Hello All, I’m researching surgeons and it seems that I don’t see ones focused on the neural aspect of an elongated styloid. The bios I read focus on vascular compression. Im in Washington DC and researching all of the prominent surgeons in the U.S. My scans and are “normal” according to my doctors at MedStar Georgetown University Hospital but how can they tell whether my nerves are being impacted? I have classic, vascular and neural symptoms snd my right styloid process is almost 5mm long and has a calcified portion. I don’t know what to do and am becoming disabled. Deteriorating. I’m on my own and have no help. It seems it will take months to even get a consultation. Im also concerned because Dr. Cognetti is the closest to me, but I’ve been told he has an aggressive approach and may do unnecessary shaving of C1 transverse process, which can lead to CCI.
I’m sorry that you’re becoming so debilitated by ES, that’s really hard when you’re having to advocate for yourself 
Imaging is difficult to assess the impact on nerves, so usually it’s based on symptoms you’re having. It’s not an exact science obviously as occasionally there have been members who’s neuralgia symptoms are caused by something else, but on the whole we know the nerves which are commonly affected by the styloids and surgery often improves these symptoms… There’s info in this section about common symptoms & what could be the cause:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I’m not sure which doctors you’ve researched, but from our experience, there aren’t that many who are experienced with vascular ES, most of the doctors on the list are more familiar with ‘classic’ ES and don’t check for vascular compressions…
Dr Cognetti does surgery for ‘classic’ ES, and has done for years, he has also in the last year or so started working with another surgeon to do C1 shaves where this is needed. I don’t get the impression that he’s aggressive with his approach to C1 shaving, but maybe others who’ve had surgery with him can comment. We have had lots of discussions about whether the C1 shaving contributes to CCI; usually just the tip of the C1 is removed, although some doctors like Dr Aghayev in Turkey removes quite a substantial amount of it and he believes that this doesn’t contribute to instability. We have had some members who’ve felt their neck is a bit more unstable, but many who’ve not felt this- sometimes after surgery things can feel a bit wobbly and unstady but then the body adjusts…
Dr Aghayev and Dr Costantino have done videos about this if you’ve not seen them:
Dr Costantino IJV compression and surgery - Symptoms and Treatments / Doctor Information - Living with Eagle
Information by Dr. Kamran Aghayev (Istanbul, Turkey) - Symptoms and Treatments / Doctor Information - Living with Eagle
If you do have vascular ES symptoms, we feel that it is better to consult with at least one of the doctors familiar with this, as if you see a doctor unfamiliar with it, they don’t always remove the styloid process close enough to the skull base to remove the compression on IJVs. There can also be soft tissues compressing the IJV as well, and the VES doctors generally check that the vein has re-opened & look for anything else causing issues. By removing the styloid close to the skull base, and as long as any other sections of calcified ligament are removed, this should be enough to stop nerves being irritated, so would resolve these symptoms anyway, you don’t need a different surgeon for those sorts of symptoms to a VES doctor if that makes sense?
The doctors that we know treat VES as well as Dr Cognetti are Dr Costantino in NY, Dr Lui in NJ, Dr Hepworth in CO and Dr Nakaji in AZ. Dr Lui and Dr Costantino have shorter waiting times than Dr Cognetti I believe, so might be worth trying with those?
But 5cms (if you mean that and not 5mm?) is certainly not normal, have you had a CT with contrast as well to assess blood vessel compression?
Thank you so much for your reply. I really appreciate it. I can’t express how helpful it is. I’ve been making phone calls all morning. I’m completely debilitated and bedridden from the severe head pain that never dissipates. I’m in the hospital right now in Washington DC and there are no Eagle Syndrome experts here so neurology is working on medication for the head pain. Attached is my screenshot of my report that shows 50 mm as the length of my elongated styloid process. Yes, I had CTV and CTA over the weekend at MedStar Georgetown University Hospital. They said everything looks fine and there is no compression of veins or arteries.
@contactsiri I was told repeatedly that there was nothing wrong but there was! I hope you reach out to a few of the doctors @jules provided. Dr. Liu is a neurosurgeon but I don’t believe he only handles IJV compression cases. I could be wrong but that was my impression.
Thank you so much for your reply and sharing your experience. Truly. I’m really depressed today. Very sick with severe head pressure/pain. I reached out to several doctors today. So far, Ryan Osborne is the most responsive office and I paid for a telehealth. Dr. Liu not available until early December and it will take time to get my images to him. Costantino not available until early January. … Im really sick. May I ask what doctor you went to? Were you on any pain medication until you could get your procedure?
@contactsiri I really do understand where you are right now. I was where you are for over six years, being told repeatedly that nothing significant was showing on imaging while I knew something was very wrong. It wasn’t until I had a second opinion through Stanford that the word Eagle was even whispered.
I ultimately went to Dr. Ryan Osborne and paid out of pocket for bilateral styloidectomies in December 2025. The surgery did help me. I had a noticeable reduction in facial swelling and it cleared much of the brain fog, but it did not resolve the debilitating pressure I was feeling in the back of my head and into my eye, and it did nothing to reduce the facial nerve pain.
After my bilateral styloidectomies, I consulted with Dr. Aghayev, who noted a bridged arcuate foramen. I then reached out to Dr. Liu specifically about that finding. Thankfully, he reviewed my imaging and offered surgery. Prior to surgery, he also noted that I still had IJV compression at C1. His approach was to address the arcuate foramen first and then see what symptoms remained, because depending on the outcome, reducing C1 to further decompress the IJV could still be warranted.
I had that surgery with Dr. Liu on August 11th. The difference in the back-of-the-head pressure has been significant, I no longer feel like someone is hitting me in the back of the head with a baseball bat. My head is also much clearer than it was before surgery. I still have pressure behind my right eye, right-sided facial swelling, and the never-relenting nerve pain. I am only two months out, so I am trying to stay optimistic. I am really tired of surgeries and it would be the third one on that right side.
Based on my experiences, this is why I would not rely too heavily on a report saying your CTA/CTV is “normal.” I would want the actual images reviewed by someone who deals with Eagle syndrome and vascular compression regularly. My experience has been that the interpretation can change dramatically depending on who is looking at the study and what they are specifically looking for.
Other than Tylenol and ibuprofen, I do not use pain medication except initially after surgery. I have been dealing with this for seven years, and I personally never wanted pain medication to become an easy explanation for my symptoms because medications can create their own side effects and muddy the picture. But my story is not yours, so hopefully others can offer suggestions for things that may help you manage the pain while you are waiting.
Since you already have the consult with Dr. Osborne, I would absolutely hear what he has to say, but I would still reach out to the other VES surgeons as well. I spent a significant amount of money based on the theory that cutting the styloid above the area of compression would be enough. In my case, I still have C1-level IJV compression and symptoms that appear to correspond with it, so it is now looking like I may have to go through another procedure to address what I had hoped would be resolved the first time.
Hi @contactsiri! I am so sorry that Eagles Syndrome has caused you so many horrible symptoms. I am in Pennsylvania, but I chose another doctor (the only one in Bucks/Lehigh County) who can do my surgery. He will be doing my right styloidectomy & ligament release on October 28th. While I haven’t had surgery with him yet, I am happy to share his info with you via message if you at least wanted a consult with someone who can probably see you sooner!
I am sorry to hear your condition is so debilitating.
Have you had a CT scan with contrast? That should show vascular compression. The scan you posted was without contrast, and it won’t visualize the blood vessels.
The CT scan with contrast should be timed in accordance with the venous phase of your heartbeat so as to visualize the veins. This is something to discuss with the ordering physician.
Certain anti-convulsant or antidepressant medications, such as gabapentin, pregabalin, carbamazepine, amitriptyline, etc. are sometimes helpful to reduce nerve pain and other neuralgic symptoms from ES. They don’t work on everyone, but for those that do the difference in quality of life can be substantial. (I am one such patient, for whom gabapentin has been very helpful).
I’d suggest trying to get your neurology team to try these meds with you. Be advised that some trial and error may be required to find a dosage that works for you.
In my opinion, surgery is the only really decisive relief for ES, but medications can give you back a lot of quality of life while you are waiting for surgery. Since your symptoms are near-disabling, meds seem well worth a try.
@callove @contactsiri Just to clarify, a standard “CT with contrast” is not necessarily the same thing as vascular imaging and could result in a routine soft-tissue CT being ordered.
The CT Scan that shows vascular structures is CPT code 70471 which is a CTA head/neck. The CTV is an additional protocol under the same CPT code but needs to be specifically requested by the ordering provider. Something like: CTA/CTV head and neck with arterial and venous-phase imaging to evaluate for vascular compression, including internal jugular vein compression
Please do share his information. I met with Dr. Osborne today and it went well. His focus is solely my elongated styloid/calcified stylohyoid ligament which I appreciated. We didn’t discuss other aspects of my symptoms. Thank you.
I am so sorry for what you have gone through. I can relate directly to a good amount of the symptoms. I can’t thank you enough for your entire reply and sharing your story. Extremely helpful. Sincerely. Thank you. It is what I needed… but now realize my hope in surgery with Dr. Osborne may not be enough. I can’t get in eith Dr. Liu for another 2 months almost. I too feel like someone is hitting me in the back of my head and on top and the sides. … I’m going to raise money for surgeries or take out loans. … Dr. Aghayev (sp)? I’m so overwhelmed that I missed that name. He does consultations? Is that Stanford? Im sorry, brain fog and overwhelmed.
@contactsiri - Dr. Aghayev is in Turkey but offers short, free initial consults & a longer consult for a fee which a number of our members have chosen as it’s a good way to get an opinion regarding your vascular situation but just as w/ Dr. Osborne, there’s no expectation that you’ll go to him for surgery.
•Dr. Kamran Aghayev - https://kamranaghayev.com
Link to set up a consult: https://kamranaghayev.com/online-consultation/
You are welcome to post some of your CTA/CTV images here, & we can give you our very experienced, but “we’re not doctors” opinions. If there are no 3D pictures among your CT slices there are a couple of programs you can use to convert your images yourself then post some here: radiantviewer.com (for PCs) & Bee Dicom Viewer App (for Macs). Here’s a link for guidance using RadiAnt Viewer, but sorry to say, we don’t have one for the Bee Dicom Viewer App: RadiANT DICOM Viewer tutorial
@contactsiri Since we’re getting close to year-end, before you start looking at loans I would also check your insurance options for 2027 if you have open enrollment coming up. If a PPO is available, it may give you more flexibility with out-of-state specialists and surgeons.
I actually did that last year. My company did not offer a PPO, but I suggested adding one as an option if employees who were willing to pay the difference in cost. By doing that, I was able to have surgery with Dr. Liu in-network.
I realize everyone’s insurance situation is different, but if you’re considering a consult with Dr. Liu and it’s currently about two months out, you’ll already be getting pretty close to the new year anyway and it does open up to other surgeons as well.
Dr Osborne has done many successful surgeries, and has been very helpful for diagnosing members too. However, he’s not as experienced with Vascular ES as the other doctors I mentioned before, so if you’re able to hang on for a consultation with one of them it might be worth it in the long run. We’ve had quite a few members who’ve had compression between the C1 transverse process and the styloid process, and it’s needed the C1 to be shaved to alleviate the compression, which Dr Osborne doesn’t do. I appreciate that you’re concerned about this, but if you just have a styloidectomy, it might not be enough to get rid of the head pressure, so you may need a revision surgery… There are some helpful tips on here for dealing with some of the head pressure and vascular symptoms in here if you’ve not seen it, for example some members have taken anti-coagulants which can help:
ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Dr Aghayev does online consultations so might be an option for you to get a better assessment of any vascular compressions (as many times we’ve seen members who’ve had this dismissed by radiologists as insignificant when it’s not). Dr Aghayev is probably the most ‘aggressive’ in shaving the C1 processes though if this is your concern.
Dr. Costantino is also aggressive with shaving C1 now as he has Dr. Tobias completely remove the transverse process of C1 believing that provides the best chance for the IJV open fully. Dr. Costantino also looks for & takes care of any soft tissue that is also contributing to compression.
I am so overwhelmed right now. I am also deeply grateful for all of this important information. Thank you to you and everyone!! I am unsure how I feel about shaving c1 abd aggressiveness in the context of reading about it: it’s important if needed but cam also cause CCI(?).
Thank you. I need this information. Lots to consider… aggressive lness, shaving the C1 processes and possibly causing CI are concerns of mine. I’ll have to research and figure all of this out. It would be good to get a consultation though. I don’t know how people afford all of this but I will be looking at different insurance for the new year and raising money. Thank you to you and everyone for helping me.
If I can make it until next year… I’m miserable. I am definitely getting a PPO regardless. Your advice is on point and I’ve been considering it since my hmo is an issue. Im sad to learn about Dr. Osborne surgery possibly not being sufficient and the costs alone are staggering. You’ve been so incredibly helpful as has everyone. I just got home from the hospital for my symptoms. I’m trying to get an appt with Dr. Liu, but having a hard time uploading my images because it’s hard to be on a computer (dizziness), only my phone is manageable. Each doctor has a different preference for images and if only they would allow Pocket Health that would make things easier. I’m working on it. How did you make it through so many years? I’m on my own and overwhelmed. I really appreciate your and everyone one’s help. I’m struggling and alone so this has been amazing.
I submitted a request to Dr. Aghayev. Thank you! I will try to convert my images to 3D. I would like to accept your "we’re not doctors” opinions. I had a video consultation with Dr. Osborne last night and he showed me the 3D version of my styloid process and that was fascinating I can’t believe how long it is. But he couldn’t address any of the compression issues or c1 tranverse process, etc. It’s hard for me to be on a pc but I will try soon to convert. Thank you.
@contactsiri - Do you have a friend, co-worker, neighbor or family member who could help you do the 3D conversion/computer work? That would be optimal so you don’t have to try to do it when you feel so awful. I hope there is someone who can be there for you!