Mayo says ES is "controversial"

So can we live with this 'bone' calcification or does it have to be removed. My ENt doesnt seem too concerned. :( Can this cause a stroke or death? Im freaking out. SO scared and tired. I read it can be from vitamin deficiencies. Is that true?

Yes, you can live with it- that seems to be the option preferred in Uk anyway, but it does depend on how bad the symptoms are, and the type. No Doctor obviously had vascular ES so the styloid was causing a problem with his carotid artery- with vascular ES there is the risk of a stroke so then removal is necessary. I don't think they know what causes it- my Dr insisted it's something you're born with and didn't believe that they can grow!! I've never heard it could be down to a vitamin deficiency.

Yes dkel9307, I just hope my story with ES helps others who are suffering with this terrible problem.

Lisa - as Jules said, yes you can live with the styloid process, and yes mine was the vascular form of ES which is potentially deadly. Am I saying yours is a vascular form that is deadly - not at all, but I would find a doctor who understands the potential problems associated with the vascular form such as a vascular neurologist or an interventional radiologist (anyone that reads the scans themselves and doesn't rely on a "regular" radiologist's report) and ask specific questions regarding the proximity of the bone to the vital structures that pass through the neck. I would think one way in distinguishing the two forms is where the pain is located. All the pain I had was in my neck along the distribution of the carotid artery and I never had pain in my throat. I don't mean to scare anyone but the truth is that if you know you have elongated styloids then you need a knowledgeable doctor to evaluate whether it's potentially vascular or not. My ENT relied on the vascular doctor's opinion regarding this. Also, keep in mind there are numerous other things that run through the neck near the carotid such as nerves, large muscles, etc that could be causing the pain and have nothing to do with the carotid. Hope this helps.


what I dont understand is wouldnt my ENT know if mine was vascular by the CT scan? Im so scared Im gonna have a stroke. My calc appeared a year after starting to take high doses of Vit D. I malabsorb fat soluable vites (ADEK) so I have to take high doses. Well I read that if you're deficient in D mag or k (which I was) you can get soft tissue calcs....then I read too much of one can lead to it also. There has to be a good balance. Finding that balance is hard tho. :/
Jules said:

Yes, you can live with it- that seems to be the option preferred in Uk anyway, but it does depend on how bad the symptoms are, and the type. No Doctor obviously had vascular ES so the styloid was causing a problem with his carotid artery- with vascular ES there is the risk of a stroke so then removal is necessary. I don't think they know what causes it- my Dr insisted it's something you're born with and didn't believe that they can grow!! I've never heard it could be down to a vitamin deficiency.

Lisa, I wouldn't worry to much about what caused the ES. It's really moot at this point. What has the ENT said about your CT scans? Do you have constant neck pain around the carotid artery? I think the vascular form of ES is rare even considering how rare ES is With that being said, I would find a vascular neurologist or a interventional radiologist if you are concerned about vascular involvement. I hope I haven't made things worse for you by mentioning my bout with ES, but if you suspect vascular involvement then I would find someone knowledgeable and seek their advice. Have you had any stroke symptoms? I'm sorry you are having such a hard time. I wish you the best in your search for answers.

Lisa said:


what I dont understand is wouldnt my ENT know if mine was vascular by the CT scan? Im so scared Im gonna have a stroke. My calc appeared a year after starting to take high doses of Vit D. I malabsorb fat soluable vites (ADEK) so I have to take high doses. Well I read that if you're deficient in D mag or k (which I was) you can get soft tissue calcs....then I read too much of one can lead to it also. There has to be a good balance. Finding that balance is hard tho. :/
Jules said:

Yes, you can live with it- that seems to be the option preferred in Uk anyway, but it does depend on how bad the symptoms are, and the type. No Doctor obviously had vascular ES so the styloid was causing a problem with his carotid artery- with vascular ES there is the risk of a stroke so then removal is necessary. I don't think they know what causes it- my Dr insisted it's something you're born with and didn't believe that they can grow!! I've never heard it could be down to a vitamin deficiency.

No I havent had stroke symptoms but Im just so scared and overwhelmed. The ENT says its not that big and I'll be fine, but he cant do surgery as its too close to the main artery. I get pain in the back of my throat where this bone is..its right under/behind the right tonsil. Is that where yours and everyone elses is? I also get pricks of pain, lil sharp jabs every now and then, down the side of my neck. I DO have DDD in my neck tho...so maybe thtas from that? Or maybe from my thyroid disease? :TOO much to worry about and docs dont help. ENT said Im a mystery. So how do they test to see if its vascular? Would that be on the CT scan?

Maybe it's time to find a new ENT or even better a vascular neurologist to rule out vascular involvement. It seems to me that anytime they do a styloidectomy through the neck they are going to be close to a lot of arteries, but ENTs remove tumors and such all the time that I would think would be much more difficult than the styloidectomy. My ENT, to my knowledge had never done the procedure but said I do surgeries in the neck all the time and honestly that bone probably gets in the way for most other surgeries they do. Everyone's bone grows at a little different angle, length, etc. I would agree that the overall length has something to do with it but it would seem to me that at some point it's not about length but about the angle the bone is growing and which nerve, artery, etc is in its path. Mine deviated down my neck and therefore was in contact with the carotid, but wasn't as long as some other people I've read about on this forum. I had no pain in the area you describe. The pain I experienced was about two inches below the area between my ear and jaw and it never went away (basically where you feel the pulse in your neck). If your concerned about the vascular aspects, I would highly recommend a knowledgeable vascular neurologist and see what they have to say. Mine was diagnosed by CT scan. So, yes it should be on the CT scan and it maybe that the ENT knows there is no issue, but if you want a 2nd opinion then like I said I would find a vascular neurologist.

Lisa said:

No I havent had stroke symptoms but Im just so scared and overwhelmed. The ENT says its not that big and I'll be fine, but he cant do surgery as its too close to the main artery. I get pain in the back of my throat where this bone is..its right under/behind the right tonsil. Is that where yours and everyone elses is? I also get pricks of pain, lil sharp jabs every now and then, down the side of my neck. I DO have DDD in my neck tho...so maybe thtas from that? Or maybe from my thyroid disease? :TOO much to worry about and docs dont help. ENT said Im a mystery. So how do they test to see if its vascular? Would that be on the CT scan?

Thank you, Im going to call and see if I can get a referral to a VN then. xo

That was totally my case. Pain right over the carotid bulb- I was diagnosed with vascular eagles by the 3D CTA on the radiology report and by the vascular neurologist. Now to get ENT on board for surgery.

No Doctor said:

Maybe it's time to find a new ENT or even better a vascular neurologist to rule out vascular involvement. It seems to me that anytime they do a styloidectomy through the neck they are going to be close to a lot of arteries, but ENTs remove tumors and such all the time that I would think would be much more difficult than the styloidectomy. My ENT, to my knowledge had never done the procedure but said I do surgeries in the neck all the time and honestly that bone probably gets in the way for most other surgeries they do. Everyone's bone grows at a little different angle, length, etc. I would agree that the overall length has something to do with it but it would seem to me that at some point it's not about length but about the angle the bone is growing and which nerve, artery, etc is in its path. Mine deviated down my neck and therefore was in contact with the carotid, but wasn't as long as some other people I've read about on this forum. I had no pain in the area you describe. The pain I experienced was about two inches below the area between my ear and jaw and it never went away (basically where you feel the pulse in your neck). If your concerned about the vascular aspects, I would highly recommend a knowledgeable vascular neurologist and see what they have to say. Mine was diagnosed by CT scan. So, yes it should be on the CT scan and it maybe that the ENT knows there is no issue, but if you want a 2nd opinion then like I said I would find a vascular neurologist.

Lisa said:

No I havent had stroke symptoms but Im just so scared and overwhelmed. The ENT says its not that big and I'll be fine, but he cant do surgery as its too close to the main artery. I get pain in the back of my throat where this bone is..its right under/behind the right tonsil. Is that where yours and everyone elses is? I also get pricks of pain, lil sharp jabs every now and then, down the side of my neck. I DO have DDD in my neck tho...so maybe thtas from that? Or maybe from my thyroid disease? :TOO much to worry about and docs dont help. ENT said Im a mystery. So how do they test to see if its vascular? Would that be on the CT scan?

My styloids are both at an inward angle toward the carotid. The Right is the culprit and wraps around the exterior carotid. Was yours the external or internal that had the dissection? So worried that a stroke is the next step if surgery isn't done. I've already had a few TIA's- I'm an RN, so I know. I can't thank you enough for the names of your doctors!
The left is not as long, so not close to the vascular areas.
No Doctor said:

Sorry to hear that you are having troubles with a defintive diagnosis Hopeful. I can't speak to your particular situation because I am not a Doctor but I can tell you a little about my experience with ES which will show you that you have to be persistent. Mine started with severe neck pain that went on for years (5+). Went to many different Drs who said it was disc problems, bone spurs, TMJ, etc, etc, etc. I was treated for TMJ for more than a year with some relief. I was also having a popping which felt like it was my jaw but I would get a vagus nerve response from it (sweating profusely, short of breath, excruciating pain lasting up to 2 minutes - try explaining that one to a Dr and you get strange looks) After going through all the treatments I had a stroke. Nobody could definitively determine why I had the stroke but I was persistent and went to several neurologists before seeing a Vascular Neurologist, which is when they found the ES. The neck pain for all those years was the ES but additionally I had a dissection in my carotid artery caused by my Styloid Process (also note that the vagus nerve runs close to your carotid which was also being hit by the styloid). My styloid measured somewhere around 50mm and since been removed on that side.

What I have concluded from all of this is, and I disclose that I have no medical background but did a lot of research on my own and used common sense, that its not necessarily the length of the styloid process but the direction in which it elongates and what structures are in that general area(hence wide array of symptoms). Mine happened to deviate further down my neck instead of towards the throat which put it in contact with my carotid artery and vagus nerve. My other side is elongated as well but i have no symptoms from it because its no where near my carotid. I had no occlusion of the carotid but it apparently was just long enough to create a very small tear in the artery wall causing clots to form hence a stroke.

You know your own body and symptoms. People thought I was crazy for years until I had the stroke and even more crazy for not just excepting the unknown diagnosis until the "real" problem was discovered. If you are not satisfied with the results seek different explanations elsewhere. Sometimes you have to sort through the sub-specialties to find someone who has had experience with similar symptoms. When I went to the vascular neurologist and showed where my neck hurt they immediately thought dissection which was confirmed on scans done while I was in the hospital with the stroke but was missed because everyone suspected it was the disc problems (that I didn't have) and didn't truly understand the symptom.

Hang in there and keep seeking answers if your not satisfied. You are not crazy.

April,

Have you seen a surgeon you feel comfortable with & who has offered you a surgical approach you feel comfortable with? Getting a second opinion is a good idea.

The current ES doctor list from this forum is at the bottom of this box.

April E said:

My styloids are both at an inward angle toward the carotid. The Right is the culprit and wraps around the exterior carotid. Was yours the external or internal that had the dissection? So worried that a stroke is the next step if surgery isn't done. I've already had a few TIA's- I'm an RN, so I know. I can't thank you enough for the names of your doctors!
The left is not as long, so not close to the vascular areas.
No Doctor said:

Sorry to hear that you are having troubles with a defintive diagnosis Hopeful. I can't speak to your particular situation because I am not a Doctor but I can tell you a little about my experience with ES which will show you that you have to be persistent. Mine started with severe neck pain that went on for years (5+). Went to many different Drs who said it was disc problems, bone spurs, TMJ, etc, etc, etc. I was treated for TMJ for more than a year with some relief. I was also having a popping which felt like it was my jaw but I would get a vagus nerve response from it (sweating profusely, short of breath, excruciating pain lasting up to 2 minutes - try explaining that one to a Dr and you get strange looks) After going through all the treatments I had a stroke. Nobody could definitively determine why I had the stroke but I was persistent and went to several neurologists before seeing a Vascular Neurologist, which is when they found the ES. The neck pain for all those years was the ES but additionally I had a dissection in my carotid artery caused by my Styloid Process (also note that the vagus nerve runs close to your carotid which was also being hit by the styloid). My styloid measured somewhere around 50mm and since been removed on that side.

What I have concluded from all of this is, and I disclose that I have no medical background but did a lot of research on my own and used common sense, that its not necessarily the length of the styloid process but the direction in which it elongates and what structures are in that general area(hence wide array of symptoms). Mine happened to deviate further down my neck instead of towards the throat which put it in contact with my carotid artery and vagus nerve. My other side is elongated as well but i have no symptoms from it because its no where near my carotid. I had no occlusion of the carotid but it apparently was just long enough to create a very small tear in the artery wall causing clots to form hence a stroke.

You know your own body and symptoms. People thought I was crazy for years until I had the stroke and even more crazy for not just excepting the unknown diagnosis until the "real" problem was discovered. If you are not satisfied with the results seek different explanations elsewhere. Sometimes you have to sort through the sub-specialties to find someone who has had experience with similar symptoms. When I went to the vascular neurologist and showed where my neck hurt they immediately thought dissection which was confirmed on scans done while I was in the hospital with the stroke but was missed because everyone suspected it was the disc problems (that I didn't have) and didn't truly understand the symptom.

Hang in there and keep seeking answers if your not satisfied. You are not crazy.

212-EaglesSyndromeDoctors030315.xlsx (23.3 KB)

If you are open to traveling you should consider Dr. Gillespie in Monroe NC. He has helped me and is performing surgery on another member of this site on Monday.

If you are open to traveling you should consider Dr. Gillespie in Monroe NC. He has helped me and is performing surgery on another member of this site on Monday.

Did Dr. Gillespie do external surgery?