Thank you to everyone for sharing their stories. It is incredibly helpful to know that we are not alone in what we are dealing with. It is so easy to feel discouraged because so few doctors understand the complexity of Eagle’s Syndrome.
Here are some screenshots of my CTA from last summer. Would love to hear thoughts on them.
Just getting someone in Canada to look at the CTA and understand if I have Vascular Eagle’s is challenging.
@Parkside I am no expert here but that sure looks pretty compressed to me! Sorry you are going through this I hope you find help soon!
Thank you @MGORNEAU. My only education in all this is looking on this site and at medical papers on the web about Eagles. It’s a journey unfortunately as people here all know.
Welcome @Parkside. You will find so much compassion and solidarity here!
Those are impressive styloids! I’m sorry that I can’t label the images for you, but you have Internal Jugular vein compression both sides, between the styloid process and the C1 process…it looks like the C1 process is quite involved in the compression, so I think you might need a C1 shave- not doctors on here obviously, but trying to steer you in the right direction of which doctor to see… Unfortunately there don’t seem to be any doctors in Canada who do C1 shaves, other Canadian members have travelled to the US, some to Turkey. Is that at all an option for you?
The doctors in the US are Dr Cognetti in PA, Dr Costantino in NY, Dr Lui in NJ, Dr Hepworth in CO and Dr Nakaji AZ. Others have seen Dr Aghayev in Turkey. Here’s a link to the Doctors List:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Some doctors do online consults if you send them your scans, so you wouldn’t have to travel for initial appointments.
Thanks so much Jules for your comments and guidance. I am trying to avoid travel, but I may have to in the end.
I had an appointment at the Brain clinic last week and was again told I don’t have Eagle’s even though I asked them to specifically read the CTA for space between C1 and styloid process. I don’t think they looked or if they did, they did not know what to look for. Truly at this point I am at the 
stage. They have sent me onto a pain clinic for the sub occipital, neck and shoulder pain and to a sleep specialist. They are not looking at root cause of all of this. And while those new appointments might be temporarily helpful, it’s not going to fix things
Your message brought mist to my eyes, to finally be seen for what I have been experiencing. I know you are not a doctor but you have seen enough scans to recognize when compression is happening. I wish that when the neuroradiologist who read my CT scan 2 years ago and noted the elongated styloids, that the doctor who had requested the CT in the first place would have followed up then, but again lack of knowledge I’m sure on their part prevented that.
The challenge is getting the education out there so that more doctors know about all the complexities of Eagles.
thanks for the support Jules.
Jules, if I do have to travel for this surgery, I would want to get both sides done at the same time. Of the doctors that you mentioned are there any that would do both at the same time?
And is there a reason why it wouldn’t be a good idea to get both sides done at the same time?
I have another question Jules. You said that my styloids were “impressive”. Can you elaborate on what you are seeing? Thanks! 
Thank you lsheep. It sure is a journey isn’t it.
The only vascular decompression eagle’s doctor I know of performing bilateral decompression is Dr. Aghayev in Instabul. In my opinion, that much surgical work beyond styloidectomy alone should be spaced out at least 3 to 6 months even a year. Temporary nerve dysfunction is common and the theory against bilaterial goes that if you lose swallowing, speaking, mouth, shoulder movement on one side you need the other to get you through the first healing. If you do styloidectomy alone, Dr. Osborne and Dr. Hackman offer bilateral or within a few days between each side. Did the radiologist report note anything about your jugular compression? You posted some good slides of your scans and it does appear you have compression, but might also be helpful to also download a 3D program to see your CT scan and folks here can help you take a look at your vascular structures, styloids, etc if you share screenshots. Here’s a video how to use the RadiANT version: https://youtu.be/WQ0kTHYyoCo?si=8wWLEBM-IvVjhoHR
@Parkside - I’ve annotated a couple of your images so you can see what’s what. Your right styloid extends beyond C3 & your left one to C3. They’re very long so I totally don’t understand how any doctor could look at your imaging & not realize they would be causing problems. It’s just not normal for styloids to be that long!
@SCJeff has given good reasons for not having bilateral surgery done all at once, but if that’s the only way you can afford to have your situation taken care of, I can tell you that we have an increasing number of members who are having bilateral surgeries done by Dr. Aghayev in Turkey & no one has had a critical, life threatening situation post op.
The suboccipital pain you’re experiencing is most likely coming from collateral veins that have developed in your occipital area to help the IJVs drain blood out of your brain at a more efficient rate than they can while being as compressed as they are. Neck & shoulder pain is likely from your styloids irritating your spinal accessory nerve. A prescription nerve pain medication could help w/ the neck/shoulder pain while icing your neck/occipital area for 20 min. several times a day could help reduce that pain. Use a thin cloth between skin & ice pack to prevent ice burns. Sleeping w/ head elevation (you’ll need to experiment w/ how much elevation helps) can reduce headaches & pressure. Getting an Rx for a blood thinner such as Brilinta, Plavix, Xarelto, or Acetazolamide can be helpful in reducing head pressure/headaches as well.
I hope now that you’re learning more about your situation, you’re able to progress more quickly to getting the help you need.
Thank you @SCJeff! Those are good reasons indeed to not have both sides done at once.
The original mention of Eagle’s was on a CT report in 2024 done for my sinuses. It was an incidental finding noted at the end: “Elongated right longer than left styloid process which may predispose to Eagle’s.” No follow-up on that was done by either the ordering doctor or my GP. And I didn’t know any better. it is only when doing some research on different venous compression issues regarding someone else that I stumbled upon the term Eagle’s and remembered seeing it in one of my reports that prompted me to go and look at the CTA I had done last September and start googling and trying to understand it all.
Recently two doctor’s have told me I don’t have Eagle’s. I am not sure they even looked at the scans before saying so, but I can’t be sure. Their answer was just very quick. I’m not sure how much they learn about Eagle’s in medical school, but I imagine not much given my experience.
Sorry if I sound cranky and cynical. I am just tired of being told my tests are all fine and it must be anxiety and depression. Of course I could have anxiety and depression from not being listened to!
@Isaiah_40_31 thank you so much for annotating the screenshots. It confirms what I suspected, although I didn’t know I had ridiculously long SPs. I don’t know enough about calcification of ligaments with Eagle’s to be able to identify it. Did you see any indication of that? I am sure you would have noted it if you had.
Honestly I am not sure any of the doctors that have said, in the past month, that I don’t have Eagle’s, have actually taken the time to look at the scans. The one neurologist who did, admitted they were not a radiologist and really didn’t know what they were looking at. Her supervisor just said quickly it is not Eagle’s and I couldn’t get a word in edgewise. When I finally do get the correct diagnosis I am going to be sure to have them all cc’d on the report, in the name of further education about Eagle’s.
Thank you for the suggestion of Dr. Aghayev in Turkey. That would be such a long way for me to travel and I am not sure I would be up to it at this point. My health has declined so much in the past couple of months. The daily tasks of living are a chore and if I get just one accomplished a day I feel that is a win. (Apparently folding laundry isn’t one of them! 
) And I have read of 2 critical post op situations here in Canada so it makes me so nervous to go out of country, but also very nervous to stay here and have it done. Rock and a hard place. New Jersey/NY/Eastern Seaboard seems like a do-able trip for me. I just have to figure out how to finance it all as well. I don’t know if any Canadians have been able to get their provincial health care to cover the expense.
Thank you for the medication suggestions. I will speak to my GP about those. I used to be on Celebrex (for another reason) and found it helped. Have any others in the group found the same thing by chance. Maybe it was just co-incidence. I am on 1500 mg of gabapentin a day and my doctor just gave me a prescription for a compounded medication of gabapentin and lidocaine for facial pain I am having related to trigeminal nerve damage from a fall I had last year (thus the CTA).
Again, many many thanks. I can’t say it enough. So grateful for this community.
I’m astounded that it was dismissed by the doctors you’ve seen recently, that’s crazy!
@SCJeff suggested a couple of doctors in the US - Dr Osborne and Dr Hackman- both are great surgeons and have done lots of successful surgeries, but neither are Vascular ES surgeons and neither do a C1 shave. You might get a relief of symptoms without this, but given that you’re potentially paying for the surgery and would have to travel, then I think it’s worth getting the best chance of success and having it done right first time… so it sounds like you might have to have just one side done at a time, as the East coast doctors on do unilateral surgery… As far as we’re aware, none of our Canadian members have managed to get the funding for surgery in the US, it’s crazy as there’s no option in Canada! We are seeing more doctors doing bilateral surgery now, so although many like to leave it for a few months, it does seem to go well for quite a few members!
I hope you’re able to try one of the medications that @Isaiah_40_31 mentioned. If you’re not already sleeping propped up, that can help so is worth a try.
Incidentally, as you mentioned TN, @Hellebore posted a link to this research paper yesterday:
IJV Compression - a cause of trigeminal Neuralgia? - General / Research Papers - Living with Eagle
Styloids most often elongate along the stylohyoid ligaments i.e. the ligaments calcify giving the styloids an appearance of elongation when in actuality, it’s the s-h ligaments themselves that have calcified from the point where they attach to the styloid & going down toward the hyoid bone. A few of our members have had the opposite i.e. normal styloids but calcification of the s-h ligaments that starts at the hyoid bone & grows upward toward the styloids. Another group has both the styloid elongation then a gap & then either spots of calcification intermittently along the remaining s-h ligament OR calcification growing from the hyoid end as well as from the styloid end with some non-calcified s-h ligament in the middle. Regardless of the form it takes, excess calcification in that area doesn’t belong there & generally causes symptoms of one sort or another.
