My Story

First, a thank you to all of you who have posted your stories here, and have helped so many who are seeking for relief.

I live in Canada and have had Eagle Syndrome symptoms for at least 4 years now. I have it bilaterally- with 6 cm on the left, and 4.3 on the right. Because of a car accident many years ago, I ignored my neck pain and assumed this was my whiplash worsening. I then began having left sided weakness and TIA symptoms. I was hospitalized in the cardiac unit, as I have also had palpitations, and during a particularly troubling episode of palpitations and shortness of breath, an arrythmia was found on an ECG. During my hospitalization, I noticed that my chest symptoms were always precipitated by a buzzing feeling in my neck. The doctors found this odd, but when my heart checked out ok and the abnormal rhythm never returned, I was released.

I have been to many specialists, and eventually was told that my symptoms must be stress. I insisted this was PHYSICAL, but was not heard. I was referred to a psychologist. After time, even those close to me wondered what was going on when all of my doctors ignored my ongoing symptoms. The symptoms only worsened. I began having trouble swallowing, having neck and face pain, and the intermittent weakness/tingling on my left side continued. Sleep was so difficult- as moving my neck to the left made me feel like I was going to pass out.

Finally, just over a year ago, my family doctor referred me to an ENT. I had discovered a hard lump behind my ear that was painful, and seemed to be related to my other symptoms. When I saw the ENT, she suggested we rule out eagle syndrome, indicating the likelihood was next to zero- but that we should just do the CT in case. A month later, I learned that I do in fact have Eagle Syndrome.

I was shocked- and scared- but also relieved, thinking that I finally had an answer, and logic would mean that I also had a solution.

That has not proven to be the case.

After 2 neurologists and a neurosurgeon (none of which have seen ES), it has been determined that they cannot prove that my symptoms will improve if I have surgery.

Finally, because of posts I read here, I decided to pay out of pocket to see a dr with experience. I saw Dr Cognetti in Philadelphia. He was very kind and professional. I explained that my concern was really about having the vascular form of eagle syndrome. I asked him if he had ever done surgery on someone with vascular symptoms, and he said he had not. He has recommended surgery, and is willing to perform it. I am still debating about going ahead with him because of his ES experience- but I am concerned due to my vascular symptoms (I now have orthostatic imbalance, wake up with my left arm asleep routinely, and have pulsatile tinnitus, etc) that I should have someone do the surgery that is prepared for any vascular complications.

My situation is complicated by the fact that I had a severe reaction to contrast dye several years ago, so my images do not indicate whethere there is vascular compression or not. There was an attempt made at a carotid ultrasound, but the technician couldn't keep the wand on my artery while my head was turned. Again, these hurdles have made my doctors here in Canada hesitant to act.

Honestly, I am becoming more concerned about inaction than any non-relief of existing symptoms following surgery.

So, at this point I have contacted Dr Snyderman in Pittsburgh. He will have just received my chart. I understand he has a background in neurology, but is also an ENT. I am praying he will know what to do for me.

I have been on a quiet emotional rollercoaster. I know that if I let myself become too worried, that I will only feel worse. I keep going each day, but that is becoming increasingly difficult. Exertion causes symptoms, and that is really tricky. I used to be very active, and loved to golf, jog and play sports. I can no longer do that. I so hope that the active part of my life will return one day soon. I am 43, a mother of four, and have so many blessings in my life in spite of this challenge.

I have been following many of your stories over the last few years. I've done so without sharing my story, and also my gratitude for those of you who share so much of your struggles with us. Your courage and hope have strengthened me- and your frustrations have taught me that I'm not alone. I can't thank you enough.

I can't wait to hear about the upcoming surgeries, and I especially want to hear about those who have seen- and will see- Dr Snyderman.

Here's to better days ahead!!


Maybe this will help....

I would be considered a vascular case. My scans show elongated styloids and jugular compression. The echo showed some carotid compression on head turning (you're right...that was a tricky thing for the tech). My doc said that he would go through the neck with vascular Eagle, because it is safer for him to do so with the jugular and carotid being in such close proximity.

My doc is also hesitant because it makes sense that the styloids are causing the compression, but it's very hard to prove that removing the styloids would alleviate my symptoms, many of which match yours (incl your palps). he wants more definitive proof that the styloid is causing problems before he feels good about doing surgery.

One thing that was suggested was to thread something (I can't remember what it's called) through the femoral artery up to the jugular. There, pressure would be measured on both sides of the jugular, where it crosses the styloid. If there is a pressure differential, my doc thinks that this would give more definitive proof that surgery is warranted and likely to be effective for my symptoms. I'm not sure whether this sort of thing would be an option for you, since you cannot use dye. Also, I guess you don't know if you're talking carotid or jugular compression, so I don't know if that procedure can be used on both.

I wish you many ANSWERS and speediness in finding relief :)

Thanks so much. I'm going to ask about that procedure next time I see my doctor. I find it so odd that in a case like yours, where compression is visible on your imaging, that surgery wouldn't be expedited. It seems to me that the risk of leaving the styloid compressing important organs is far greater than the surgery itself. I recognize that the surgery is not risk-free, but from what I have read so far, its quite do-able. So many seem to have relief, at least from the more troubling symptoms. I hope you get help soon too!

I guess I think of it like this. If we know there's a bony projection in our necks that doesn't belong there, and we're getting severe pain, neurological and vascular problems, and all sorts of compression-related issues, then why don't they just remove it?? I'm struggling with the concept of having to 'prove' its not something else, instead of dealing with 'what is'. I am beginning to interpret the hesitation as a lack of experience- at least with the doctors I have dealt with.

Having said that, Dr Cognetti has offered surgery, and I'm thankful for that. I just really want to be sure that the full picture is understood by whoever performs it. I'm particulary concerned about vascular/neurological complications, and hope for someone who deals with these issues routinely.

Thanks for being in touch..


I think it comes down to ....risk vs unknown, rather than risk vs reward.

The compression is LOOKs like it's at the styloid level....but is that really what is causing my symptoms, is the question. I've tested for most other possibilities, but have a couple more to go to get the most information that I can to make a decision. I've had these styloids for a long time...I want to know why I have symptoms that were only really in the last 6 months.

I am with the doc on this one; I can actually call the card at any time and say, "Let's do surgery," and he agreed that he would do it if that's what I decide. However, I see a lot of risk for no guarantee, too. I am wary of the nerves and proximity to vessels. I know there is a possibility of not only NOT relieving the symptoms, but of also CAUSING some that I don't currently have.

I am not in the high level of pain that many people here are. I have nasty headaches, but I can deal with those and the other stuff to investigate further. So, really,the doc and I are on the same page...I want more proof, too.

I think it will come down to your doctor and his style; if you had my doc, it sounds like you would have the final say as to whether to go ahead with surgery, extra proof or not. If you want those bones out, and they are elongated, I think it's a matter of which doctor you find. Some will say, "No, I want more proof," and others will say, "Here is my opinion, but ultimately it is up to you." :) I hope you find the perfect matchup!

I think I understand what you're saying. I can see why you'd want to know for sure that your styloids are causing your symptoms before going ahead. I guess for me, I feel confident that the vast majority of my symptoms are from ES. After reading so many other peoples' experiences on this site, I feel even stronger that way.

I'm troubled by the blood pressure issues, palpitations, pressure in my neck when straining/exercising, visual disturbances, etc. The list of symptoms is so long, and the severity seems to just grow stronger over time. I too have concern about the surgery results- but lately my concern about staying this way, or getting worse- trumps that concern.

I'd be interested in hearing your symptoms when you have time, and if you don't mind sharing.

Thanks again for your responses- its so nice to communicate with someone who has first hand experience and can understand!!

Take care...


Sorry you are having difficulty finding a doctor to help you. If you are willing to travel to the States I highly recommend Barrows Neurological institute. Dr. Cognetti is a rock star but I do understand your concerns. I will enclose an article concerning vascular issues. They have skull base ENT and Neurologist. Dr. Nakaji is one of the doctors that wrote the paper. The next 2 are about Barrows. I hope you get answers and help soon.

I have an appointment with one of the ENT's that is one of Barrow's skull base surgeons and would like Dr. Nakaji to assist if there are vascular issues. I hope you do not mind me sharing my recommendation on your blog. You need to do what is best for you.

I feel that you know your situation and I know that we are all little research nerds :), so I have no doubt that you know exactly what you need to do.You really only need someone to work with. I have confidence that 'your' docs are out there, and you will find one.

We will be reading your surgery story; it's only a matter of time. I sure wish you could take the dye...ugh it helps so much...I never thought about it, but I guess there are no other options for you to 'light up' the vascular stuff on a scan. If that's the case, man-- that is frustrating! Too, I think that procedure I suggested needs dye, too....I just briefly looked for what it might be called, and was disappointed that I suggested it to you when it might need the dye, too. I think it's called a catheter venography- but I'm not 100% sure because I briefly tried to find the name of it, and didn't spend a lot of time making sure that is the name.

Boom- your symptoms are very very similar to mine. I will message you them, as I want to keep this blog all about you; your experience is helping me, too. For example, you just wrote, 'pressure in my neck when straining/exercising', and that practically made me jump out of my chair with ....I guess you could call it excitement? Enthusiasm? ...because that is something that I have, too-- yet so few seem to describe that one.

The list of symptoms is such that (oooh I bet everyone here can relate to what I am about to say), you wind up telling the doc your history and symptoms, and at some point they interject, and ask a question and move on to a physical exam or something, are not done yet telling your symptoms! You've given them only like 4 symptoms out of 12 or whatever. So now you're in this weird spot of interrupting the process to go back to the history (darn, now the doc has put that pen down and the folder is closed), and then you hear yourself sounding like you're naming every small anomaly to your physical self.

So... next time, you consolidate your list to the 'most important' symptoms...and gradually you wonder if by not mentioning a symptom, you're inadvertently missing an important one that the doc might really need. Who can relate?!

So, that was a lot of words that are really saying this: it helps me to hear you say your symptoms, so that I realize which might be Eagle related, and which might just be another thing that isn't an Eagle concern. :)

I looks like she was part of publishing this medical journal report on ES. I included the link.

Maxillofacial Surgery

Dr. Lesley Diamond

350 Conestoga Blvd.
Cambridge, Ontario N1R 7L7


Hope this Helps


I dont know if you read this post but it has some medical journal links that talk about some of the symptoms you are having. You may find it helpful.


Big Bugs, thank you for sending along recommendations for doctors. I'm going to read up on them tonight and see if it sounds like a fit. For now, I think I'm going to be seeing Dr Snyderman in PA. If that doesn't work out, I'll have to keep the search going. My biggest hope is to find someone who understands the vascular side of this illness, and has confidence in performing the surgery in spite of those possible implications. Also, I want to find someone who will take the whole styloid, so that it doesn't grow back and continue to wreak havoc.

RB, thanks for those links! Thats the first time I've seen an ES article authored by a doctor from Ontario, so that is fantastic! And now I know that there are at least 5 patients who have had their styloids removed locally as well, which is great- and really surprising. I have been searching for a long time! I'm going to put a call in to this doctor. I did notice that there was no mention of vascular issues, but hopefully she is aware of those.

And Tee, your comments about going to the doctor and feeling like they mentally check out half way through the list of symptoms is bang-on what I have gone through. I can understand it to a degree from the doctor's perspective- but I feel the same way as you. What if you don't say something that would have been a real indicator for them about what is happening? I sure wish the symptoms were more obvious for doctors- I hope one day in the future that other people won't have to self-advocate so much when they are suffering like this.

I have to say- its great to find others who understand both the symptoms, and the difficulty in finding the needed help.

Thanks for your comments, everyone~



Did you see my post



I got that information from a lady who son have vascular ES who lives in Australia and who has medical connections because of an organization she is with, "doctors without borders". I don’t want to give too much info as she said she was going to stop by and possibly post. Any way this doctor is one she highly recommends, and is sending her son too.