for Eagles. So he decided to make himself more available, to such a degree that he actually will turn down cancer surgeries unless they are complicated cases that others won’t do so that he can give himself to help people like us. He specializes in it as one of his top priorities of patients to take care of. He, unlike the Seattle doctor, is VERY comfortable with working around the nerves and doing skull based surgeries that require moving and messing with those nerves. My left side surgery, after going through it, I’m SOOO glad that he was the one who did it. Someone with less experience could’ve made a big mess of me, not knowing what to do once they got in there. Dr. Osborne was right at home and ready for the challenge. My left side was a very rare difficult situation due to its size. It needed to be extracted from nerves, tissue and muscle (which is normal but not normally to that length & width). I was warned that I would likely have a lot of pain. I didn’t. It was harder on my body - the surgery was five hours. Considering the magnitude of the surgery, I came through with flying colors. I was prepared for some serious ramifications, but there were none! I did end up with some angry nerves which, as of three weeks post op has almost totally resolved. My swallowing difficulty that started this journey appears completely resolved. The freedom I have to turn my head to the right and left makes me want to cry from joy. I did not realize how inhibited I was! I feel like walls were removed from my right and left side of my head. I had subconsciously made so many accommodations to my life without even realizing it! Another thing I learned from Dr. Osborne that I think is important…the idea of a certain length being regarded as a diagnoses criteria, he said that is totally antiquated and he wished it would be done away with. He said being able to see the styloids on ct now, and especially 3d images, makes it a total game changer because we can now see very well what is going on with the styloid and see what it’s messing with and its not about length but about what’s going on in that individual person. People that need help won’t necessarily get the help they need if they don’t meet this antiquated length criteria that’s still being implemented.
As an added note, I wanted to mention, we belong to Christian Healthcare Ministries (CHM). When I approached them about my surgery and them paying ahead of time, they were happy to cover my expenses for the procedures. They supposedly transferred the payment to Dr. Osborne’s clinic the day before each surgery. Once they approved him, I was pretty much out of the loop - they, between the two of them, took care of all that. They said he had such an excellent reputation and they were happy to pay him to do my surgeries.
Another note, I’m so impressed with the work of the moderators of this site. They give so much of themselves for all of us - in order to help anyone they can to get off their path of misery. When I first began my investigations, with those massive styloids in me, being on the computer was so aggravating. I would try to learn but it was like taking a crash course in Greek, I just couldn’t get all the pieces together. One of the moderators, Isaiah 40:31, took the time privately to just pour in to me all the information I needed. And even still continues to do so. I needed a different format to get the info in me since being on a computer was so awful for me and she was willing to oblige. She’s a wealth of knowledge, understanding & wisdom. I don’t feel like I could’ve done it without her. She knows all I needed to know and was constantly being called on to help me again and again and she never shrunk back. She’s so smart, I told her I feel like I have my own personal on-call doctor, one that really cares and never grows weary. I know everyone really appreciates all the input from her and Jules, and rightly so!
I’m sorry! That’s awful. You have probably been asked then, have you had imaging to show if the compression was released? Cuz for me this was critical that mine be cut right to the skullbase…see the picture below, where I circled at was the spot that was crushing my jugular and my vagus nerve. Doctors told me they were timid about going that close because of a major nerve right there. Dr Osborne, when I showed him this, said “that’s what I’m intending to do”. And he did, very carefully. I knew the surgery would be pointless as far as my vagus symptoms went if it wasn’t cut above that knob! You probably already investigated this path, but I wanted to mention it just in case. Dr. Osborne has to come in a lot and finish up the removal other doctors didn’t accomplish. It’s just the nature of this condition, it’s rare enough that people aren’t doing a ton of them and may not feel comfortable to do the full gamut. I hope this helps. I know what you’re going through is hard.
LOOK AT THESE?! 7.3cm & 4.1cm. I’m mortified that these long boys decided to be overachievers in not only length, but GIRTH. LOL! I have to laugh at this point. I had an extremely informative consult with Dr. Osborne today. I truly appreciated how candid he was. He said, “I am shocked you’ve been rolling around like this.” And quite frankly, I am too. But my symptoms are definitely getting worse, especially the past 8 months. The dizziness & lightheaded feeling is becoming a major problem. I am otherwise very functional as long as I manage my stress & lifestyle well…however, it’s definitely becoming more difficult to ignore and I’m seriously concerned and my quality of life continuing to decrease. The ringing in my ears is SO LOUD.
